Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.
Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.



I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.



1.31.2009

Wrap it Up...Or Not

5 MONTHS & COUNTING
It's Jan. 31 - the last day of the first month of a "new" year. It also marks my approximate entrance into my 6th month of living with Transverse Myelitis (TM), one of many factors that has made this long month feel even longer. But when you have TM, especially in the beginning, human time is irrelevant. Moments last hours, days disappear or drag on for years, and months are the timekeepers of recovery potential.

The two major moments in time for TM'ers, aside from its startling, horrifying onset, are months 6 and 48.

According to current research, maximal recovery occurs within the first 2-12 weeks following the first symptom. By 6 months, there's not much more recovery to expect. And at 2 years, you have reached your maximum potential. That's it. You're done. You're stuck.

With rare diseases, such as TM, (every person with TM is literally 1 in a million), there's only so much data on which to base definitive answers, so the experts use non-committal words like usually or may, but for the most part, every agrees on this timeline:

Recovery from transverse myelitis usually begins within 2 to 12 weeks of the onset of symptoms and may continue for up to 2 years. However, if there is no improvement within the first 3 to 6 months, significant recovery is unlikely.
Recovery from TM is highly variable among individuals. Approximately one-third of people with TM experience good to complete recovery, another third experience fair recovery, and the remaining third have poor recovery. Most improvement occurs within the first three to six months, although some gradual improvement can continue for up to several years.
Recovery may be absent, partial or complete and generally begins within one to three months. Significant recovery is unlikely if no improvement occurs by three months. Most patients with TM show good to fair recovery. One-third of those diagnosed make a good recovery, one-third have only a fair recovery and one-third show no recovery after the initial onset period.
Prognosis for complete recovery is generally poor. Recovery from transverse myelitis usually begins between weeks 2 and 12 following onset and may continue for up to 2 years in some patients, many of whom are left with considerable disabilities. Some patients show no signs of recovery whatsoever.[2]However, if treated early, some patients experience complete or near complete recovery.
-Wikipedia

(
NOTE: This is the only contradictory recovery statement that I have found. Who knew the Brits were such optimists?)
In transverse myelitis full recovery often occurs even if severe leg weakness has developed. This is because the myelin sheaths around axons can be partially reformed and also because the inflammation stuns quite a lo
t of surrounding normal spinal cord. As a comparison, the amount of permanent damage to the spinal cord is vastly less than after a traumatic injury to the spinal cord due to a motor vehicle accident. Recovery can take many months; however, the vast majority of people do improve significantly.
-Brain & Spine Foundation


SWEATING IN JANUARY
So you can see why, in addition to the typical TM side effect of night sweats, my armpits are fountains, my hands are Slip 'n Slides, and my feet - let's just say I'm glad I bought extra socks when I could still afford it.

No matter how strong you are - mentally or physically - or how much recovery you've attained, these two judgment days are anticipated with fear, hope, or anxiety. If you're male, you might just stick with those three emotions. If you're female, you may experience 50 additional emotions per each one of your male counterparts.

Regardless of gender, deadlines are deadlines, and we can strive to meet or beat them, proving our competency, but unless you subscribe to quantum physics and believe you're living in an alternate universe (which I believe is a real possibility), our minds, bodies, emotions, and lives are still planted into this earth, which despite all the scientific revelations, still beholds many mysteries.


THE SEA CREATURE IN ALL OF US
For some of us this "world is our oyster", and even if you have TM and you are anywhere from newly diagnosed to 30+-years into it, this cliche could still crack its slippery face and suck you in. It does for me, daily, sometimes hourly.

As much as I'd love to suck down a sampler plate and let its natural libidinous after-effects take control of my future - that's a one-night-only ticket, and they're just too damn tiny to fit the seemingly never-ending, convoluted, all-consuming calendar - which in my case is filled with myriad tasks, doc appointments, procedures, to do lists, diary notes (one of the means I use to combat my short-term memory), and project-related files (I love and highly recommend Entourage for managing one's life - medical or otherwise).

I wish I could be definitive. I wish my doctor could be too, but the disappointing truth is my oysters are rotting. With each hospital stay, follow-up visit, my doc's goal for my recovery decreases and my prognosis remains undefinable. It 's a rotten outlook, but it could be worse.


