As you've gotten to know me through my posts, you probably already know that publicly recognized holidays don't mean much to me. I believe every day is worth celebrating, and I'd like to think that with my daily struggles, I still recognize a moment to smile or toast or shake my booty in commemoration of even the commonest gem of daily living.
Daily celebration is hard to keep in your calendar when you're healthy. For those of us struggling with painful, rare, chronic, or terminal diseases, or just the common cold, I'm not certain which direction the scale tips. We may be more cognizant of a fleeting moment of bliss, or we may be mired in the myriad responsibilities and distress of our disease.
Nothing is absolute. Everything is relative.
For some, 2008 was a shit year we'd rather erase and race into 2009. For others, it may have been the best year of their lives.
But why measure life in years? After all, some people have a lot of years ahead of them, and some people have just moments. That's blatant discrimination!
Although I haven't responded to any comments, I want you to know that I celebrate every comment posted on this site and every email sent in response to a post. You're responses, participation, support, and the feeling I get from the potential to help others by sharing my very personal experiences of living with a rare neurological disease is as potent as the ball drop in Times Square.
I love toasts, and I'm not going to hold back just because it's an expected ritual of a holiday that is meaningless to me.
So I am raising my coffee mug in this moment (2:42 12.31.08) for a vague but gracious toast:
To you, my readers, and to my friends and family, the healthy and the sick, the happy and the sad, the free and the imprisoned (wrongfully or not), the good doctors and the bad doctors, the artists and the stock brokers, the rich, the poor, and the bourgeoisie, the TV stars and the couch potatoes, the givers and the takers, and everyone I've failed to mention...
May we all have as many moments as we can collectively greet of happy, healthy everything.
Best,
Melanie
The Days & Nights, Slants & Twists, & Wobbly Meanderings of a Woman With Rare & Incurable Neurological Disorders
12.31.2008
12.30.2008
Data Dummy: Johns Hopkins - The Neuro Masters(?)
An Update-less Update
A Fruitless Follow-up to: Subjective, Objective, Fact, Figure, Data, Ativan Hangover, Expectations, Boohaha (posted 12.17.08)
Author's Note: I am typing this by muscle memory through blurry eyes and double-vision. Please forgive typos. Disclaimer: Quotes may not be exact due to short-term memory.
I have never been more more misled or lied to or misled since my diagnosis of transverse myelitis(TM) on September 18, 2008. Relative to my 33 years on this earth, that's a statistical nightmare.
Who are the culprits? Enthusiastic-I-Heal-All-Wounds-And-Ailments-Specialists.
While I appreciated the optimism (and believed it) in the beginning, I'm up to my c-spine with broken promises and the knee-knocking disappointment that accompanies them.
JOHNS HOPKINS: THE TRANSVERSE MYELITIS "MASTERS"
or
PROMISES SHROMISES
It took a lot of work: on-line-researching, faxing, phone calling, faxing, hospital-records-visiting, faxing, plane-and-train-reservation-making, emailing, faxing, referral-getting, case-worker-consulting, pre-cert getting, phone calling, emailing, faxing, work-leave-permitting (I've used up every sick and vacation day and then some for hospital stays and surgeries), and in-Baltimore-transportation-arranging to prepare for the (relatively speaking) biggest, best-est opportunity of my lifetime: my appointment with the masters of TM.
Not only was I offered an appointment quickly - less than a month after they received all of my records, but as fate seemed to have it, they were practically in my back yard (it's a 75-minute train ride). I even had to turn to down an earlier appointment because it coincided with the start of my 2nd round of plasmapharesis treatment. Getting into Hopkins was like winning an academy award, being accepting to any Ivy League School, getting a $10K raise, winning the frickin' Olympics Gold Medal in swimming without knowing how to swim.
This was a match made in heaven, and in heaven there are no sick people or alarm clocks, everyone smiles and smells like vanilla blossom, nobody loses their keys or their lunch, and all questions have answers.
On December 17, 2008 - three months after my diagnosis, and two days after my last plasmapharesis treatment - my mother (who flew to Philadelphia from Pittsburgh (again) the night before) and I rode the 7:30AM train to heaven, which in this case was located in Baltimore, for my appointment with Dr. Pardo, a specialist at Hopkins' Center for Transverse Myelitis Research.
At the end of that 13-hour day, my mother was convinced that heaven did exist - we were on the right(eous) path. But I was tired, frustrated, and admittedly a bit puffy-eyed because we arrived with questions and left without answers, and as we all know, that's not heaven's tenet.
And the reality of hope sets in:
But by the next day, once I had processed the information and awakened from my Ativan coma, I recognized that no matter what my test results were, Dr. Pardo was going to help me:
Triple Yay!
A new plan to come. New hope. New possibilities for recovery. A new me, more like the old me was in my future again. Recognizing that Dr. Pardo not only had a nice smile but was going to provide me with the most appropriate, best, progressive treatment available was all I needed to feel some relief.
THE BAD BOYFRIEND DOCTOR
After several calls to Dr. Pardo's office requesting the MRI results, and some in-the-mean-time-while-my-condition-is-worsening direction, we finally received confirmation on Friday that Dr. Pardo would be calling me Monday with "further instructions."
A really bad boyfriend wouldn't have called at all, so I have to give him that benefit. Plus, although he felt me up and down with soft hands and iron-hard devices on our first meeting, I didn't offer any compensation.
But like most bad boyfriends who sweep you off your feet with their charm, promise the world and the moon, and to be there when you need them, but then ultimately drop you on your ass without padding or explanation (except that it's your fault) and a devout unwillingness to answer what you perceive to be important questions, I'm remiss to state, Dr. Pardo fits that role.
Like most women who find themselves with bad boyfriends, I sniveled while he let me down, sobbed when we said goodbye, consulted girlfriends (mom, Dr. Marni, and Alicia) who rooted me on with their "you're the best", "this isn't right", "how dare he", "we won't stop until we get you better" support.
While I'm ready to give Pardo a second chance (another condition of the good-girlfriends-attracted-to-bad-boyfriends-syndrome), it doesn't change the fact that I'm pissed off - not only by his deception, but that I'm yet again in limbo. I can recover from another's perjury, but there's no way my once malleable body could fold itself into the crowd-awing back-bend required to win that game. (Sidebar: In middle school, I was quite the limbo champion.)
THE LET DOWN
Over the last four years of "dating" myriad specialists, I've devoted myself to the few who not only find the answers, but do so proactively and with compassion. I expect the same from my docs as I do from my friends, boyfriends, or employees. Do what you say you're going to do, i.e., act with integrity.
Some doctors are data doctors. Some look at the big picture. Some speak in terms anyone can understand, and some speak to you the same way they'd speak to a fifth year med student. Some give you definitive answers, and some give you possibilities. Some predict your future, and some make your future.
Dr. Pardo presents himself as a big-pic-predict-and-make-your-future doc - a total package!
But he's a data man. And my data is as inconclusive as day 1. Surprise, surprise.
Now I'm no doc, but I've had 4 months in and out of the hospital to educate myself on TM, and that included reading every scientific article available online, consulting multiple doctors, and asking infinite questions to my nurses, docs, caseworkers, and fellow TM'ers. (Sidebar: Anyone with a serious disease or disorder should be as informed as possible, because you WILL NEED TO be your own advocate.)
Though I'm a rare disease novice, I learned the psychological importance of having a plan in place as my uncle battled fatal brain cancer. The worst thing not to have when you're sick is a plan. Plans give direction, purpose, hope. Basically, a plan of action is synonymous with man's search for meaning. We need meaning to exist.
The Man with a Plan:
While my current Philadelphia neurologist (whom I adore), Dr. Schwartzman has given me a plan (which has changed as many times as my wardrobe), it was a plan none-the-less. The only glitch, and this is a major one and not Dr. S's fault by far, is Aetna Insurance's continuous denial of coverage of the plan's treatment (See: Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story posted 11.25.08).
THE DIAGNOS-LESS DIAGNOSIS, THE PLAN-LESS PLAN
Even though Dr. Pardo ordered every test he needed to confirm my diagnosis and reveal the big immunological picture that has risen the neuro body-snatching demons, and his clinical observations confirmed a "neurological issue that represented similarly to TM," he is still unwilling to give me a diagnosis.
While my symptoms and side effects clearly match only two neurological diseases: TM and MS, and TM can exist without supporting data and MS can not, Dr. Pardo is still contrary to verify what has been diagnosed by Dr. S, one of the other world's leading neurologists, and clinically observed by the Hopkins man himself.
Pardo's plan:
He still thinks "something is going on," wants me to make another trip to Hopkins to see their psychiatrist who specializes in MS and similar diseases, as well as their Rheumatologist, who will probably just look at the blood work like every other rheumatologist.
I know I'm sounding like a grouchy baby, but even I think I deserve a moment or two of bitching and whining.
Pardo's "further instructions" included a vague diagnosis of myelopathy (without defining what it is), an unidentified systemic disorder (perhaps Lupus, which can cause TM), and he inferred that my symptoms were related to depression. Depression! Even Dr. S, Dr. Marni, my friends and family, assure me that they would be surprised if I weren't depressed by a life-changing, debilitating, painful, prognosis-less disease. Even my mother's depressed because of my TM, and she doesn't even have it.
Pardo's big but (very loosely quoted):
I don't believe your current treatment plan is appropriate or working, and I am unwilling to offer any treatment plan.
My big but thought:
BUT TM has a very short window for best-case-recovery, which for most is only 90%. I have two months left to gain the majority of my recovery, and then a year and a half more to expect minimal changes. After that, I'm stuck. I'm running out of time.
Me:
If I don't have TM, how do you explain the incontinence, the vision loss, the cognitive problems, the neurogenic bladder?
Dr. Pardo:
I can't.
Action:
Phone consultation ends. After my sob-session and friend-buttress-convos, I researched myelopathy and was lead to articles on transverse myelitis. This article stated, "You may also hear the term myelopathy, which is a more general term for any disorder of the spinal cord."
Me:
Cop out.
So here are my lay responses:
My emotional/personal responses
(developed last night in collaboration with Marni (virtual doc/BF) and mom)
CONCLUSION-LESS CONCLUSION
Appreciate the orange reflection of this morning's sunrise painting my apartment walls. Be good to myself. Be patient (no pun intended). Savor my extended New Years vacation and the opportunity to share it with my mother (she arrives Wednesday). Get a mother-daughter-friend Tamar mani-pedi this week (they're on sale at Jean's Nails in the 1600 block of Spruce Street!). Delight in pain-free moments. Acknowledge my improvements. Accept my deterioration...as temporary. Meditate with positive intent. Breathe deeply into my spine (OT exercise). Vent as needed. Dress better than I feel. Be bright, therefore return to Diesel and buy those perfect ass-lifting, thigh-accentuating shiny teal pants. Attempt retail therapy moderation in favor of assigning income to CAM (after I buy those pants). Drink wine and vodka...separately and in moderation. Be unstoppable.
A Fruitless Follow-up to: Subjective, Objective, Fact, Figure, Data, Ativan Hangover, Expectations, Boohaha (posted 12.17.08)
Author's Note: I am typing this by muscle memory through blurry eyes and double-vision. Please forgive typos. Disclaimer: Quotes may not be exact due to short-term memory.
I have never been more more misled or lied to or misled since my diagnosis of transverse myelitis(TM) on September 18, 2008. Relative to my 33 years on this earth, that's a statistical nightmare.
Who are the culprits? Enthusiastic-I-Heal-All-Wounds-And-Ailments-Specialists.
While I appreciated the optimism (and believed it) in the beginning, I'm up to my c-spine with broken promises and the knee-knocking disappointment that accompanies them.
JOHNS HOPKINS: THE TRANSVERSE MYELITIS "MASTERS"
or
PROMISES SHROMISES
It took a lot of work: on-line-researching, faxing, phone calling, faxing, hospital-records-visiting, faxing, plane-and-train-reservation-making, emailing, faxing, referral-getting, case-worker-consulting, pre-cert getting, phone calling, emailing, faxing, work-leave-permitting (I've used up every sick and vacation day and then some for hospital stays and surgeries), and in-Baltimore-transportation-arranging to prepare for the (relatively speaking) biggest, best-est opportunity of my lifetime: my appointment with the masters of TM.
Not only was I offered an appointment quickly - less than a month after they received all of my records, but as fate seemed to have it, they were practically in my back yard (it's a 75-minute train ride). I even had to turn to down an earlier appointment because it coincided with the start of my 2nd round of plasmapharesis treatment. Getting into Hopkins was like winning an academy award, being accepting to any Ivy League School, getting a $10K raise, winning the frickin' Olympics Gold Medal in swimming without knowing how to swim.
This was a match made in heaven, and in heaven there are no sick people or alarm clocks, everyone smiles and smells like vanilla blossom, nobody loses their keys or their lunch, and all questions have answers.
On December 17, 2008 - three months after my diagnosis, and two days after my last plasmapharesis treatment - my mother (who flew to Philadelphia from Pittsburgh (again) the night before) and I rode the 7:30AM train to heaven, which in this case was located in Baltimore, for my appointment with Dr. Pardo, a specialist at Hopkins' Center for Transverse Myelitis Research.
