BLE...you may've heard it before, but hear it again.About 1 month past my 33rd birthday - when I had danced in my fave platform sandals that highlighted my modeled calves and thighs, partied among a collection of mismatched and matriculated friends, drank wine, ate with a full appetite both for food and life, drank more wine, and snuck hand-holding with man of the month (not my month, but his) - I found myself lodged in an unexpected world, a trip and tripping...2 Septembers ago, 4 weeks past a month of unfathomable, unnameable outer-body, outer-mind, outer-control-of-my-own physical and mental experiences - from street-spinning vertigo, buckling knees, emergency room visits, public incontinence, and finally partial paralysis and full-body pain and sensitivity making walking nearly impossible - I had the luck, yes I said luck, of receiving a swift and accurate, yet unexpected and unheard of diagnosis - Transverse Myelitis (TM).
Immediately hospitalized for more than a week on 1000mg of IV steroids and myriad tests, my doctor was hopeful, or at least he used his doctorly knowledge of the benefit of hope to tell me, I'd be back to normal in a couple of weeks - back to dancing, boyfriends - as many as I wanted, and my job - those things we call freedom.
In those two weeks, my condition worsened and with ongoing steroids stealing my sleep, I had the time and (still) the mental capacity to research this strange and rare condition. Within less than 2 weeks, I was back in the hospital; this time for two weeks receiving two treatments to cleanse my body of the angry antibodies that were attacking my nervous system and spinal chord.
LIBERACE WAS MY CO-PILOT
I had l
ived a life of luxury - not financial, but emotional, experimental, risk-taking, following my humble choreographer's vision to change the world, or at least, a few square miles of it with the communicative and evocative power that only the body in architected motion and meaning, and the mind dedicated and directed in devoted poetic outreach and activism.Why was my body, that for nearly a lifetime I had sculpted, strengthened, and serviced like a mustang and its overzealous owner, so angry at me?
BACK TO SICK BAY...sea sickness and docking
The second round of in-patient treatments - plasmapharesis followed by IVIg - helped, but didn't fulfill my doctor's promise. He changed his prognosis to a long, arduous 2-year recovery period, yielding an undefinable prognosis.
However, Dr. S promised he would do everything he could to bring me into the realm of the top 30 percentile of TM recoveries, returning me to my previously full-body control state - bladder and all - or at least as close to it as possible. The 2nd third promised minimal or no change, and the bottom third, a bedridden lifetime or ceaseless paralysis.
Since the first symptoms appeared about a week past my birthday, I figured by 34 or 35, my struggle would be over; the prognosis finalized, I'd pick up the pieces, work with what I had, and get back to a normal life - fleeced of uncomfortable and time-consuming treatments and a body in revolt.
AND BACK ON THE GORGE(S)
That actuality almost ended one day before my next birthday, when the second diagnosis of Multiple Sclerosis (MS) was confirmed and delivered. Although closely related to TM, 97% of people with TM, especially those that fall in the 1st 30 percentile continue throughout the "recovery period" to experience recovery, while MS, for most is forever degenerative.
Even though I didn't yet fit in that tantalizing 30% TM category with new symtpoms popping like movie corn, and old symptoms ebbing and flowing, my doctor and I still had hope, and he still promised things will get better - at least on the TM side.
But now there was not only TM and its accompanied autoimmune encephalitis that clouded my cognition and former intellectual musings and doings, but there was MS. One with an up-view, one with a down-view, and possibly both just waffling along on a fixed tightrope. So the MS treatment started and six months later my lesions held there ground, which is something I consider lucky. My MS was standing ground, not degenerating.
This all came following many return hospital stays - my body and mind not only in revolt, in states of varying dementia, but pain greater than being run over by a car - and I had the right to make that comparison. My cane, a walker, a wheelchair - I knew these mobility assistance devices well; I was naked, if not useless, without them - naked in every sense of the word.
OKEY DOKEY
I came to terms with the TM and its recovery period. I accepted the MS. I did my mourning in due order. I had let these disruptions become a part of me, as well as the deformations of mind and body - whether or not friends, lovers, or strangers concurred.