BLAME
I could blame my TM status on Aetna's protracted denial of necessary treatment coverage, which I often do. I could blame it on my lifestyle (which, if you knew how boring I've become you'd know would only be a small contributor). I could blame it on stress, city-living, living in a city without family, falsified expectations and devastating let-downs, or capitalism.

I could blame it on a life of a series of traumas and loss, which as an ex-dancer and student of body-mind centering, I believe we suppress and carry these events in our body. I could blame it on Tom, Dick, and Harry. Hell, I could blame it on my devoted, would-sacrifice-anything-for-me, unconditional-loving mother. And boy, would that make me a miserable ass.

In one experiment, some participants were told that an individual was speeding home to hide an anniversary present from his parents, while other participants were told he was speeding home to hide cocaine from his parents. While speeding, he hit a slick surface and lost control of his car. When asked how much control the individual had over the accident, participants who believed he was driving home to hide drugs attributed a greater degree of control over the outcome to the individual, presumably due to their effort to validate the blame they attributed to a driver they perceived as morally deplorable. Alicke (2000) proposes that spontaneous evaluations of the sort described by Bargh and Chartrand (1999), likely lead individuals to engage in such “blame validation,”—altering the evidential standards for blame, changing judgments of causation and control, and engaging in biased searches for evidence in favor of their judgment.
-From: Ripple Effects in Memory: Judgments of Moral Blame Can Distort Memory for Events

OR BENEFIT...
I could capitalize on the healing prowess of hope and gratitude. I could focus on my improvements (although relatively few and minimal....miss negative emerges), rather than my losses (Mom's sage advice). I could make a "benefits list" of a future lifetime of disability and pain. But I won't, because I can't yet bring myself to fully accept my current disabilities let alone a future of them.

So, I should be thankful for disposable washcloths, without which "bad neuro day" = stinky Melanie, because due to point above, I still haven't installed support bars in my shower.

I could be proactive and sign up for a mindfulness/meditation/stress management class (which I did) that could not only affect my prognosis, but could change my life entirely. I could publicly thank my urologist, Dr. Melanie Amster, for recommending the class, listening with compassion, and waiving my future co-pays. And prior to that, it was her encouragement that resulted in a 6-day wait for an appointment with an I-won't-stop-until-you're-better neurologist who has a 4-year waiting list (long story).

There are actually a lot of positive happenings that have evolved from my illness, as well as fateful life choices that have led to a greater ability to manage my new life. And if I weren't stoned on my night meds, I'd list them all, such as reconnecting or becoming closer to family, or my short-term marriage that provided me with the health insurance I lived without for 8 years, or my procrastinated-yet-dedicated decision to quit smoking by hypnosis .

Or I could go back even further in time...


AIN'T NO YIN WITHOUT THE YANG
As I'm writing this post, I'm becoming more enlightened. And that fits neatly into the above section. The Dalai Lama would be proud.

Illness leads to conflict - internal and external, physical and psychological, medical and financial. And we can choose to remain in an eternal state of conflict, which probably results in non-result, or we or our bodies or our minds or our negotiators or our attorneys or our friends and family members, or the congruence of any of those can work towards resolving these conflicts. Without which, there is no healing. Although I'm no mathematician, I'm making some mental if/then equations in real time:

Equation Set 1 (3 variables)

Variable A
sickness = conflict (+ resolution attempt(s) = healing (+/- cure))
= enlightenment

OR

Variable B
sickness = conflict ((+ resolution attempt(s) = stagnancy) recovery)
= enlightenment

OR

Variable C
sickness = conflict (+ resolution attempt(s) = deterioration)
= enlightenment



Equation Set 2 (1 variable)


sickness = conflictt (- action)
≠ enlightenment



Assuming my logic dings the truth bell, then sickness plus action offers more opportunities for growth. While there are many paths to enlightenment, many of which are less painful or threatening than illness, all of them require action.