At the end of that 13-hour day, my mother was convinced that heaven did exist - we were on the right(eous) path. But I was tired, frustrated, and admittedly a bit puffy-eyed because we arrived with questions and left without answers, and as we all know, that's not heaven's tenet.
And the reality of hope sets in:
But by the next day, once I had processed the information and awakened from my Ativan coma, I recognized that no matter what my test results were, Dr. Pardo was going to help me:
- He PROMISED to verify the TM and seek the larger, clearer, more inclusive diagnosis that he believed he would find and begin a new and improved TREATMENT plan based on those findings.
- He PROMISED that if they were unable to make a clear diagnosis that they would DESIGN a TREATMENT path (perhaps by trial and error?) REGARDLESS of whether or not the new data findings were conclusive, which would be based on a "best educated assumption" of what was debilitating my mind and body.
Triple Yay!
A new plan to come. New hope. New possibilities for recovery. A new me, more like the old me was in my future again. Recognizing that Dr. Pardo not only had a nice smile but was going to provide me with the most appropriate, best, progressive treatment available was all I needed to feel some relief.
THE BAD BOYFRIEND DOCTOR
After several calls to Dr. Pardo's office requesting the MRI results, and some in-the-mean-time-while-my-condition-is-worsening direction, we finally received confirmation on Friday that Dr. Pardo would be calling me Monday with "further instructions."
A really bad boyfriend wouldn't have called at all, so I have to give him that benefit. Plus, although he felt me up and down with soft hands and iron-hard devices on our first meeting, I didn't offer any compensation.
But like most bad boyfriends who sweep you off your feet with their charm, promise the world and the moon, and to be there when you need them, but then ultimately drop you on your ass without padding or explanation (except that it's your fault) and a devout unwillingness to answer what you perceive to be important questions, I'm remiss to state, Dr. Pardo fits that role.
Like most women who find themselves with bad boyfriends, I sniveled while he let me down, sobbed when we said goodbye, consulted girlfriends (mom, Dr. Marni, and Alicia) who rooted me on with their "you're the best", "this isn't right", "how dare he", "we won't stop until we get you better" support.
While I'm ready to give Pardo a second chance (another condition of the good-girlfriends-attracted-to-bad-boyfriends-syndrome), it doesn't change the fact that I'm pissed off - not only by his deception, but that I'm yet again in limbo. I can recover from another's perjury, but there's no way my once malleable body could fold itself into the crowd-awing back-bend required to win that game. (Sidebar: In middle school, I was quite the limbo champion.)
THE LET DOWN
Over the last four years of "dating" myriad specialists, I've devoted myself to the few who not only find the answers, but do so proactively and with compassion. I expect the same from my docs as I do from my friends, boyfriends, or employees. Do what you say you're going to do, i.e., act with integrity.
Some doctors are data doctors. Some look at the big picture. Some speak in terms anyone can understand, and some speak to you the same way they'd speak to a fifth year med student. Some give you definitive answers, and some give you possibilities. Some predict your future, and some make your future.
Dr. Pardo presents himself as a big-pic-predict-and-make-your-future doc - a total package!
But he's a data man. And my data is as inconclusive as day 1. Surprise, surprise.
Now I'm no doc, but I've had 4 months in and out of the hospital to educate myself on TM, and that included reading every scientific article available online, consulting multiple doctors, and asking infinite questions to my nurses, docs, caseworkers, and fellow TM'ers. (Sidebar: Anyone with a serious disease or disorder should be as informed as possible, because you WILL NEED TO be your own advocate.)
Though I'm a rare disease novice, I learned the psychological importance of having a plan in place as my uncle battled fatal brain cancer. The worst thing not to have when you're sick is a plan. Plans give direction, purpose, hope. Basically, a plan of action is synonymous with man's search for meaning. We need meaning to exist.
The Man with a Plan:
While my current Philadelphia neurologist (whom I adore), Dr. Schwartzman has given me a plan (which has changed as many times as my wardrobe), it was a plan none-the-less. The only glitch, and this is a major one and not Dr. S's fault by far, is Aetna Insurance's continuous denial of coverage of the plan's treatment (See: Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story posted 11.25.08).
THE DIAGNOS-LESS DIAGNOSIS, THE PLAN-LESS PLAN
Even though Dr. Pardo ordered every test he needed to confirm my diagnosis and reveal the big immunological picture that has risen the neuro body-snatching demons, and his clinical observations confirmed a "neurological issue that represented similarly to TM," he is still unwilling to give me a diagnosis.
While my symptoms and side effects clearly match only two neurological diseases: TM and MS, and TM can exist without supporting data and MS can not, Dr. Pardo is still contrary to verify what has been diagnosed by Dr. S, one of the other world's leading neurologists, and clinically observed by the Hopkins man himself.
Pardo's plan:
He still thinks "something is going on," wants me to make another trip to Hopkins to see their psychiatrist who specializes in MS and similar diseases, as well as their Rheumatologist, who will probably just look at the blood work like every other rheumatologist.
I know I'm sounding like a grouchy baby, but even I think I deserve a moment or two of bitching and whining.
Pardo's "further instructions" included a vague diagnosis of myelopathy (without defining what it is), an unidentified systemic disorder (perhaps Lupus, which can cause TM), and he inferred that my symptoms were related to depression. Depression! Even Dr. S, Dr. Marni, my friends and family, assure me that they would be surprised if I weren't depressed by a life-changing, debilitating, painful, prognosis-less disease. Even my mother's depressed because of my TM, and she doesn't even have it.
Pardo's big but (very loosely quoted):
I don't believe your current treatment plan is appropriate or working, and I am unwilling to offer any treatment plan.
My big but thought:
BUT TM has a very short window for best-case-recovery, which for most is only 90%. I have two months left to gain the majority of my recovery, and then a year and a half more to expect minimal changes. After that, I'm stuck. I'm running out of time.
Me:
If I don't have TM, how do you explain the incontinence, the vision loss, the cognitive problems, the neurogenic bladder?
Dr. Pardo:
I can't.
Action:
Phone consultation ends. After my sob-session and friend-buttress-convos, I researched myelopathy and was lead to articles on transverse myelitis. This article stated, "You may also hear the term myelopathy, which is a more general term for any disorder of the spinal cord."
Me:
Cop out.
So here are my lay responses:
My emotional/personal responses
- I feel betrayed.
- I think the doctor's oath should include, Do not make promises to patients that you can not keep.
- I cannot rely on doctors.
- I must be proactive.
- Accept the gifts of emotional support from friends, family, and my new special friend.
- Accept their offers of sharing the responsibilities of pursuing plan of action)
- Don't let disappointment/illness affect my work. (I worked from home until 11PM last night)
(developed last night in collaboration with Marni (virtual doc/BF) and mom)
- Explore every possible option.
- Swallow my pride, return to John's Hopkins and see their psychiatrist and rheumatologist.
- Get my current reheumatologist's opinion, Dr. Huppert, who is also magnificently treating my pain.
- See neurological opthamologist at U of Penn Hospital (Pardo recommendation; appt. scheduled)
- Schedule 3rd opinion by a new neurologist (at Penn?).
- Wait for final decision from Aetna on IVIg treatment. Hope for the best.
- Schedule appointment with hypnotist: quit smoking by 1.15.
- Reschedule my appointment with Dr. Rozenzweig, an integrative medicine doctor, at The Healing Arts Center in Old City.
- Work with Dr. R to explore Complementary Alternative Medicine (CAM) practitioners and treatments.
- See Dr. S for my 1.22 appointment.
- If by that appointment, IVIg treatment is not approved by Aetna, demand next possible treatment: chemo. (Note: Dr. S is against this treatment for women of child-bearing age)
- Invest in hats, scarves, and perhaps a sexy red wig, if necessary.
- Continue rehab at Magee.
- If all else fails, go to Mayo Clinic.
CONCLUSION-LESS CONCLUSION
Appreciate the orange reflection of this morning's sunrise painting my apartment walls. Be good to myself. Be patient (no pun intended). Savor my extended New Years vacation and the opportunity to share it with my mother (she arrives Wednesday). Get a mother-daughter-friend Tamar mani-pedi this week (they're on sale at Jean's Nails in the 1600 block of Spruce Street!). Delight in pain-free moments. Acknowledge my improvements. Accept my deterioration...as temporary. Meditate with positive intent. Breathe deeply into my spine (OT exercise). Vent as needed. Dress better than I feel. Be bright, therefore return to Diesel and buy those perfect ass-lifting, thigh-accentuating shiny teal pants. Attempt retail therapy moderation in favor of assigning income to CAM (after I buy those pants). Drink wine and vodka...separately and in moderation. Be unstoppable.
12.26.2008
Oh God: Part 2: Self-contradiction, Irony, and a Prayer
updated 12.30.08
I just got word via email, that one of my dear Hahnemann Hospital companions, Lynn, had a seizure last week that has taken her memory back in time to the 1990s. She suffers from both Reflex Sympathetic Dystrophy (RSD) and severe seizures, and had been making remarkable recovery since her hospital release. She sent me an email last month, excited that she was up to 25 minutes of walking on the treadmill and concerned about my recovery.
Her husband, Dave, was thoughtful enough to alert me of her current condition, wrote, "she could use your prayers." Ironically, I received this email just as I had posted Oh God on Christmas Day, which (blasphemously?) questions religions' reliance on prayer over personal responsibility.
After recovering from my shock and sadness for both Lynn and Dave and despite my disbelief in the big man in the sky and my rejection of organized religion, my first response was to say a prayer for Lynn, which came simultaneously with, Oh shit, my prayers? Not only does this contradict almost everything I had just published moments before, but what good are my prayers to anyone now.
And now, we're all probably thinking (I am including myself in this), What?! A GHB (godless heathen bastard) wants to pray? Yessirreee.
And that is where the realizations began:
Realization #1: I want to pray for Lynn
Although I was raised in a fairly religious household, and we said shabbos prayers, prayers over food, prayers for the sick and all kinds of holiday prayers, I realized, I don't know a single real-deal prayer. But real-deal prayers aren't my style anyway, so I'll ask my real-deal-religious friends and relatives to manage that part.
Realization #2: I have never stopped praying
Before I got sick, I practiced yoga regularly. Since my first class in Berlin, Germany in 1997, most of my yoga practices, whether group or home alone, have included chanting. These are prayers sent out to the universe for benevolent things, such as peace and enlightenment, and they are as valid to me as any organized religious prayer.
Realization #3: A smile is a gesture that is a prayer
I believe that when we send goodness into the universe, we will receive goodness. For instance, if I smile at you, there's a good chance you'll smile at me, and maybe that smile will be passed on and on, altering a moment or a day or a lifetime for someone. Or maybe it won't. Either way, that smile is a prayer for happiness and connection.
Realization #4: My neurogenic bladder meditation is a prayer
Since I got transverse myelitis, I have had numerous symptoms and side effects. One annoying and time-wasting one that drives me crazy is my neurogenic bladder. While in the hospital, I started doing a pee meditation every time I went to the bathroom.
As I sat, waiting for the release from my strong urge to urinate, I closed my eyes, rested my feet on the floor, placed my palms together, lowered my head, and quietly chanted, pee, pee, pee. Since October, I've probably whispered that word 1000's of times, and almost every time I did my pee chant, it would eventually work. Sometimes it would take 30 seconds, sometimes 15 minutes, and sometimes it was a wash. But my pee meditation is a prayer that works.
Realization #5: Hope is a prayer
People hope to God for miscellany every day: I hope to God I make this light. I hope to God I get an A. I hope to God everyone shows up. I hope to God this guy really likes me. Whether or not the name God is inserted in that I hope to statement, it's a kind of prayer - a selfish prayer - but a prayer nonetheless.
While these are superficial examples, there are many people who voice their hopes publicly or privately every day. I hope that I get 100% recovery, and I hope this for Lynn and all of my hospital friends, and all the people suffering from similar or drastically different illnesses.
I even admitted to this in my last post:
Realization #6: Prayer is what you make it - with or without God's intervention
If I want the world to pray for Lynn's recovery, then I must believe in the power of prayer. Prayer exists in as many forms as the image of a higher power in different cultures.
Prayer can be a kind thought, a smile, a meditation, a chant, a real-deal-foreign-language script. One does not have to believe in God or Allah or any higher power that acts as the conduit for all wishes, hopes, and prayers. We can answer each other's hopes and prayers.
Realization #6b: We can answer each other's hopes and prayers
I had to repeat this. It both validates and invalidates what I said about taking responsibility in Oh God:
I still stand by this. I think there are some people who use religion, God, and prayer as the easy way out of personal and social responsibility, but to clarify, I don't believe that all people who pray to God are shirking liability.
But, what if the model for these kinds of believers was altered to include my 6b realization? Could we have better results? Would it make a difference? Or is it part of the yin/yang balance that maintains some sort of order in this world, so that those of us that want to or choose to go the self-reliant/shared-responsibility route can do so, and we can all feel that we've done the right thing.
