Every day, I think about this blog. I want to write. I want to write to you. I feel a responsibility.
I miss you.
I've placed expectations on myself to keep you informed, to write through my own experience regularly so that I can:
- remember my life
- experience catharsis through writing, or sharing
- connect to people like me
- keep my concerned friends and family informed of my progress (or lack thereof)
- be a voice for people like us
- educate people who are not like us
- change the world (through a blog...how naive, how vague, how self-aggrandized!)
I have been feeling sorry for myself, and it's really pissing me off, but I can't stop. It's like sugar - one indulgent three-layer chocolate cake after-dinner dessert becomes a gateway drug to night-time chocolate bars and afternoon oatmeal cookies. At least there's some fiber there. (If you have TM or on the drugs I take, you'll understand the reference. If you're not, I'll just spell it out: constipation.)
EXCUSES, EXCUSES, OR TODAY'S 15-MINUTE PITY-PARTY
The neuropathic pain* has been intense.
My breasts are numb.
I don't feel the pain of the access piercing my portacath.
I'm too embarrassed at my whining to go on.
How crazy is it to yearn for pain?!
(NOTE: No offense or correlation meant to S&M aficionados)
As my feeling body hides more of itself from me, I still feel the fire of neuropathy, the ache of a hand caressing my shoulder, the ghosts of The Drake pounding my spine. And I become complacent, lazy, angry.
I am out of work.
I am lucky; living on disability income.
I am society's definition of a burden.
Within the arrhythmic dullness and blur - dimming pigments, vision's deception, body's rebellion - I still have the Mel-spirit: story lines, entrepreneurial adventures, artistic visions, social & political concerns, compassion, conviction, and passion.
In my Transverse Myelitis (TM), autoimmune-inspired state, fatigue and confusion are winning. And I am becoming a little-skinny-water-logged-loser, limping behind myself - slower and more imbalanced than the real cane-sporting, glamour-seeking, stumbling and recovering me.
SLOW & UNSTEADY
It's difficult to accept a refined definition of "mover and shaker" - myoclonus in body and voice, tremors in hands and fingers, spastic bladder, IVIg delerium reactions, 110 lbs of a body teleported to Jupiter, ideas that prefer to play "hide and don't seek" rather than mindful actualization, an activist in hiding, a recycler dumped like generic waste into a generic garbage can.
Perhaps today's rain has melted the sweetness of my appetite to think and do and act - to smile at adversity and eat it for dinner.
Maybe the culprit is:
- the increased frequency of my home-bound IVIg infusions from 5 days monthly to 5 days biweekly
- the conflicting fear/hope/relief of starting azathioprine on Monday, a new and potentially nasty immuno-suppresive regimen to treat my recently confirmed autoimmune disease
- last week's bloody urine - a UTI that blossomed in silence because of my body's blindness to the burn
- vision with a moody mind of its own
Receiving IVIg at Home. Photo Credit: Mom
REBEL WITHOUT A CHOICE
I am a mutt: part rebel, part bourgeoisie. I want to control my rebellion - physical and mental. But no. I have to give the reigns to a body without a cause, pills, infusions, and doctors. I must concede. I could build an army, and I have, but the truth is, when you are sick, you are always alone.
Dear Optimism, Hope, Belief, Faith, and Perseverance,
Where are you, my dear friends, today? I miss your energy, your ovation-deserving performance. Obama is talking you up on CNN. Are you tired like me? Have I impoverished you, weakened you with tendinitis from over-use? Inflamed tendons are painful and slow-healing, but they recover with rest.
Forgive me. I'm feeling selfish - restless by the requisite, the force, the enforced tariff-will of rest-reduce-relax-retreat-repeat, an identity under constant revision; please work through your strain. I need you. My cats need you. My mother needs you. Everyone I know needs you. I promise to be more considerate of your needs and appreciative of your philanthropy. Admitting that I need is terribly humbling. But you know that as much, if not more, than my apartment's carpet.
We all need sleep (and a good vacuuming). We have broken pieces that find their whole with closed eyes.
Why do I feel guilty when I close my eyes?
Why do I feel guilty for being sick?
PS. Please tell Obama that the peoples' question of marijuana legalization is legitimate - although perhaps misguided in purpose. Forget about economics for a moment, and consider marijuana's medical benefits. I know I am, hand-in-hand with Canada, New Jersey...
*Neuropathic pain is a common and increasingly prevalent form of pain that is thought to involve an alteration in nervous system function or a reorganization of nervous system structure. It can be associated with nerve damage caused by trauma, diseases such as diabetes, shingles, irritable bowel syndrome, late-stage cancer or the toxic effects of chemotherapy. In many patients, damage to sensory nerves is accompanied by varying degrees of pain. The experience can range from mildly increased sensitivity to touch or temperature to excruciating pain. This kind of pain is extremely difficult to manage clinically because it fails to respond to most medications currently used to treat other forms of pain. According to Pharmaprojects, a healthcare publication, each year approximately 26 million people worldwide suffer from some form of neuropathic pain. (http://www.acadia-pharm.com/programs/neuropathic-pain.htm)