***
When I returned to the hospital, by then my second home, in February 2010 due to a public relapse that rendered me attached to a lovely but highly-priced couch in West Elm, waving off the sales people who thought I was there as a customer and not a patient with the inability to exhale, speak, or swallow, profound internal and external pain and weakness, and a well-timed stay for my necessary fistula operation (another physical deformity that I hadn't been fully briefed on, also used for dialysis), I was ready for the same old same old.
Not this time.
THEY SAY 3(and a 1/2 and then some) IS A CHARM
RSD. Another diagnosis. Another incurable and barely understood neurological disorder. A painful, ugly, unimaginable pulverization of my peace.
And not only RSD, osteoporosis and chronic anemia as well.
J., one of my regular nurses said, I thought you were going to get that [RSD] diagnosis. When I asked how she knew, she replied that my previous stays and their accompanied tear- and (not my quiet, stoic high-pain-tolerance-way) shriek-inducing bodily-induced-torture that tipped the scale to a hell I didn't believe in, had all the markers.
***
Most of you know all of this already.
Most of you may not know, now, when I asked that pervaisve question, what do you do?, I answer plainly and truthfully, I'm a full-time patient.
THE WAY WE WERE
I'm returning to the history of my neurological detour to make a point that found its voice in a delicate woman - my IV Ketmaine booster neighbor of the week. (I'll post the Ketamine cam vids later, at a more appropriate time)
When it was just TM; when it was just TM and encephalitis; when it was just TM, encephalitis, and MS, I still introduced myself as a freelance writer and an artist. Even though I was on long-term disability and SSDI, and that glorious work that once defined me, that gave me purpose, something, anything to look forward to was becoming more and more of a mirage, I knew I had a future - something to go to, someplace to arrive, some kind of existence in which I could be and do and contribute to this thing called society, a community that I still belonged to in some way.
But know it's more than a neuro detour, it's neuro soup, and the basic ingredients are identified (thus far), but the subtle spices that give it its flavor are a mystery. A mystery that is even more spicy than the life I can live now.
This neuro detour-soup is a life of what was, the way we were. In the infusion suite where we are a community, and in that other real world filled with fully-abled, employed and under-employed citizens, we introduce ourselves as what we were:
I was a dancer.
I was a mother.
I was a doctor.
I worked construction.
I was a student.
I was, I was, I was...
We talk in terms of what we were, not who we are. And rarely, if ever of what we could be.
We have so many stories of disappointment, loss, pain, mistrust.
Like my compatriot in the reclining chair next to me awaiting our treatment - our hope for some release from the consuming pain, swelling, burning, and sweating of RSD - her family doesn't trust her with her grandchildren - mine with my beloved nieces.
She tells me this. We both cry as silently as possible.
Even in the people's eyes who know us best, who you'd think know our capacity, we are not trusted. We are as unreliable as an addict, but the only addiction we might be guilty of is hoping for a cure, an end, someone, some people who will accept and love us for who and what we are, those special souls who will stay and stay true to who they are and who we are.
It is hard to have hope with these conditions.
It is hard to have hope when insurance companies deny coverage for the only treatments that may bring us some relief, hopefully even remission.
It is hard to have hope when friends, family and lovers give us all the love and support the globe can sustain and when the flare-ups takeover our ease, our freedom, they take their freedom and run - fearful that we'll swallow theirs too.
Yes, hope is imperative. Goals, careers and futures give lives meaning.
So tell me, where do we, the incurable neuro-ites, the stoic pain-stewards, the logically hopeless keep that precious medicine in our personal sphere of self-protection and healing?
In this neuro-life, it is the experience of many of us that the people we love and admire stop trusting us, stop feeling comfortable around us, stop wanting us - in our less than perfect state - in their lives as we are, or as we could be? (Sidebar: If I find the purpose and/or strength and/or utter openness, I will offer physical proof in a future post.)
How do we keep hoping? How do we continue to trust? Can you tell me this - honestly?
I want to know. Trust me.