PLEASE PRAY FOR LYNN
Whatever your style, your belief, your inclination, send out your energy to the universe or talk to God, but pray for Lynn. I've included links to a few prayers for the sick:
Listen to a hospital conversation between Lynn and me:
Download Neuro Detour - Conversation With Lynn Albert
I just got word via email, that one of my dear Hahnemann Hospital companions, Lynn, had a seizure last week that has taken her memory back in time to the 1990s. She suffers from both Reflex Sympathetic Dystrophy (RSD) and severe seizures, and had been making remarkable recovery since her hospital release. She sent me an email last month, excited that she was up to 25 minutes of walking on the treadmill and concerned about my recovery.
Her husband, Dave, was thoughtful enough to alert me of her current condition, wrote, "she could use your prayers." Ironically, I received this email just as I had posted Oh God on Christmas Day, which (blasphemously?) questions religions' reliance on prayer over personal responsibility.
After recovering from my shock and sadness for both Lynn and Dave and despite my disbelief in the big man in the sky and my rejection of organized religion, my first response was to say a prayer for Lynn, which came simultaneously with, Oh shit, my prayers? Not only does this contradict almost everything I had just published moments before, but what good are my prayers to anyone now.
And now, we're all probably thinking (I am including myself in this), What?! A GHB (godless heathen bastard) wants to pray? Yessirreee.
And that is where the realizations began:
Realization #1: I want to pray for Lynn
Although I was raised in a fairly religious household, and we said shabbos prayers, prayers over food, prayers for the sick and all kinds of holiday prayers, I realized, I don't know a single real-deal prayer. But real-deal prayers aren't my style anyway, so I'll ask my real-deal-religious friends and relatives to manage that part.
Realization #2: I have never stopped praying
Before I got sick, I practiced yoga regularly. Since my first class in Berlin, Germany in 1997, most of my yoga practices, whether group or home alone, have included chanting. These are prayers sent out to the universe for benevolent things, such as peace and enlightenment, and they are as valid to me as any organized religious prayer.
Example:Peace mantra
OM SAHANA VAVATU SAHANA BHUNATTU
SAHA VIRYAM KARAWAVAHAI
TEJASVINAVADITAMASTU
MA VIDVISHAVAHAI
OM SHANTI SHANTI SHANTI OMTogether may be be protected
Together may we be nourished
Together may we work with great energy
May our journey together be brilliant and effective
May there be no bad feelings between us
Peace, peace, peace(From the Kato Upanishad)
Realization #3: A smile is a gesture that is a prayer
I believe that when we send goodness into the universe, we will receive goodness. For instance, if I smile at you, there's a good chance you'll smile at me, and maybe that smile will be passed on and on, altering a moment or a day or a lifetime for someone. Or maybe it won't. Either way, that smile is a prayer for happiness and connection.
Realization #4: My neurogenic bladder meditation is a prayer
Since I got transverse myelitis, I have had numerous symptoms and side effects. One annoying and time-wasting one that drives me crazy is my neurogenic bladder. While in the hospital, I started doing a pee meditation every time I went to the bathroom.
As I sat, waiting for the release from my strong urge to urinate, I closed my eyes, rested my feet on the floor, placed my palms together, lowered my head, and quietly chanted, pee, pee, pee. Since October, I've probably whispered that word 1000's of times, and almost every time I did my pee chant, it would eventually work. Sometimes it would take 30 seconds, sometimes 15 minutes, and sometimes it was a wash. But my pee meditation is a prayer that works.
Self-Contradiction: I'm still not holding my breath or pressing my palms together. Strength and stamina is a precious commodity when you have transverse myelitis, but responsibility is not. (From my 12.25.08 post: Oh God)
Religious-Contradiction: "... if you want to do something well, you have to practice it continually, even when you don't feel like doing it. This is as true of prayer as it is of playing a sport...a musical instrument, or writing. The sense of humility and awe of G-d that is essential to proper prayer does not come easily to modern man, and will not simply come to you when you feel the need to pray. If you wait until inspiration strikes, you will not have the skills you need to pray effectively." (From: Judaism 101: Prayers and Blessings, The Need for Prayer)
Realization #5: Hope is a prayer
People hope to God for miscellany every day: I hope to God I make this light. I hope to God I get an A. I hope to God everyone shows up. I hope to God this guy really likes me. Whether or not the name God is inserted in that I hope to statement, it's a kind of prayer - a selfish prayer - but a prayer nonetheless.
While these are superficial examples, there are many people who voice their hopes publicly or privately every day. I hope that I get 100% recovery, and I hope this for Lynn and all of my hospital friends, and all the people suffering from similar or drastically different illnesses.
I even admitted to this in my last post:
I have many religious friends and family...[and] I even hope [their prayers for me will] work their magic so that I'll be healed.
Realization #6: Prayer is what you make it - with or without God's intervention
If I want the world to pray for Lynn's recovery, then I must believe in the power of prayer. Prayer exists in as many forms as the image of a higher power in different cultures.
Prayer can be a kind thought, a smile, a meditation, a chant, a real-deal-foreign-language script. One does not have to believe in God or Allah or any higher power that acts as the conduit for all wishes, hopes, and prayers. We can answer each other's hopes and prayers.
Realization #6b: We can answer each other's hopes and prayers
I had to repeat this. It both validates and invalidates what I said about taking responsibility in Oh God:
We need to take responsibility, a lot lot lot more responsibility... there are a lot of people in this screwed up world that are either relying on God to take the initiative or aren't reaping the benefits of their selfless devotion.
I still stand by this. I think there are some people who use religion, God, and prayer as the easy way out of personal and social responsibility, but to clarify, I don't believe that all people who pray to God are shirking liability.
But, what if the model for these kinds of believers was altered to include my 6b realization? Could we have better results? Would it make a difference? Or is it part of the yin/yang balance that maintains some sort of order in this world, so that those of us that want to or choose to go the self-reliant/shared-responsibility route can do so, and we can all feel that we've done the right thing.
PLEASE PRAY FOR LYNN
Whatever your style, your belief, your inclination, send out your energy to the universe or talk to God, but pray for Lynn. I've included links to a few prayers for the sick:
Jewish prayer for the sick
Christian prayers for the sick
Buddhist prayer for the sick
Quaran prayers for the sick
Christian prayers for the sick
Buddhist prayer for the sick
Quaran prayers for the sick
Listen to a hospital conversation between Lynn and me:
Download Neuro Detour - Conversation With Lynn Albert
12.25.2008
Oh God
Thoughts on God and the power of prayer from a kind-of-not-quite-Jew on Christmas Day
I've been hearing a lot about God lately.
Not from the man/woman/he/she/it/avatar in the sky; rather, from the mortal mouths of doctors, taxi-drivers, friends, and bar buddies. Although this escalating omnipresence of God seems apropos for the holiday season, especially directed at a sicko like me, I'm conflicted, doubtful, and perhaps, as my dear and devout Mormon friend endearingly refers to her loving, atheist husband, a GHB (godless heathen bastard).
IN THE BEGINNING...
I was reared in a "Conservative" Jewish household, meaning my family accepted all the values, rituals, and teachings of Judaism, but took a little leeway in how strictly we adhered to them, i.e., we stretched the Jew-truth a bit. Being conservative in this sense, is kind of like being fashionable on a budget - you buy just enough new pieces to stay hip, but continue to wear those classic standbys. (Sidebar: most "conservative" Jews are democrats)
Being a conservative Jew makes holy-state-maintenance accessible, and makes their minority status look hipper in the eyes of the masses.
Although my immediate family were fashion-Jews, we attended the Gemilas Chesed, an Orthodox synagogue, because that's where my mother went when she was a kid. It was also where most of the few Jewish kids in White Oak attended Hebrew School and Sunday School. (Not Quite Non Sequitur Sidebar: My family also kept kosher for years to accommodate our orthodox relatives.)
Unlike more limber denominations and other 'ologies, Orthodox Judaism is by the book, and that behomethic book's characters overfloweth with powerful, all-knowing he's and subservient she's. As my boobs began to grow and my rights began to shrink, the reality of my diminution within my own religion was disheartening, disconcerting, and discouraging for a burgeoning feminist.
I could share many "for instances", but that will further distract me from the point I'm ciruitously reaching, so I'll share one of my favorites:
My best girlfriend Amy, who has an elephantine memory, recalls that even though she and I were verifiably the best and fastest Hebrew readers, those awards went to the boys, while we received certificates for "Loyalty" and "Devotion" - excellent traits, no doubt, but fair is fair. Clearly, the awards were fixed.
Even though women take the back seat at services and lose many of their equal rights by the age of 13 (maybe that's why it's an unlucky number), their contradictory role - mainly childbearing, is held with the greatest esteem.
AND SOME FELL AMONG THORNS
Thus, my exodus from organized religion began. While, it may have been a bit thorny for my parents, I didn't feel a single prick as I loosened my ties to Judaism. I was imprinted, but I was liberated. Despite that, leaving one's religion isn't as simple as tossing away a dozen dead roses.
Parting is never easy, especially when it really pisses off someone you love. In my case, it wasn't God that was pissed, though many would disagree, it was my parents, and that rejection spawned some thorny times that are better left in the dumpster.
Rejecting mass belief systems, especially those that are exclusive and discriminatory, came naturally to me. Rejecting the Judeo-Christian God, and all of the transcendental shields and buckles that come pre-packaged (I love "accessories included") with that unwavering belief, was less arduous than Moses' journey, but took more than 40 days and nights.
Amy remembers me waffling between atheism and agnosticism since I was a pre-teen. Since then, I've tried to believe in God or different kinds of God beliefs, such as God is within all of us, or, well, that's about as far as I got.
Hey God, at least I tried.
AND THE TAXI-DRIVER SAID PRAY,
AND THE DOCTOR SAID IN GOD'S HANDS,
AND THE CO-WORKER SAID YOU'RE IN MY PRAYERS,
AND THE STRANGER SAID GOD WILL SAVE YOU, AND...
I'm still sick, and my uncle still died at the age of 43 of a brain tumor, and we're still at war, and soldiers and civilians are losing limbs and lives, and 100 million+ people are sleeping on cement, and my mother is still sad that she can't fix me, and an Egyptian schoolteacher has been sentenced to ONLY 6 years in jail for beating a student to death who didn't do his homework, and a man dressed as Santa shot a girl in the face, and Somalis have faced more violence in one year than in 10, and Bush served two terms, and money is power, and the government is controlled by stakeholders who keep life-saving cures behind white doors, and it's 60 degrees in Philadelphia in December, and fully-abled people don't offer a hand, and the US has the largest incarcerated population in the world, and women are being infibulated in Africa and the middle east, and..., and..., and...
And how the hell do you explain this madness?
I don't get it. If all these people are praying all over the world, and prayer is the answer; and God not only listen but is benevolent too; and the taxi driver who marvels over man-made skyscrapers thinks I can stand up against the wind if I just pray, pray, pray my f*ckin' brains out; and modern medicine is turning to God and not science; and pain, suffering, corruption, violence, discrimination, inequality, unnecessary death, and piercing nature's perfect skyline with shoddy materials is collectively, or at least widely, accepted as a bad affair, then on this "Merry" day, I have nothing to say other than a vapid Merry, Happy Whatever.
I know there are religious rationales for all of these atrocities. And I personally know from watching my uncle die that belief in a greater power and the saccharine fruits of after-life can ease the physical and emotional pain of a life-altering illness or waiting to die. Even I can acknowledge that this is a beautiful and deserved respite.
COME ON, TRY AND GIVE ME A SECOND DEATH, I DARE YOU*
Call me a GHB, or whatever you like, but I'm not feelin' God's love, nor am I looking for it - not for me or for man-kind.
I have many religious friends and family, and we know and respect each others' beliefs. And I appreciate, welcome, and am gracious for their prayers on my behalf. I even hope they'll work their magic so that I'll be healed by the power of the Lord (Virtual Sound Effect: emphatic accent on the "ea" in "healed" as in hEEEEEAAAAAAled).
I'm still not holding my breath or pressing my palms together. Strength and stamina is a precious commodity when you have transverse myelitis, but responsibility is not.
We need to take responsibility, a lot lot lot more responsibility. If there is a God, the poor guy has a lot of expectations to live up to, and as I've learned from my relationship research, expectations are the bane of all successful partnerships. Talk about a monkey on your back. I can't imagine how many ruptured disks the old man has.
Don't worry God, I'll give you some tramadol and Lidoderm patches, billions will pray for you, Palin will eventually eradicate the monkey "metaphor," and you'll be just fine.
While God may not be calling me names (I should hope not, I just offered to share my precious drugs with it), some might think me overly independent; under-ly optimistic; or a sinful, hell-bound devil. I'm cool with that. But there are a lot of people in this screwed up world that are either relying on God to take the initiative or aren't reaping the benefits of their selfless devotion. Not cool.
Pardon me Tammy Faye, but I don't believe there are too many blessed souls out there that can be healed by prayer alone. But if it were true, I'd be fired up and feeling an entirely different kind of blaze than the neuropathic pain I know so well.