Time to Choose
If I had to choose the greatest benefit of illness, it would be the opportunity for this personal or spiritual growth. No matter what religious belief systems you abide by or reject, if you see the glass half empty or half full, or you're so miserable that you just don't give a damn, I still can't imagine a person in any of those categories not appreciating the opportunity (if it presents itself) to become a more enlightened human being. But, that's just the conjecture of a multimedia artist sicko (me) of moderate to minimal success who doesn't even have her own Wikipedia entry. So I'm turning to Internet research and offering quotes from heavier hitters throughout time to back me up:


“O Holy Spirit, descend plentifully into my heart. Enlighten the dark corners of this neglected dwelling and scatter there Thy cheerful beams.”

- Saint Augustine (354-430): Ancient Roman Christian Theologian and Bishop of Hippo from 396 to 430. One of the Latin Fathers of the Church.)


"I have always fought for ideas -

until I learned that it isn't ideas but grief, struggle, and flashes of vision which enlighten. -Margaret Anderson (1886 - 1973): flamboyantly bold American founder, editor, and publisher of The Little Review.


“Enlighten the people generally, and tyranny and oppressions of body and mind will vanish like evil spirits at the dawn of day.”

- Thomas Jefferson (1762-1826): 3rd US President (1801-09). Author of the Declaration of Independence.



“A dramatic experience concerned with the mundane may inform but it cannot release; and one concerned essentially with the aesthetic politics of its creators may divert or anger, but it cannot enlighten.”

-David Mamet (1947- ): Prolific American playwright, essayist, author, screen writer, and director.




Balancing Act
For those of us struggling in that ineffable space between positive and negative, I think the yin/yang balance theory is not only appropriate but integral.

Yin yang transform each other
Like an undertow in the ocean, every advance is complemented by a retreat, and every rise transforms into a fall. Thus, a seed will sprout from the earth and grow upwards towards the sky - an intrinsically yang movement. Then when it reaches its full height, it will begin to weaken, and eventually will fall back to the earth in decay - an intrinsically yin movement. Yin always contains the potential for yang, and yang for yin.
Yin-yang are balanced
Yin-yang is a dynamic equilibrium. Because they arise together they are always equal: if one disappears, the other must disappear as well, leaving emptiness. This is rarely immediately apparent, though, because yang elements are clear and obvious while yin elements are hidden and subtle.
-From Wikipedia


I had no idea when I started writing this post, that this is where I'd arrive - seeking, or rather finding, calmness, acceptance, a state of balance. Ironically, in my past-life's work as a dancer/choreographer/director, I was in constant pursuit of balance, that singular place where the body supports itself with absolute ease - unhindered, yet propped by the mind, bones, and breath.

When a dancer, artist or athlete finds that Zen-Spot, she has most likely conquered any associated fear and is free to move (or stand) beyond herself, beyond pre-existing limitations, beyond the confines of the body itself.

Even the most confident person - athlete or couch potato, single or partnered, sick or healthy - could find this state of balance frightening. One misstep, a single distraction, or an outside force could send us falling right back on our asses. So maybe to achieve balance, we need to overcome aversions to disappointment and pain, basically any fear of failure.

I have failed and fallen (literally and figuratively) over and over again because of lack of balance. This realization is like a life-threatening diagnosis - tossing me into temporary shock. I'm seeing the significance of balance, or lack thereof, within a lifetime of whopperjawed experiences cartwheeling across the avenue of my blurry eyes - my marriage, my first business venture, jobs, friendships. Wow. I need a moment to take all of this in.

Moment taken. Moving Forward. Time to close.
This post is my first online journey with you. I set out to give a simple update - to summarize the successes, disappointments, setbacks, improvements, and plans for months five and six of my TM recovery.

Instead, writing and rambling over the past seven hours, I think I've arrived at the most important discovery of my life, or at least the most integral discovery to my recovery process.

In moving from January to February, I have to let go of the medical deadlines and release my self-imposed fear of recovery failure. These kinds of thoughts are as disabling as my TM disabilities, and if I have any chance of recovery, I need to shift my focus from disease state to ease state, a life of balance.

I'm not sure yet what this means for sickness, or how to accomplish it. My body once understood balance intrinsically, but that body doesn't exist today, nor will it ever again. One doesn't have to be sick to endure that either; aging alone instigates these irreversable changes.