Maybe my battle against TM would be easier, faster, clearer, more successful if I were a believer. Maybe it'd be just the same, but I'd be freed of the responsibility of my own recovery, and I'd have the time to focus my efforts on my real passions - making art, activism, celebrating life, and being as fabulous as I can be. Maybe I'd just have a greater community from whom I could gather support. Or maybe wrapping myself into a pretty little box, labeling myself with a $3.99 Hallmark mass-produced greeting card and setting myself under someone else's mass-produced eternal-life tree would give me the purpose of holiday godliness that heals all wounds.
I don't feel it's necessary to define one's values into one belief system. I've reconciled to label myself as a humanist, which isn't so much a religion, but a belief in the greater good of humanity - essentially agnosticism better defined.
Though there isn't a check box for humanism on Match.com, and it's not going to bring forth any godly mercy on my TM, it's a goddamn good definition for my beliefs and meditations on making this world a better place for all people. And that, as a sicko or non-sicko, is where I find my healing potential.
1 Info Please
2 Judaism 101: The Role of Women
3 Judaism 101: The Role of Women
4 All Great Quotes
* A New Heaven and a New Earth, the New Jerusalem - Revelation 21. 1-8
I've been hearing a lot about God lately.
Not from the man/woman/he/she/it/avatar in the sky; rather, from the mortal mouths of doctors, taxi-drivers, friends, and bar buddies. Although this escalating omnipresence of God seems apropos for the holiday season, especially directed at a sicko like me, I'm conflicted, doubtful, and perhaps, as my dear and devout Mormon friend endearingly refers to her loving, atheist husband, a GHB (godless heathen bastard).
IN THE BEGINNING...
I was reared in a "Conservative" Jewish household, meaning my family accepted all the values, rituals, and teachings of Judaism, but took a little leeway in how strictly we adhered to them, i.e., we stretched the Jew-truth a bit. Being conservative in this sense, is kind of like being fashionable on a budget - you buy just enough new pieces to stay hip, but continue to wear those classic standbys. (Sidebar: most "conservative" Jews are democrats)
Being a conservative Jew makes holy-state-maintenance accessible, and makes their minority status look hipper in the eyes of the masses.
Although my immediate family were fashion-Jews, we attended the Gemilas Chesed, an Orthodox synagogue, because that's where my mother went when she was a kid. It was also where most of the few Jewish kids in White Oak attended Hebrew School and Sunday School. (Not Quite Non Sequitur Sidebar: My family also kept kosher for years to accommodate our orthodox relatives.)
Interesting Fact 1: Orthodox Jews believe that religious Jews are divided into two main groups: Orthodox and Non-Orthodox. Orthodox Jews unquestioningly obey the Torah and all its rules. Non-Orthodox Jews try to adapt Judaism to modern life. Both groups observe the Jewish holy days.1
Unlike more limber denominations and other 'ologies, Orthodox Judaism is by the book, and that behomethic book's characters overfloweth with powerful, all-knowing he's and subservient she's. As my boobs began to grow and my rights began to shrink, the reality of my diminution within my own religion was disheartening, disconcerting, and discouraging for a burgeoning feminist.
I could share many "for instances", but that will further distract me from the point I'm ciruitously reaching, so I'll share one of my favorites:
My best girlfriend Amy, who has an elephantine memory, recalls that even though she and I were verifiably the best and fastest Hebrew readers, those awards went to the boys, while we received certificates for "Loyalty" and "Devotion" - excellent traits, no doubt, but fair is fair. Clearly, the awards were fixed.
Even though women take the back seat at services and lose many of their equal rights by the age of 13 (maybe that's why it's an unlucky number), their contradictory role - mainly childbearing, is held with the greatest esteem.
Interesting Fact 2: According to traditional Judaism, women are endowed with a greater degree of "binah" (intuition, understanding, intelligence) than men. 2This overwhelming feeling of inequality, second-class-citizen standing, and general male-ness-permeating Judaism was my teenage perception...and on that slant, I haven't wavered in 20 plus years.
Interesting Fact 3: Various rabbis at various times describe women as lazy, jealous, vain and gluttonous, prone to gossip and particularly prone to the occult and witchcraft. Men are repeatedly advised against associating with women. Women are discouraged from pursuing higher education or religious pursuits, but this seems to be primarily because women who engage in such pursuits might neglect their primary duties as wives and mothers.3
AND SOME FELL AMONG THORNS
Thus, my exodus from organized religion began. While, it may have been a bit thorny for my parents, I didn't feel a single prick as I loosened my ties to Judaism. I was imprinted, but I was liberated. Despite that, leaving one's religion isn't as simple as tossing away a dozen dead roses.
Parting is never easy, especially when it really pisses off someone you love. In my case, it wasn't God that was pissed, though many would disagree, it was my parents, and that rejection spawned some thorny times that are better left in the dumpster.
Rejecting mass belief systems, especially those that are exclusive and discriminatory, came naturally to me. Rejecting the Judeo-Christian God, and all of the transcendental shields and buckles that come pre-packaged (I love "accessories included") with that unwavering belief, was less arduous than Moses' journey, but took more than 40 days and nights.
Amy remembers me waffling between atheism and agnosticism since I was a pre-teen. Since then, I've tried to believe in God or different kinds of God beliefs, such as God is within all of us, or, well, that's about as far as I got.
Hey God, at least I tried.
AND THE TAXI-DRIVER SAID PRAY,
AND THE DOCTOR SAID IN GOD'S HANDS,
AND THE CO-WORKER SAID YOU'RE IN MY PRAYERS,
AND THE STRANGER SAID GOD WILL SAVE YOU, AND...
I'm still sick, and my uncle still died at the age of 43 of a brain tumor, and we're still at war, and soldiers and civilians are losing limbs and lives, and 100 million+ people are sleeping on cement, and my mother is still sad that she can't fix me, and an Egyptian schoolteacher has been sentenced to ONLY 6 years in jail for beating a student to death who didn't do his homework, and a man dressed as Santa shot a girl in the face, and Somalis have faced more violence in one year than in 10, and Bush served two terms, and money is power, and the government is controlled by stakeholders who keep life-saving cures behind white doors, and it's 60 degrees in Philadelphia in December, and fully-abled people don't offer a hand, and the US has the largest incarcerated population in the world, and women are being infibulated in Africa and the middle east, and..., and..., and...
And how the hell do you explain this madness?
I don't get it. If all these people are praying all over the world, and prayer is the answer; and God not only listen but is benevolent too; and the taxi driver who marvels over man-made skyscrapers thinks I can stand up against the wind if I just pray, pray, pray my f*ckin' brains out; and modern medicine is turning to God and not science; and pain, suffering, corruption, violence, discrimination, inequality, unnecessary death, and piercing nature's perfect skyline with shoddy materials is collectively, or at least widely, accepted as a bad affair, then on this "Merry" day, I have nothing to say other than a vapid Merry, Happy Whatever.
I know there are religious rationales for all of these atrocities. And I personally know from watching my uncle die that belief in a greater power and the saccharine fruits of after-life can ease the physical and emotional pain of a life-altering illness or waiting to die. Even I can acknowledge that this is a beautiful and deserved respite.
COME ON, TRY AND GIVE ME A SECOND DEATH, I DARE YOU*
Call me a GHB, or whatever you like, but I'm not feelin' God's love, nor am I looking for it - not for me or for man-kind.
I have many religious friends and family, and we know and respect each others' beliefs. And I appreciate, welcome, and am gracious for their prayers on my behalf. I even hope they'll work their magic so that I'll be healed by the power of the Lord (Virtual Sound Effect: emphatic accent on the "ea" in "healed" as in hEEEEEAAAAAAled).
I'm still not holding my breath or pressing my palms together. Strength and stamina is a precious commodity when you have transverse myelitis, but responsibility is not.
We need to take responsibility, a lot lot lot more responsibility. If there is a God, the poor guy has a lot of expectations to live up to, and as I've learned from my relationship research, expectations are the bane of all successful partnerships. Talk about a monkey on your back. I can't imagine how many ruptured disks the old man has.
Don't worry God, I'll give you some tramadol and Lidoderm patches, billions will pray for you, Palin will eventually eradicate the monkey "metaphor," and you'll be just fine.
Interesting Fact 4: The bible says, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy strength, and with all thy mind; and thy neighbour as thyself. And he said unto him, Thou hast answered right: this do, and thou shalt live. The Good Samaritan - Luke 10. 25-33.4
While God may not be calling me names (I should hope not, I just offered to share my precious drugs with it), some might think me overly independent; under-ly optimistic; or a sinful, hell-bound devil. I'm cool with that. But there are a lot of people in this screwed up world that are either relying on God to take the initiative or aren't reaping the benefits of their selfless devotion. Not cool.
Pardon me Tammy Faye, but I don't believe there are too many blessed souls out there that can be healed by prayer alone. But if it were true, I'd be fired up and feeling an entirely different kind of blaze than the neuropathic pain I know so well.
Maybe my battle against TM would be easier, faster, clearer, more successful if I were a believer. Maybe it'd be just the same, but I'd be freed of the responsibility of my own recovery, and I'd have the time to focus my efforts on my real passions - making art, activism, celebrating life, and being as fabulous as I can be. Maybe I'd just have a greater community from whom I could gather support. Or maybe wrapping myself into a pretty little box, labeling myself with a $3.99 Hallmark mass-produced greeting card and setting myself under someone else's mass-produced eternal-life tree would give me the purpose of holiday godliness that heals all wounds.
I don't feel it's necessary to define one's values into one belief system. I've reconciled to label myself as a humanist, which isn't so much a religion, but a belief in the greater good of humanity - essentially agnosticism better defined.
Though there isn't a check box for humanism on Match.com, and it's not going to bring forth any godly mercy on my TM, it's a goddamn good definition for my beliefs and meditations on making this world a better place for all people. And that, as a sicko or non-sicko, is where I find my healing potential.
1 Info Please
2 Judaism 101: The Role of Women
3 Judaism 101: The Role of Women
4 All Great Quotes
* A New Heaven and a New Earth, the New Jerusalem - Revelation 21. 1-8
12.21.2008
The Shortest Day, So Let's Make This Short
The Winter Solstice, which is today, is the shortest day of the year, and it's also symbolic of new beginnings and reversals. According to the not-so-reliable-but-so-convenient Wikepedia:
While physical exertion is out of my limits today and my singing would kill a newborn, the rest of it sounds like a damn good idea.
For those of us dealing with rare, painful, or incurable diseases, days are rarely "short." Seconds are minutes, hours, weeks, or even years. And no early sunset can change that.
LET'S GET BUSY REBIRTH'N
This has been no solstice day for me:
I'M CREATING A PARTY IN MY BODY, AND THAT'S THAT
But here's my theory for today. It's a holiday, or at least it's someone's holiday. That's reason enough for celebration.
Question to Self: But how does one celebrate, when the greatest length of nearly every day is mired in struggle, pity, pain, disappointment (name the negative, and it's probably on the guest list)?
Answer: Repeat mantra, "My Life Sucks, but I Rock." Shout over the needling voice and stomp on the internal clutter of debility, and have a toast to disease-induced depression, distraction, refraction, fatigue...the list goes on.
Symbolism is what we make of it. It doesn't have to last forever, but for at least tonight, I plan to take advantage of the inherent meaning of the day - stonewall the omnipresent The Nutcracker soundtrack that plagues homes and cities (and even MRI cubicles) this time of year, and get over myself and all the shit-crap-bitch slap-vexation that accompanies me even when I'm smiling.
"SHORT"
Wouldn't it be great if we could make any long story short? Ummm, excuse me, but no verbosity jabs please. I've had enough short-range punches this season.
I may not be attracted to short men, short leashes, homemade film shorts, short shorts, or any kind of pant that cuts above the mid thigh, and I've had it with short-term memory. And through repetition, the word short itself is really starting to irk me.
But at this (hopefully short) stage of my life, I'll take a short day - a second that really passes as a second or an hour that is only 60 minutes. Reality is such a foreign concept to people like us. But I'm going for it, and I haven't even had a cocktail yet.
Maybe tomorrow, I'll be reborn immune to personal suffering, or better yet, TM. Somehow, I doubt that, and I'm sure those of you who are or are not sick do too. But it's fun to ponder, especially when the idea is ours and not some doctor affirming best-case-scenario-only's, which lead to worst-case-disappointment.
While I may trust my doctors more than myself when it comes to my treatment, I'd rather be disappointed by an evening of symbolic role playing than someone else's bullshit optimism.
FINAL TOAST
So here's to the self-made moment - a good moment in real time with realistic expectations. And here's to not being able to meet those expectations but trying. And here's to life sucking but rocking despite that. And here's to my mother, brother, Marci, other family, friends, coworkers, and strangers who may hopefully not ever know what a challenge it is to control one millisecond in time.
And, of course, here's to recovery, or rebirth, or the Winter Solstice, or whatever you want to call it. We all need it in our lives for some reason or another.
Midwinter festivals and celebrations occurring on the longest night of the year, often calling for evergreens, bright illumination, large ongoing fires, feasting, communion with close ones, and evening physical exertion by dancing and singing are examples of cultural winter therapies that have evolved as traditions since the beginnings of civilization. Such traditions can stir the wit, stave off malaise, reset the internal clock and rekindle the human spirit.
While physical exertion is out of my limits today and my singing would kill a newborn, the rest of it sounds like a damn good idea.
For those of us dealing with rare, painful, or incurable diseases, days are rarely "short." Seconds are minutes, hours, weeks, or even years. And no early sunset can change that.
LET'S GET BUSY REBIRTH'N
This has been no solstice day for me:
- Asleep at 1AM, up at 4AM
- Seven hours of wrapping up outstanding personal, medical, and new apartment to-do-lists-and-last-minute help-from-mother-before-she-returns-to-Pittsburgh from 6AM - 1PM; still so much more to do
- Unwelcomed goodbyes
- My own further decline into transverse myelitis (TM) despite my recent plasmapharesis treatments and increased meds dosages
- Processing the guilt of forgetting a best friend's birthday because of my sweeping self-involvement
- Buying last minute holiday presents online for my brother, sister-in-law, and nieces while checking and cross-checking pay dates and bank account statements
- Wanting to buy gifts for everyone who has helped me through this period but being persuaded by my rational mother that this is neither the time to be spending so much money nor the expectation of my friends
- Processing that reverse responsibility
I'M CREATING A PARTY IN MY BODY, AND THAT'S THAT
But here's my theory for today. It's a holiday, or at least it's someone's holiday. That's reason enough for celebration.
Question to Self: But how does one celebrate, when the greatest length of nearly every day is mired in struggle, pity, pain, disappointment (name the negative, and it's probably on the guest list)?
Answer: Repeat mantra, "My Life Sucks, but I Rock." Shout over the needling voice and stomp on the internal clutter of debility, and have a toast to disease-induced depression, distraction, refraction, fatigue...the list goes on.
Symbolism is what we make of it. It doesn't have to last forever, but for at least tonight, I plan to take advantage of the inherent meaning of the day - stonewall the omnipresent The Nutcracker soundtrack that plagues homes and cities (and even MRI cubicles) this time of year, and get over myself and all the shit-crap-bitch slap-vexation that accompanies me even when I'm smiling.
"SHORT"
Wouldn't it be great if we could make any long story short? Ummm, excuse me, but no verbosity jabs please. I've had enough short-range punches this season.
I may not be attracted to short men, short leashes, homemade film shorts, short shorts, or any kind of pant that cuts above the mid thigh, and I've had it with short-term memory. And through repetition, the word short itself is really starting to irk me.
But at this (hopefully short) stage of my life, I'll take a short day - a second that really passes as a second or an hour that is only 60 minutes. Reality is such a foreign concept to people like us. But I'm going for it, and I haven't even had a cocktail yet.
Maybe tomorrow, I'll be reborn immune to personal suffering, or better yet, TM. Somehow, I doubt that, and I'm sure those of you who are or are not sick do too. But it's fun to ponder, especially when the idea is ours and not some doctor affirming best-case-scenario-only's, which lead to worst-case-disappointment.
While I may trust my doctors more than myself when it comes to my treatment, I'd rather be disappointed by an evening of symbolic role playing than someone else's bullshit optimism.
FINAL TOAST
So here's to the self-made moment - a good moment in real time with realistic expectations. And here's to not being able to meet those expectations but trying. And here's to life sucking but rocking despite that. And here's to my mother, brother, Marci, other family, friends, coworkers, and strangers who may hopefully not ever know what a challenge it is to control one millisecond in time.
And, of course, here's to recovery, or rebirth, or the Winter Solstice, or whatever you want to call it. We all need it in our lives for some reason or another.
12.17.2008
Subjective, Objective, Fact, Figure, Data, Ativan Hangover, Expectations, Boohaha
Guess what? I'm tired, frustrated, and I got my Ativan! So, this short update is going to be full of wonderful typos, blips, and hopefully nothing i will be embarrassed of tomorrow.
THE JOHNS HOPKINS SHORT-VERSION ADVENTURE UPDATE
My mother and I left this morning at 7AM for my 11AMappointment with Dr. Par
do at Johns Hopkins National Research Center for Transverse Myelitis and got home at 10Pm.
Gre
at Uncle Avrum (who we both call Avrum; he's 2 years older than my mother), who lives in Baltimore, picked us up at the train station and stayed with us the entire day as our familial-happy-to-do-so-chauffeur-with or (mostly) without us-waiting room-sitting-good-conversationalist-support.
SKIP AHEAD AND BACK AND SOMEWHERE ELSE
Right now I'm hungover on Ativan (TONIGHT'S USE: sedation so that my Myocolonus doesn't turn my 2-hour 3-body-part MRIs on "more sophisticated equipment into a 10-hour engagement), enjoying my favorite and healing screwdriver, just finished a few M&Ms (see Friday Night & the 10 Distractions for the familial benefits of M&M®s) and my night meds cocktail, which could put a horse to sleep (apparently I am more of a rhinoceros), laying in bed and trying to make sense of the day.
Subjectively, I'm frustrated as hell. I expected to go in there, have the docs say, OK, you have transverse myelitis (TM), your treatment isn't working, let's try X, Y, Z.
Instead, after 10 hours of doc visits (we were almost never left alone) and more tests, and orders for more tests, and more specialists visits, I'm more in the dark (literally...my vision is going in my left eye), than I was before.
Objectively, which I have no capacity for at this moment, my mother and the few and very intelligent friends whom I spoke to this evening felt that this is the right path. That the treatment and repeat treatments that I've been having aren't working, so obviously there's some globally larger issue that needs to be solved. Which is basically, what the docs at JH said. And who better to solve it than the leaders of TM and neurology?
But i love my doctor here. He makes me feel hopeful. He gives quick answers and quick solutions. Unfortunately, none of which seem to be working...as well as I'd like them to...or support the data timeline for a healthy prognosis.
So here's the quick synopsis from a tired-blurry-eyed, subjective, sicko of what the experts at JH are thinking/doing:
That's it for now. No realizations. No mellifluous writing. Just the facts. But it beats "being in the dark", which I'm about to do with great gladness.
THE JOHNS HOPKINS SHORT-VERSION ADVENTURE UPDATE
My mother and I left this morning at 7AM for my 11AMappointment with Dr. Par
do at Johns Hopkins National Research Center for Transverse Myelitis and got home at 10Pm.Gre
at Uncle Avrum (who we both call Avrum; he's 2 years older than my mother), who lives in Baltimore, picked us up at the train station and stayed with us the entire day as our familial-happy-to-do-so-chauffeur-with or (mostly) without us-waiting room-sitting-good-conversationalist-support.SKIP AHEAD AND BACK AND SOMEWHERE ELSE
Right now I'm hungover on Ativan (TONIGHT'S USE: sedation so that my Myocolonus doesn't turn my 2-hour 3-body-part MRIs on "more sophisticated equipment into a 10-hour engagement), enjoying my favorite and healing screwdriver, just finished a few M&Ms (see Friday Night & the 10 Distractions for the familial benefits of M&M®s) and my night meds cocktail, which could put a horse to sleep (apparently I am more of a rhinoceros), laying in bed and trying to make sense of the day.
Subjectively, I'm frustrated as hell. I expected to go in there, have the docs say, OK, you have transverse myelitis (TM), your treatment isn't working, let's try X, Y, Z.
Instead, after 10 hours of doc visits (we were almost never left alone) and more tests, and orders for more tests, and more specialists visits, I'm more in the dark (literally...my vision is going in my left eye), than I was before.
Objectively, which I have no capacity for at this moment, my mother and the few and very intelligent friends whom I spoke to this evening felt that this is the right path. That the treatment and repeat treatments that I've been having aren't working, so obviously there's some globally larger issue that needs to be solved. Which is basically, what the docs at JH said. And who better to solve it than the leaders of TM and neurology?
But i love my doctor here. He makes me feel hopeful. He gives quick answers and quick solutions. Unfortunately, none of which seem to be working...as well as I'd like them to...or support the data timeline for a healthy prognosis.
So here's the quick synopsis from a tired-blurry-eyed, subjective, sicko of what the experts at JH are thinking/doing:
- They will make no absolute diagnosis without all the data (the hospital did not send all of my records)
- They think my TM is part of larger neurological disorder and immunological disorder
- The next treatment path, if they verify the TM, will be chemo
- My current doctor is against this treatment path for women of childbearing age (but who wants to have children with a vision-balance-challenged gimp anyway! :)
- I need to see a neurological ophthalmologist for my lack of ability to recognize light or color or peripheral sight out of my left eye (I better not need a new prescription; just got fab new glasses). Great...another specialist.
- i should not be walking around with a permacath extruding from my body as it poses serious infection health risks. Duh.
- I had some super T3 MRI of my brain/Cervical/Thoracic Spine with GAD.
- Results from the new MRIs should be back tomorrow or next week.
- More blood work this week.
- The technician was very cute, flirtatious, and flattering, but I hope for my sake i don't have to see him again...there...tho the attention was nice.
That's it for now. No realizations. No mellifluous writing. Just the facts. But it beats "being in the dark", which I'm about to do with great gladness.
12.15.2008
Just Another TM Monday...Ohhhwayo
This Mel update may be terribly boring for some, voyeuristically curious for others, or just an appreciated update of what is actually going on in my life for family & friends.
Any way, let me introduce to you:
Just Another TM Monday: 24 hours of a mostly typical Mel-day in annoyingly elaborate detail and occasionally missing moments that may have been forgotten or ommitted due to short-term memory, writer's license, or I was just too damn tired and lazy
AUTHOR's NOTE: This post is based on last Monday, but due to the ever-pressing responsibilities of work, plasmapharesis, and trying to be fabulous despite my TM, I didn't finish it until Thursday. And posting a Monday post on Thursday was just too anti-climactic, even for a person with a disease that removes that word, in most of its meaning, from their life.
12:00AM - 1:00AM
Any way, let me introduce to you:
Just Another TM Monday: 24 hours of a mostly typical Mel-day in annoyingly elaborate detail and occasionally missing moments that may have been forgotten or ommitted due to short-term memory, writer's license, or I was just too damn tired and lazy
AUTHOR's NOTE: This post is based on last Monday, but due to the ever-pressing responsibilities of work, plasmapharesis, and trying to be fabulous despite my TM, I didn't finish it until Thursday. And posting a Monday post on Thursday was just too anti-climactic, even for a person with a disease that removes that word, in most of its meaning, from their life.
12:00AM - 1:00AM
- Feelin' down, tired but abnormally frisky - like I've slept all day and I want to get out of the house and see the world and feel pretty kind of frisky.
- Attend Koresh Dance Company after party at Time with friend-professor-artist-ex-boyfriend Mat, despite wanting NOTHING to do with dance world.
- Enter - armed in my new Sorel snow boots, other winterly accouterments, and punk rock cane.
- See ex-husband for 1st time in 1 year. Flinch. Nod. Smile.
- Neuro-walk toward him; long-story short: he learned the day before of my TM.
- We reconcile. "Life is too short."
- Hold back tears while drinking screwdriver bought by ex-husband.
- Cane-"dance" to ex-husband's music, much of which is also on my Ipod. (He was the DJ)
- Prevail 3 minutes on two feet.
- Attempt seated chair dancing. (I have obviously lost any sense of pride.)
- Sustain 1 minute.
- Return to Screwdriver at bar.
- Reciprocal flirt (just a teensy subtle bit) with secretly unavailable man I have no interest in.
- Calm friends and strangers as they react to my bloody, mutilated sternum.
- Meet unavailable man's wife - stupid drunk, stupid happy, stupid cute.
- Cab ride home.
- Take night meds.
- Crash on couch to ubiquitous Law & Order playing on my new 32" flat screen.
- Wake up hungry. Hadn't eaten since noon Sunday.
- Shovel down 1/3 of what's leftover of 5-day old Thai leftovers and hope for best while watching info-mercial. Any result could be a positive. Maybe I'll actually go to the bathroom!
- Sleep in bed. Cuddle with cats.
- Wake up. Why?!
- Awake & doleful - in various kinds of full-body neruo & post-surgical pain.
- Attempt work on copy doc with ensuing deadline.
- Suffocate on self-inflicted stress and double vision.
- Sleep more.
- Daily alarm off. Uggh. Snooze. Uggh. Snooze. Up. (Note: "Up" in TM world is more of strategic slow-mo side roll, peel/push torso to sitting.)
- Lift self out of bed with support of cane.
- Neuropathy already overwhelming focus.
- Make coffee.
- Feeling relieved about reconciliation with ex, but agitated by pain.
- Feeling irritated by pain and fact that I "kind of" got "stood up" Saturday night. What man wouldn't at least want to take the opportunity to be sitting distance from a woman with four boobs and 5 nipples! A dream come true!
- Agitation and irritation turning to frustration and anger.
- Refocus - "remember Dr. Schwartzman's orders: none of this is good for TM."
- Listen to Ganesh meditation online.
- Lose focus and switch to another Web site before completion where I can spend money I don't have .
- Imagine myself not spending money. Yuck.
- Imagine myself meditating.