While, February may be my most challenging month yet, seven hours into writing this, I still haven't arrived at the details of that discussion, so I'll leave it at that. Perhaps the details are not what will or should matter to me.

Rather than face the challenges of TM, I'm thinking I should take on a different kind of challenge, a balance challenge, and allow those unavoidable, unpleasant, undesirable, un-, un-, un-s to do their own nasty things, while I do mine.

10 comments:

  1. Your time line for improvement brings back many memories. I found the first year optimistic. The second year was about the same, but progressively discouraging as I approached the 24 month anniversary. The third year was a bummer while I tried not to think of the number of days ahead that would be as hard as those behind. ("It's been such a hard three years, how can I handle this for another 25+ years?") Then, the fourth year which concluded last September. Better than the third, but more tiring since regular aging is also catching up (58). It's a hard step to move from self-pity and victimization to purpose and worth. I'll keep praying for you as you face each day.

    ReplyDelete
    Replies
    1. Hi Doug,

      I'm sorry for the delayed response. I have too many excuses! I really appreciate you taking the time to write and share and offer hope. I'm now in my fifth year, and thanks to experimental treatments and an inpatient stay and Magee Rehabilitation where they taught me to walk and talk again in July '12, I'm better than ever. I'm traveling for treatment and am part of a clinical trail for my CRPS, and it's making a huge difference in my daily quality of life, although I'm still in pain, and have extreme and debilitating fatigue, as in addition to the TM and MS fatigue, I've been diagnosed with Sjrogren's Syndrome, an autoimmune disease that causes extreme chronic fatigue. I take the highest dosage available of Provigil and pharmaceutical grade ginseng and I drink a homeopathic energy shake, and I can still crash with all of those in my system simultaneously. Sometimes I feel like I'm too young not to have the stamina to have an evening social life, but I muster what I can when I can, and I celebrate happy new moments.

      Best to you Doug, I hope this finds you well,
      Melanie

      Delete
  2. When I was diagnosed with TM two weeks ago, no one told me anything about it. They say it's self-limiting and I'd probably make a full recovery. And I started to. Two days after starting corticosteroids, I started to get my motor functions back to my feet. Then the sensory losses started to come around. After a week, I was walking on my own and my legs didn't feel so funny. But then, just as I was starting to really be hopeful, my daughter had a bad night and I was leaning over her crib for an hour comforting her. I felt something in my low back and got 6/10 pain shooting in my spine, followed shortly by a return of the burning feeling in my legs and numb feet. I thought I'd just tweaked somthing, so I rested the next day. But it hasn't gone away. In fact, it's ascended. I'm now seeking advice from those who are living with this...literature and neuro's state recovery 2-12 weeks, but is it patchy like this, where you seem to "revert" or get days where you're right back where you started, or is it that nice, gentle climb back to the top? What have been your experiences?

    ReplyDelete
    Replies
    1. I'm so sorry for such a late response. I hope you've found your answers, and they've come with good results. I'm almost 5 years into my intitial recovery and 3 years from my 2nd onset, but mine is complicated by a variety of neuro and autoimmune disorders. I often feel like the mythical Sysiphus, rolling the rock up the mountain only for it to fall down at the peak and having to start all over again.

      I've painted this experience. You've reminded me to update that part of my blog. I am so far behind on my comments because I had gone through such a difficult t

      ime until recently, including losing my vision... I believe there's a post or two on it. Please let us know how you're doing now. Are you still in pain? What kind of recovery did you have? How is your daughter?

      Best,
      Melanie

      Delete
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    ReplyDelete
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    ReplyDelete
    Replies
    1. Thank you so much. I'll check out your website when I have some more time. I'm currently preparing for a meeting with John's Hopkins University about TM, my art, and poetry, and a collaboration. Thanks again.

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    ReplyDelete
    Replies
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Thanks for sharing your comments on my blog. Please stop back soon or subscribe by clicking http://feeds.feedburner.com/NeuroDetour.

If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (http://www.facebook.com/inbox/?ref=mb#/group.php?gid=44446668472), a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.

Best,
Melanie

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