- Imagine alter, props. See dollar signs.
- Question: clothes, furniture, co-pays, job security, meditation? hmmmm.
- Priorities? Confused. Conflicted.
- Try to work on copy doc. Failure.
- Yikes. Have to be at Hahnemann for plasmapharesis treatment in 2o min.
- Wipe last night's stink off with bath wipe, e.g., "whore's bath."
- Skip face, smudge mascara under-eye lids into cats eyes. Wow. It works.
- Dress.
- Pack bag.
- Grab slice of bread and down orange juice. (I skimped on the pre-pharesis meal requirement; figured my late night "binge" counted for something.)
- Super-woman hobble to elevator.
- Wait for an f'ing cab. Is everyone afraid they'll be blown over by the wind in this city too?
- Put rest of bread in pocket. If I'm not making this appointment, I'm not forcing myself to eat.
- J.J., best doorman in philly, finally triumphs over the cab battle.
- Can't push front building door open against the wind. I am weaker than usual.
- Call plasmapharesis for 2nd time letting them know I'm on my way - strict 15 min. grace policy means no pp for Mel today.
- All is cool. Someone else's cancellation saves the plasmapharesis day. Pull bread crumbs out of pocket. Eat.
- Plasmapharesis.
- Hurts to feel bed against my skin.
- Fall asleep watching my blood swim out of my body, and wishing my final appeal against Aetna, which at this date is not looking good per my pro bono attorney Jennifer Jaff, comes through. When last appeal is over, I must write about more Jennifer and this case.
- Sleep through most of treatment, except when they wake me for calcium supplements. Lisa gives me the flavors I like - strawberry first, then orange.
- Take morning meds. (Plasmapharesis would have just heaved them out of my system).
- Rheumatologist appt. with Dr. Huppert, nicest Rheumie in Philadelphia.
- In and out of sleep in waiting room. He offers to take my coat and hang it for me. He's running 1 hour behind. Acceptable, considering how nice he is. Not acceptable considering I MUST get back to work (from home).
- Cortizone injection in left hip. This one hurts.
- Last injection in posterior hip still working.
- Doc: "See me in 2-4 weeks. Let's get an MRI of that hip."
- Me (in my head in 1 seconds time): "Great - more tests, more visits to Hahnemann, more time out of the office. ATAVAN?!"
- Me (out loud): "Thanks. Goodbye. Gotta go. Bye...Bye..."
- Home. What a frickin' mess.
- Get online. IM boss, "Honey, I'm home! And I'm working!" Really. I am.
- Take afternoon meds.
- Life Alert guy supposed to show up to install equipment. No show. No call. Or I just haven't figured out how to check my home phone voice mail.
- Kris from IG Living calls to check in. We chat about my case against Aetna, test results, and her two very inspiring boys who have autoimmune. I could talk to her for hours. I must write more about her another time. "Kris, I'd love to chat more, but I have to go. I have a 2PM work conference call.
- Home phone rings. Work conference call for major deadline. Exchange pleasantries. Everyone's sick - with cold.
- Momentary feeling of superiority matched with typical Mel compassion: A. ) Have they ever heard me complain about my sickness at work? Don't think so. (But probably) B.) It sucks being sick and having to work. Hell, it just sucks being sick "period."
- Cell phone rings. Mute other phone. It's Jennifer...sounding concerned. Gotta go. Call you back in 90 min.
- Cognitive problems at extreme today; having trouble articulating my answers to bosses questions.
- Feel like a moron.
- Explain. Apologize. Repeat.
- Account Exec asks how many product pages I've finished writing.
- I lie. 50%.
- Additional changes to copy clarified - kind of.
- 3PMish: Get disconnected. Meeting still going.
- Call to get back on; IM co-workers to let them know I'm off call.
- No one calls me back.
- Self-doubt. Is my disease making me less important?
- Wait for call...work on copy doc. Need to get to 50% by tomorrow AM.
- Wait for call...work on copy doc.
- Wait for call.
- Give up. Move on.
- Call Jennifer. She's more animated than normal. Case against Aetna is looking hopeless, and this is our last chance. None of my docs keep good records. Expense of getting records rising. Gives me to do list. Put to do list in my Entourage.
- Get back to work.
- Overwhelmed. Exhausted from treatment. Ghosts of The Drake continue to poke, pinch, punch, squeeze my body head to toe.
- Call mom on cell. No answer. At work. No answer.
- Lie down on couch. It hugs me. Fall asleep.
- Wake up. Pain lessened.
- Call mom. We split Jennifer's to do list. Overextended, overwhelmed feeling lessened.
- Write, write, write, write.
- First time since Sept that I feel remotely lucid. Clarity is energizing.
- Take short break to call friend John. Wanted to call him earlier, but who wants to talk to a depressed, tired, miserable Melanie? Not me.
- Take evening meds.
- Nearly make it to 50% of product pages, and some damn good commercial writing too. Good enough.
- Email copy doc to self.
- Take bedtime meds.
12.14.2008
TM - Philly Style: Network Euphoria & Solo Depression
As I was limping through Saturday night pre-holiday packed streets of Philadelphia, I passed thousands of couples and groups of friends. Since I was alone, I could do as much wondering as my mind could handle. I wondered how they met, what attracted them to each other, what kept them together, who they were buying chocolates for, and what they had in common.
WARNING: I'M ABOUT TO DISGUISE MY OPINIONS AS GROSS GENERALIZATIONS
We choose our mates and friends based on similar interests. Lovers and friends don't need to have everything in common to build a relationship, but I bet the best ones possess something mutually unique that makes their bond work in both the short and long term.
When our lives are seriously altered, it doesn't have to mean that we can't still relate to our peeps or receive the same gifts of their presence in our lives as we always have. They have the best intentions in easing our pain and suffering, but when sympathy becomes the main force of our relationships, the word itself starts to snip into the fibers of the dialogue and interaction that once was so enticing to make us friends.
There's a reason why sympathy and empathy live so far apart in the dictionary, despite their complimentary roots. And while sympathy can be comforting in small doses on the right occasion from the right person (this requires profound intuition), it's also frequently uncomfortable and tiresome and ultimately places way too much emphasis on our illness, which we try so hard to forget.
Empathy takes us a lot further into understanding our own condition and it provides a platform from which to evolve from our situation. While there are occasions that the people in our lives can meet the definition of these two similar wor(l)ds, when one's "serious alteration" is a rare disease, it's equally as rare that this can happen.
ONE IN A MILLION
Before I had Transverse Myelitis (TM), I never entered a chat room, didn't have a Facebook profile, the only networks I belonged to were ones that furthered my career, and the only support group I ever attended was for one of those "serious alterations", which was the tragic death of my father when I was 18, and in my 6 weeks there I don't believe I said more than a few words.
Since my TM diagnosis in September, and the continuing revolt of my body and mind, connecting with other people with TM has become a mission. While recovering is my top priority, having a network of support is as important to that recovery as the treatment, meds, and rehab.
Considering there are only 1400 new cases diagnosed globally each year, finding those people would and did seem impossible. During the two weeks after my first hospitalization, I spent my waking hours (which, as a result of high-dose steroids were most of the 24 in a day) researching TM, seeking a local support group (there are NONE in Center City), and following up with my other friends with various serious illnesses that I had met in the hospital.
While I found two great online forums for TM that offered virtual support and education (see "TM, Neuro, SCI: Social Groups, Support Networks, and Chat Rooms" links in the right column), I was disheartened and moderately outraged that there was nothing local in such a major city.
Having a rare disease with no clear path or prognosis is terrifying, and even though TM manifests differently in most of us, only other TM'ers can truly understand the myriad emotions and and physical pain that accompanies it.
Despite the unsteadiness of my state, my activist spirit was still sturdy, and I started Transverse Myelitis Philadelphia, a networking group for locals with TM. We began with 2 members and today we have 10, 9 of which have TM. We had our first gathering tonight, 4 of us were there, all of whom had very different TM experiences, from total paralysis to mild numbness.
I was the only one with a cane, Jocelyn was the only one who had developed MS, John was the only one who went from paralysis to completing a triathlon, and Denise was the only one who had become completely paralyzed from the neck down within two hours but considers herself 90% recovered eight years later.
If you watched us interact, it was as though we had known each other forever. In fact, having TM feels like forever, so maybe that immediate connection was just a natural bridge from our own unique experiences. And all of us have engaged in jobs or side projects to advocate, fund raise, or find cures for TM.
It was invigorating, inspiring, and surprisingly moving to be in their presence at once. And although, I felt all of this, that's also when emotional Melanie emerged, precisely as I was in the bathroom releasing my neurogenic bladder. Who knew there was a pee-mind connection?
Perhaps it was just talking about it for two hours with total frankness and disclosure, but instead of coming home gleaming from the understated empathy that exists among fellow TM'ers and the sense that I made three great new friends, my pee-mind-emotional connection persisted.
A REACTION AS IMBALANCED AS THE ISRAELI-PALESTINIAN CONFLICT
I may have lost the activist tenacity of the old Melanie (I was too tired to attend today's WILPF Middle East Committee meeting, of which I'm a member), but I'm still allowed to throw some politics into my posts. It's my blog after all.
So here it is, my first video diary captured with iMovie, in all its sappiness, sadness, hopelessness, and irrationality. I should be ashamed and embarrassed to post this, but these emotional discrepancies are part of the TM process, at least as I have experienced it.
According to the article, Demoralization and Depression in Multiple Sclerosis and Transverse Myelitis, by Adam Kaplin, MD PhD, my depressive response is actually normal:
WARNING: I'M ABOUT TO DISGUISE MY OPINIONS AS GROSS GENERALIZATIONS
We choose our mates and friends based on similar interests. Lovers and friends don't need to have everything in common to build a relationship, but I bet the best ones possess something mutually unique that makes their bond work in both the short and long term.
When our lives are seriously altered, it doesn't have to mean that we can't still relate to our peeps or receive the same gifts of their presence in our lives as we always have. They have the best intentions in easing our pain and suffering, but when sympathy becomes the main force of our relationships, the word itself starts to snip into the fibers of the dialogue and interaction that once was so enticing to make us friends.
There's a reason why sympathy and empathy live so far apart in the dictionary, despite their complimentary roots. And while sympathy can be comforting in small doses on the right occasion from the right person (this requires profound intuition), it's also frequently uncomfortable and tiresome and ultimately places way too much emphasis on our illness, which we try so hard to forget.
Empathy takes us a lot further into understanding our own condition and it provides a platform from which to evolve from our situation. While there are occasions that the people in our lives can meet the definition of these two similar wor(l)ds, when one's "serious alteration" is a rare disease, it's equally as rare that this can happen.
ONE IN A MILLION
Before I had Transverse Myelitis (TM), I never entered a chat room, didn't have a Facebook profile, the only networks I belonged to were ones that furthered my career, and the only support group I ever attended was for one of those "serious alterations", which was the tragic death of my father when I was 18, and in my 6 weeks there I don't believe I said more than a few words.
Since my TM diagnosis in September, and the continuing revolt of my body and mind, connecting with other people with TM has become a mission. While recovering is my top priority, having a network of support is as important to that recovery as the treatment, meds, and rehab.
Considering there are only 1400 new cases diagnosed globally each year, finding those people would and did seem impossible. During the two weeks after my first hospitalization, I spent my waking hours (which, as a result of high-dose steroids were most of the 24 in a day) researching TM, seeking a local support group (there are NONE in Center City), and following up with my other friends with various serious illnesses that I had met in the hospital.
While I found two great online forums for TM that offered virtual support and education (see "TM, Neuro, SCI: Social Groups, Support Networks, and Chat Rooms" links in the right column), I was disheartened and moderately outraged that there was nothing local in such a major city.
Having a rare disease with no clear path or prognosis is terrifying, and even though TM manifests differently in most of us, only other TM'ers can truly understand the myriad emotions and and physical pain that accompanies it.
Despite the unsteadiness of my state, my activist spirit was still sturdy, and I started Transverse Myelitis Philadelphia, a networking group for locals with TM. We began with 2 members and today we have 10, 9 of which have TM. We had our first gathering tonight, 4 of us were there, all of whom had very different TM experiences, from total paralysis to mild numbness.
I was the only one with a cane, Jocelyn was the only one who had developed MS, John was the only one who went from paralysis to completing a triathlon, and Denise was the only one who had become completely paralyzed from the neck down within two hours but considers herself 90% recovered eight years later.
If you watched us interact, it was as though we had known each other forever. In fact, having TM feels like forever, so maybe that immediate connection was just a natural bridge from our own unique experiences. And all of us have engaged in jobs or side projects to advocate, fund raise, or find cures for TM.
It was invigorating, inspiring, and surprisingly moving to be in their presence at once. And although, I felt all of this, that's also when emotional Melanie emerged, precisely as I was in the bathroom releasing my neurogenic bladder. Who knew there was a pee-mind connection?
Perhaps it was just talking about it for two hours with total frankness and disclosure, but instead of coming home gleaming from the understated empathy that exists among fellow TM'ers and the sense that I made three great new friends, my pee-mind-emotional connection persisted.
A REACTION AS IMBALANCED AS THE ISRAELI-PALESTINIAN CONFLICT
I may have lost the activist tenacity of the old Melanie (I was too tired to attend today's WILPF Middle East Committee meeting, of which I'm a member), but I'm still allowed to throw some politics into my posts. It's my blog after all.
So here it is, my first video diary captured with iMovie, in all its sappiness, sadness, hopelessness, and irrationality. I should be ashamed and embarrassed to post this, but these emotional discrepancies are part of the TM process, at least as I have experienced it.
According to the article, Demoralization and Depression in Multiple Sclerosis and Transverse Myelitis, by Adam Kaplin, MD PhD, my depressive response is actually normal:
"The brain has numerous functions. It is not hard for people to understand that the brain controls nerves that wire our muscles and that when people have MS or TM, the muscles may not work as they should...People do have a difficult time understanding that there is a part of the brain that regulates our moods....You can view the entire presentation on which this article is based.
There are many conditions that will cause depression, but transverse myelitis and multiple sclerosis are the record holders. There are higher rates of clinical depression in TM and MS than in any other conditions. MS has the highest rates of depression ever described, and that is because this condition attacks the brain in a specific way, and that attack leads to depression.
12.12.2008
Friday Night Fire & the 10 Distractions
THE BACK, BACK SOMEWHAT TANGENTIAL STORY
In my family, when the goin’ gets tough, the tough eat Peanut M&M®s. Look in our freezers, and you’ll find at least one, but more likely 2-3 super-sized bags of M&Ms, as well as Vodka. In fact, my freezer is composed of:
I wouldn’t be surprised if we’ve kept Mars Inc. and myriad vodka companies in the black through these harsh economic times.
While peanut M&Ms and a Screwdriver work wonders on emotional stress, these treats aren't quite potent enough to put out the relentless fire in my body. Nor are the 30+ pills I take every day, or the vampiric tri-weekly plasmapharesis treatments, both of which have been prescribed to do precisely that, among other wizardly healing.
FIRE STARTER
The fire in my legs—and arms, and neck, and torso, and face—is hot pill-sized bubbles of exploding cherry bombs and muskets that burst like popcorn on the stove, a nuked porcupine, and Mozart's Die Entführung aus dem Serail from my bones to my skin. It’s relentless as Greenpeace volunteers on 15th Street, ubiquitous as Law & Order and its multiple incarnations on cable, and distracting as a new relationship (but that delivers an entirely inverse tingle).
Incontinence can’t extinguish it. A hot bath is a no no. Gabapentin may diminish it, but the alarms are still blaring. Tramadol swilled with a glass of wine can occasionally do the trick, but it takes a lot of follow-through, and too much alcohol is bad (but oh so good) for a vertically-challenged disabled girl on steroids and a narcotics rainbow.
Unless we’re doctors, anything that transpires inside our bodies, is usually impalpable. As a dancer, I spent my career coercing a deep mind-body connection. And as much as I experienced that, it doesn’t make a damn difference now.
Half of my body is numb. My mind doesn’t know my anatomy exists, cold or heat don’t care if it touches my skin, my dangling earrings mourn they perceived loss of their mate, and the air that once danced against body is just distance between me and where I need to get to next.
And despite all this lack of feeling, I feel the fire. And I feel frustrated and exhausted and limited. I’m supposed to be getting better. I’m supposed to be the queen of the dance floor. I’m supposed to be happy, charming, intelligent, sexy, flirtatious, and a joy to be around. But I’m on fire and there’s nothing sensual or flashy about it.
BLAZING THROUGH
So how does one deal with the pain and exhaustion of Transverse Myelitis (TM), and its blood-plasma-life-force-sucking treatments and mind-altering drug menu?
Obviously, the way I phrased this question, although grammatically correct, is pretty damn stupid. Everyone deals with pain, suffering, discontent, and disappointment differently.
I’m trying to maximize the healing components of my new mantra, My Life Sucks, but I Rock, a somewhat contemporary meditational approach to pain and suffering. Although it’s a great ego aid, which is a sanity necessary for most with a chronic or debilitating disease, especially one that is outwardly visible, its vessel for healing isn’t bountiful enough to hold all the fire extinguishers in Pennsylvania. And it certainly can’t hold a muscular, grease-covered fireman with the strength to sweep me off my feet, vacuum my apartment, assemble my new furniture, or screw me mindless until I'm blissfully numb.
While there isn’t any sexual healing happening in my apartment, I have found distraction to be the best therapy for pain management and its emotional side effects, and it comes in many human and non-human, and active and passive forms.
There are many distractions I have found that work, and I’ll address all of them eventually. But in this post, I’m talking about Friday Night Distractional Healing after a 5AM-8PM work-treat-organize-get-on-with-it day comprised of plasmapharesis, somewhat deserved angry text messages and emails, fighting Aetna, work, work, work, my first and humbling Life Alert installment, wearing the ugly and way too big bracelet that goes with it, a 5:30 therapy appointment, and assembling the very cool and on sale tree candle holder, only to find that the glass votives were broken.
FRIDAY NIGHT FIREMAN TO THE RESCUE – PART I: PARTY TIME?
Fantasies aside, my Friday night fireman, came in the guise of an invitation from two friends (that means fireMEN!) to a holiday work party at one of the top landscape architecture firms in the country.
SCENE:
As they skulk along with the hoards of traffic along the Schuylkill express way, firemen, Mat and Jesse, run out of work talk and decide to call the sick, disabled, moody, frequently tired, yet occasionally charming and glamorous Melanie. Not knowing what to expect from their drive or their philanthropic phone call, they take turns staring out into traffic and back and forth at each other, while stealing potluck cookies from the Tupperware in the back seat.
ACTION:
Firemen dial, while swallowing the last bite of a chocolate cookie:
“We’re going to a party, not sure what to expect. We’re stuck in traffic, but we could pick you up in 30.”
ACTION:
Dull, tired, unshowered, undressed Melanie responded:
“Sounds like fun, but I had treatment today, and I should really take it easy, plus my cognitive abilities are on the demise, I don’t think I’ll be much fun to be around.”
ACTION:
And the firemen said:
“It might be boring, anyway.”
ACTION:
Then recently-former-good-time Melanie said, waffling on her lame evening forecast, but still certain it was the best choice and she wouldn’t follow through on her suggestion:
“Why don’t you go, call me when you get there, and if it’s not boring, I’ll grab a cab and meet you.”
ACTION:
As she imagined her single-woman evening itinerary of fire-bound legs attached to her couch and tremoring fingers stuck to her remote, she recalled the discussion she had just one hour ago with her therapist about her lack of single friends and touch and human interaction, and how having more of these things in her life might make living with TM a little easier, she saw a golden flash of young, hot architects dressed in tight black jeans, with equally tight asses and pretty faces prancing before her, and she said with understated appreciation:
“Alright, I’ll come, I can always grab a cab home. How long do I have to make myself beautiful?”
Going to a party is like getting married. You gotta look your best and there’s always a way out. And fortunately, the way out generally isn’t as painful or arduous as divorce.
Luckily, I have discovered and purchased Cinderella beauty products and a wardrobe just for these occasions. They couldn’t have saved my marriage, but they do make it possible for a disabled, disfigured, chronically sick and tired woman, such as myself, to look and smell good as the occasion required.
THE 10 DISTRACTIONS
We arrived at the party, and although I was still on fire in a bad way, I felt hot in a good way. I was wearing my latest purchase from Joan Shepp (a luscious dress that had material gentle enough and strategically placed enough to almost cover both of my extruding catheters). In preparation, I had loaded on the Nars Laguna/Orgasm bronzer duo so I had a deceivingly healthy glow, and weighted my wrist with enough bracelets to cover the hospital bands.
To our surprise, the party was bangin’—rife with hip and happening people of all ages, numerous and beautifully laid out food stations, music that could even make a frozen shoulder dance, and free booze.
TM or no TM, I know how important human interaction is to my quality of life. But large crowds make me uncomfortable. There’s the overstimulation (people with TM have hyper-reflexes and responses), the fear of getting knocked over, and public incontinence, just to name a few.
Distraction 1:
Open Bar
This was a large crowd, but one gabapentin and two glasses of savingon blanc later, and I was prepped to navigate its labyrinthine layout and all the beautiful and friendly-faced people.
Distraction 2:
Get cerebral
I often wonder what people are thinking when they smile at me and my various props. I’ll get into more detail about this topic in a future post. But for tonight, it gave me the opportunity to escape the dizzying lights and get into my head.
Distraction 3:
Beauty
Hot guy walks by, and then another, and then another…but I’ve set my sights on one. (Note: this may be counter-sexism, but eye candy is still candy, and I believe I deserve a little extra candy for now.)
Distraction 4:
Small Talk
Alice, a very effective small-talker, introduces herself as a wife of someone who works at the firm. I introduce myself as an ex-girlfriend of someone who used to work at the firm. I silently pat myself on my back for my wit. We laugh and move on.
Distraction 5:
Genuine Conversation
Tell Mat about hot guy #1. He says, really? I say, yes. He says, what are you going to do about it? I say, posed as a statement, not a question, why don’t you introduce yourself to him and then, of course, him to me. He says with resolute reluctance, we’ll see.
We look at the spread of food before us, and despite my lack of appetite, I eat something unidentifiable in the dim lights and appreciate the texture in my mouth. I prop myself on someone’s workstation to rest my legs and wonder why no one is dancing.
Distraction 6:
Meet & Greet
Meet Alyssa and Frank—the most adorable and friendly married couple in Eastern Pennsylvania.
Alyssa too wonders, although out loud, why is no one dancing? I want to dance. She sees my cane for the first time and apologizes for what she considers to be a blunder. There’s such a thing as cane-dancing, I say responding to the fear on her face, but the music has gone downhill, a couple generations and not the musically prolific ones, so we agree to wait for the next good song.
Distraction 7:
Hot guy #1 in Close Proximity
Alyssa says he is the sweetest guy in the world with the cutest accent ever. I ask, would he be interested in a woman with a badass cane? Superficial, I know. But presentation is where these things begin.* She looks me up and down with total sincerity and compassion. Yes, she says.
Courage restored.
Alyssa introduces us. We all chat. I try to hide my cane behind me. Good music returns. Alyssa, Frank, and I take off to fill the void of an empty dance floor bitterly juxtaosed against flawless hip-gyrating music. Hot guy #1 says, I’ll join you later.
Distraction 8:
Bonding
Alyssa and I have bonded en route to the makeshift dance floor. We agree to stay in touch. We agree that we need more friends with joy and spirit. Basically, we agree.
Distraction 9:
Dancing
I know I shouldn’t. I know I will spend Saturday in bed and in pain. I know I can't tear up the dance floor like the old Melanie could. But, I’m feeling the music and forgetting the fire, and it feels so good to move my body.
I don’t feel the air against my skin, yet sound waves still reach my joints and my pelvis is making its mark, even if my feet aren’t’ burning a whole in the dance floor.
Distraction 9:
The Stare
I feel the music, but I also feel the people watching me, thinking, oh look at that disabled woman dancing. How sweet?
But then I realize, I still have more tenacity than the fully-abled dancers. So maybe they’re thinking, what the f*ck is wrong with me? Why aren’t I taking more risks. Why aren’t I checking my baggage at the door? Why aren’t I going for it?
Who knows. Who cares. At this point, I’m back into my private dance world, and more and more people are joining in.
Distraction 10:
Diseased Body Realizes its Limits
I got so lost in feeling human—in the interaction of dancing with new friends and strangers, the possibility of hot guy #1 finding my still-decent-yet-unknown-to-the unknown-eye-limited moves enticing, of the fan blowing the layers of my dress into its own dance—that I danced too long and too hard and too damn good.
And now I cannot hold myself up. Now I need help. I hate needing help.
FRIDAY NIGHT FIREMAN TO THE RESCUE – PART II: WITCHING HOUR
This is where the Cinderella story ends. And it’s actually midnight too.
I grabbed onto my fireman, asked him to hold me up and keep me from stumbling, get me through the crowd and the 300 yards to the exit to save my dignity and my ass or head from another bad fall.
As he walked me outside to get a cab home, I remembered what I had said to him last week: I'm not going dancing again until I get better. The pain isn't worth the joy.
I reneged on my promise to myself, and I’m glad I did.
The next day, the results will be a return to fire and other pains and unpleasant distractions. But tonight, I got out of my home, out of my body, out of my mind, and I extinguished the fire in my body by putting myself into a situation that works.
Human interaction distraction, even if it lasts only for a few hours, is comprised of many moments. And when you have TM or any chronic disease, your life is moment to moment. To have the opportunity to sew so many of those moments into one seamless evening is priceless.
And when I got home, I ate a few peanut M&Ms, took my night meds, fell into my bed, cuddled with my cats, and fell asleep, proud of myself and looking forward to the next opportunity to barter a day of amplified pain for a few hours of feeling like the Melanie I used to know.
*"Weakness or other dysfunction may lead to changes in self-esteem and self-image that affect sexual performance. Both an individual with neurologic dysfunction and/or the partner may perceive that disability makes the person with TM less attractive or less masculine or feminine."
From: Issues of Sexuality Surrounding TM by Joanne Lynn, MD and Leslie Moore, RN
In my family, when the goin’ gets tough, the tough eat Peanut M&M®s. Look in our freezers, and you’ll find at least one, but more likely 2-3 super-sized bags of M&Ms, as well as Vodka. In fact, my freezer is composed of:
- 1 nearly empty bag of Dark Chocolate Peanut M&Ms
- 1 nearly empty 1.5 liter bottle of Pinnacle Vodka - Classic
- 1 half-empty bottle of Smirnoff® Triple Distilled Raspberry Vodka
- 1 half-empty bottle of Smirnoff Triple Distilled Passion Vodka (this makes the best and cheapest Screwdriver on this planet; I recommend 4:3 Vodka/OJ)
- 1 3/4-full bottle of Absolut® Citron (Fun Fact: Absolut has its own fashion line)
- 5 multi-colored, multi-shaped mini trays of ice cubes in the shapes of hearts, stars, triangles, wine bottles, and plus signs (While adorable (the hearts are my favorite), I wouldn't recommend these for people with neuro or rheumatologic disorders.)
- 1 unopened 4-pack of Gardenburgers®
- 1 expired package of lox
- 1 freezer travel bag of single-portion packaged meatloaf that my mother made my brother bring with him on his last visit
I wouldn’t be surprised if we’ve kept Mars Inc. and myriad vodka companies in the black through these harsh economic times.
While peanut M&Ms and a Screwdriver work wonders on emotional stress, these treats aren't quite potent enough to put out the relentless fire in my body. Nor are the 30+ pills I take every day, or the vampiric tri-weekly plasmapharesis treatments, both of which have been prescribed to do precisely that, among other wizardly healing.
FIRE STARTER
The fire in my legs—and arms, and neck, and torso, and face—is hot pill-sized bubbles of exploding cherry bombs and muskets that burst like popcorn on the stove, a nuked porcupine, and Mozart's Die Entführung aus dem Serail from my bones to my skin. It’s relentless as Greenpeace volunteers on 15th Street, ubiquitous as Law & Order and its multiple incarnations on cable, and distracting as a new relationship (but that delivers an entirely inverse tingle).
Incontinence can’t extinguish it. A hot bath is a no no. Gabapentin may diminish it, but the alarms are still blaring. Tramadol swilled with a glass of wine can occasionally do the trick, but it takes a lot of follow-through, and too much alcohol is bad (but oh so good) for a vertically-challenged disabled girl on steroids and a narcotics rainbow.
Unless we’re doctors, anything that transpires inside our bodies, is usually impalpable. As a dancer, I spent my career coercing a deep mind-body connection. And as much as I experienced that, it doesn’t make a damn difference now.
Half of my body is numb. My mind doesn’t know my anatomy exists, cold or heat don’t care if it touches my skin, my dangling earrings mourn they perceived loss of their mate, and the air that once danced against body is just distance between me and where I need to get to next.
And despite all this lack of feeling, I feel the fire. And I feel frustrated and exhausted and limited. I’m supposed to be getting better. I’m supposed to be the queen of the dance floor. I’m supposed to be happy, charming, intelligent, sexy, flirtatious, and a joy to be around. But I’m on fire and there’s nothing sensual or flashy about it.
BLAZING THROUGH
So how does one deal with the pain and exhaustion of Transverse Myelitis (TM), and its blood-plasma-life-force-sucking treatments and mind-altering drug menu?
Obviously, the way I phrased this question, although grammatically correct, is pretty damn stupid. Everyone deals with pain, suffering, discontent, and disappointment differently.
I’m trying to maximize the healing components of my new mantra, My Life Sucks, but I Rock, a somewhat contemporary meditational approach to pain and suffering. Although it’s a great ego aid, which is a sanity necessary for most with a chronic or debilitating disease, especially one that is outwardly visible, its vessel for healing isn’t bountiful enough to hold all the fire extinguishers in Pennsylvania. And it certainly can’t hold a muscular, grease-covered fireman with the strength to sweep me off my feet, vacuum my apartment, assemble my new furniture, or screw me mindless until I'm blissfully numb.
While there isn’t any sexual healing happening in my apartment, I have found distraction to be the best therapy for pain management and its emotional side effects, and it comes in many human and non-human, and active and passive forms.
There are many distractions I have found that work, and I’ll address all of them eventually. But in this post, I’m talking about Friday Night Distractional Healing after a 5AM-8PM work-treat-organize-get-on-with-it day comprised of plasmapharesis, somewhat deserved angry text messages and emails, fighting Aetna, work, work, work, my first and humbling Life Alert installment, wearing the ugly and way too big bracelet that goes with it, a 5:30 therapy appointment, and assembling the very cool and on sale tree candle holder, only to find that the glass votives were broken.
FRIDAY NIGHT FIREMAN TO THE RESCUE – PART I: PARTY TIME?
Fantasies aside, my Friday night fireman, came in the guise of an invitation from two friends (that means fireMEN!) to a holiday work party at one of the top landscape architecture firms in the country.
SCENE:
As they skulk along with the hoards of traffic along the Schuylkill express way, firemen, Mat and Jesse, run out of work talk and decide to call the sick, disabled, moody, frequently tired, yet occasionally charming and glamorous Melanie. Not knowing what to expect from their drive or their philanthropic phone call, they take turns staring out into traffic and back and forth at each other, while stealing potluck cookies from the Tupperware in the back seat.
ACTION:
Firemen dial, while swallowing the last bite of a chocolate cookie:
“We’re going to a party, not sure what to expect. We’re stuck in traffic, but we could pick you up in 30.”
ACTION:
Dull, tired, unshowered, undressed Melanie responded:
“Sounds like fun, but I had treatment today, and I should really take it easy, plus my cognitive abilities are on the demise, I don’t think I’ll be much fun to be around.”
ACTION:
And the firemen said:
“It might be boring, anyway.”
ACTION:
Then recently-former-good-time Melanie said, waffling on her lame evening forecast, but still certain it was the best choice and she wouldn’t follow through on her suggestion:
“Why don’t you go, call me when you get there, and if it’s not boring, I’ll grab a cab and meet you.”
ACTION:
As she imagined her single-woman evening itinerary of fire-bound legs attached to her couch and tremoring fingers stuck to her remote, she recalled the discussion she had just one hour ago with her therapist about her lack of single friends and touch and human interaction, and how having more of these things in her life might make living with TM a little easier, she saw a golden flash of young, hot architects dressed in tight black jeans, with equally tight asses and pretty faces prancing before her, and she said with understated appreciation:
“Alright, I’ll come, I can always grab a cab home. How long do I have to make myself beautiful?”
~not quite fin~
Going to a party is like getting married. You gotta look your best and there’s always a way out. And fortunately, the way out generally isn’t as painful or arduous as divorce.
Luckily, I have discovered and purchased Cinderella beauty products and a wardrobe just for these occasions. They couldn’t have saved my marriage, but they do make it possible for a disabled, disfigured, chronically sick and tired woman, such as myself, to look and smell good as the occasion required.
THE 10 DISTRACTIONS
We arrived at the party, and although I was still on fire in a bad way, I felt hot in a good way. I was wearing my latest purchase from Joan Shepp (a luscious dress that had material gentle enough and strategically placed enough to almost cover both of my extruding catheters). In preparation, I had loaded on the Nars Laguna/Orgasm bronzer duo so I had a deceivingly healthy glow, and weighted my wrist with enough bracelets to cover the hospital bands.
To our surprise, the party was bangin’—rife with hip and happening people of all ages, numerous and beautifully laid out food stations, music that could even make a frozen shoulder dance, and free booze.
TM or no TM, I know how important human interaction is to my quality of life. But large crowds make me uncomfortable. There’s the overstimulation (people with TM have hyper-reflexes and responses), the fear of getting knocked over, and public incontinence, just to name a few.
Distraction 1:
Open Bar
This was a large crowd, but one gabapentin and two glasses of savingon blanc later, and I was prepped to navigate its labyrinthine layout and all the beautiful and friendly-faced people.
Distraction 2:
Get cerebral
I often wonder what people are thinking when they smile at me and my various props. I’ll get into more detail about this topic in a future post. But for tonight, it gave me the opportunity to escape the dizzying lights and get into my head.
Distraction 3:
Beauty
Hot guy walks by, and then another, and then another…but I’ve set my sights on one. (Note: this may be counter-sexism, but eye candy is still candy, and I believe I deserve a little extra candy for now.)
Distraction 4:
Small Talk
Alice, a very effective small-talker, introduces herself as a wife of someone who works at the firm. I introduce myself as an ex-girlfriend of someone who used to work at the firm. I silently pat myself on my back for my wit. We laugh and move on.
Distraction 5:
Genuine Conversation
Tell Mat about hot guy #1. He says, really? I say, yes. He says, what are you going to do about it? I say, posed as a statement, not a question, why don’t you introduce yourself to him and then, of course, him to me. He says with resolute reluctance, we’ll see.
We look at the spread of food before us, and despite my lack of appetite, I eat something unidentifiable in the dim lights and appreciate the texture in my mouth. I prop myself on someone’s workstation to rest my legs and wonder why no one is dancing.
Distraction 6:
Meet & Greet
Meet Alyssa and Frank—the most adorable and friendly married couple in Eastern Pennsylvania.
Alyssa too wonders, although out loud, why is no one dancing? I want to dance. She sees my cane for the first time and apologizes for what she considers to be a blunder. There’s such a thing as cane-dancing, I say responding to the fear on her face, but the music has gone downhill, a couple generations and not the musically prolific ones, so we agree to wait for the next good song.
Distraction 7:
Hot guy #1 in Close Proximity
Alyssa says he is the sweetest guy in the world with the cutest accent ever. I ask, would he be interested in a woman with a badass cane? Superficial, I know. But presentation is where these things begin.* She looks me up and down with total sincerity and compassion. Yes, she says.
Courage restored.
Alyssa introduces us. We all chat. I try to hide my cane behind me. Good music returns. Alyssa, Frank, and I take off to fill the void of an empty dance floor bitterly juxtaosed against flawless hip-gyrating music. Hot guy #1 says, I’ll join you later.
Distraction 8:
Bonding
Alyssa and I have bonded en route to the makeshift dance floor. We agree to stay in touch. We agree that we need more friends with joy and spirit. Basically, we agree.
Distraction 9:
Dancing
I know I shouldn’t. I know I will spend Saturday in bed and in pain. I know I can't tear up the dance floor like the old Melanie could. But, I’m feeling the music and forgetting the fire, and it feels so good to move my body.
I don’t feel the air against my skin, yet sound waves still reach my joints and my pelvis is making its mark, even if my feet aren’t’ burning a whole in the dance floor.
Distraction 9:
The Stare
I feel the music, but I also feel the people watching me, thinking, oh look at that disabled woman dancing. How sweet?
But then I realize, I still have more tenacity than the fully-abled dancers. So maybe they’re thinking, what the f*ck is wrong with me? Why aren’t I taking more risks. Why aren’t I checking my baggage at the door? Why aren’t I going for it?
Who knows. Who cares. At this point, I’m back into my private dance world, and more and more people are joining in.
Distraction 10:
Diseased Body Realizes its Limits
I got so lost in feeling human—in the interaction of dancing with new friends and strangers, the possibility of hot guy #1 finding my still-decent-yet-unknown-to-the unknown-eye-limited moves enticing, of the fan blowing the layers of my dress into its own dance—that I danced too long and too hard and too damn good.
And now I cannot hold myself up. Now I need help. I hate needing help.
FRIDAY NIGHT FIREMAN TO THE RESCUE – PART II: WITCHING HOUR
This is where the Cinderella story ends. And it’s actually midnight too.
I grabbed onto my fireman, asked him to hold me up and keep me from stumbling, get me through the crowd and the 300 yards to the exit to save my dignity and my ass or head from another bad fall.
As he walked me outside to get a cab home, I remembered what I had said to him last week: I'm not going dancing again until I get better. The pain isn't worth the joy.
I reneged on my promise to myself, and I’m glad I did.
The next day, the results will be a return to fire and other pains and unpleasant distractions. But tonight, I got out of my home, out of my body, out of my mind, and I extinguished the fire in my body by putting myself into a situation that works.
Human interaction distraction, even if it lasts only for a few hours, is comprised of many moments. And when you have TM or any chronic disease, your life is moment to moment. To have the opportunity to sew so many of those moments into one seamless evening is priceless.
And when I got home, I ate a few peanut M&Ms, took my night meds, fell into my bed, cuddled with my cats, and fell asleep, proud of myself and looking forward to the next opportunity to barter a day of amplified pain for a few hours of feeling like the Melanie I used to know.
~fin...for now~
*"Weakness or other dysfunction may lead to changes in self-esteem and self-image that affect sexual performance. Both an individual with neurologic dysfunction and/or the partner may perceive that disability makes the person with TM less attractive or less masculine or feminine."
From: Issues of Sexuality Surrounding TM by Joanne Lynn, MD and Leslie Moore, RN
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