This is my story of Transverse Myelitis.
Hint: The floor is lava!
If you’re a regular reader -crickets- you know that on August 11th of last year I was diagnosed with a very rare spinal/neurological disease called Transverse Myelitis. ‘TM‘ affects approximately 1 person in a million. Yes, I AM one in a million but that goes without saying.
If you’ve never heard of Transverse Myelitis it’s not surprising. It’s the kind of thing Gregory House would diagnose.
My primary care doctor had never heard of it. A neurologist in a small or medium-sized city may come across one case in their lifetime. It’s a wicked disease with a sudden onset and 80% of the time no forewarning. If a TM sufferer does have severe unexplained weakness in their legs it can be shrugged off with ‘Jesus I need to get more exercise’ or if they pee themselves before getting to the toilet on two or three occasions consider ‘Fuck I’m getting old fast.’
Don’t ask me how I know this.
I was on disability for a completely unrelated illness before the TM onset. Usual story; A mild-mannered writer, musician, Veteran Burner of 8 years and dangerously fast downhill skier. Okay, not so much the mild-mannered.
One day I was running errands with a friend and slowly became disoriented. I insisted on making a bank deposit. It was Sunday and no banks were open but why let reality get in the way of a swelling brain? My dear friend TK pulled up to a random building, gave a hobo $5.00, and pulled away from the curb back into traffic. Seems this cunning plan satisfied me. He then drove directly to the hospital. I opened the car door, and stepped out. On to my face. Seemed my legs were no longer listening to my brain.
Next thing I remember is being in the emergency room with a morphine, then Fentanyl, drip. The pain was worse than:
- a) 29 Hours of Labor and Childbirth
- b) Passing a Kidney Stone As Big As The Ritz
- c) Lumbar Fusion and Recovery
- d) Rupturing Gallbladder
- e) All of the Above. Combined
There was a barrage of questions which I answered cogently yet have no memory of. Followed by MRI’s, lumbar puncture, blood work and finally neurologists jacking me up with steroids. By the next morning I was paralyzed from the waist down. Screw that! During my two month hospitalization I went from all wheelchair to sometimes using a walker in the halls, stopped drinking coffee with my forehead, and ditched the catheter. Unexpected and inopportune releases of natural gas still occur and I have to schedule bathroom visits to make sure my bladder isn’t full, but it beats the hell out of a colostomy bag!
The first two weeks in the hospital were also spent with psychosis and hallucinations. This was a side-effect of the steroids. Didn’t make many friends during that time. At one point I briefly came out of it and was chained, with what looked like dog leashes, to a wheelchair. Remember yelling about contacting attorneys, the police and possibly the Better Business Bureau.
Found out later that my restraints were there for my safety. Not the nurses. Whoa.
TM has other dandy symptoms besides paralysis. Chronic pain. Forever. Nerve damage that causes, in my case; electrical shocks, twitches, balance problems, overwhelming fatigue, nerve pain manifesting as molten lava running from hip to foot, ripping into the tops of my feet with what feels like a dragon’s claws. There are a host of bizarre and ever-changing indications. Hell, my blood pressure permanently dropped 20 points. Went from severely hypertensive and on Lisinopril to having an attention-grabbing low B.P. Told you that the cigarettes would never kill me.
I walk on stilts and my feet are baked potatoes.
Right? How the hell do you describe this shit.
In the future I look forward to brain lesions, respiratory failure -told you that the smoking would never kill me- and a possible slide into MS. The latter scares me as there are a few people in my Facebook support group who have faced it. We TMers wake up every morning not knowing what symptoms will occur that day. It makes us braver, more careful of our health, and perhaps a bit more neurotic.
The Grateful and Positive Scale: I am NOT tied to a bag for the remainder of my life. The lesion is at C4 and my arms work pretty damn well. Bonus: I did not die within 48 hours of a misdiagnosis. Lots of people with TM are quads or remain permanently paralyzed from the waist down. Too many are not diagnosed quickly enough. The paralysis gets to the chest and they die of organ failure, gasping for breath, before anyone realizes what has happened.
I’m one of the lucky ones. Two neurologists were on staff that night and both had treated a Transverse Myelitis patient.
It’s called Transverse Myelitis as the lesion crosses the spinal cord. The lesion transverses the spine. Myelitis is an inflammation of the spinal cord. For an unknown reason your immune system decides to attack and destroy the mylan (the sheath surrounding the spinal cord), instead of sitting in a corner or working itself up over a flu shot.
I had to leave my home in Nevada (because I shot a man in Reno, just to see him die), gave away more than half of my possessions, and moved in with -gulp/shudder/eeeek!- my mom. Life is lived in a small bedroom at the back of her house. I only get out for numerous doctor appointments, and now Physical Therapy. P.T. is awesome by the way. Painful, but awesome. The first positive feedback on a miraculous recovery that I received, from anyone, in 6 months, was from one of my P.T. therapists. He said I was serious and making great progress. Whoop!
Unfortunately there is no one in this town that I know. Can’t drive a car so it feels like I’m a prisoner. My boyfriend of 3 years came to visit me during the 5th week of my hospitalization, my legs were still paralyzed. He said he’d met someone new.
Honestly, I wish I were dead most days.
Between pain and loneliness, being fairly certain that no man will ever want me again, and no longer having a home of my own, life can be a bummer. Okay it sucks.
It took six months for mom to admit that her eldest daughter would be mainly wheelchair-bound for the remainder of her life. My mom is awesome, but she’s the poster for ‘We’ll Simply Ignore it and it Will Go Away Syndrome’. Finally this week she took me to Cripples-R-Us, and we made the leap to reality.
Those bastards wanted $300.00 for the cheapest manual wheelchair model, on sale. Yeah right.
After getting back home I spent close to fourteen hours researching all kinds of chairs online. Actually found the one I test drove and ordered it yesterday. $166.00 fully assembled. I rock. Plus, there’s money left over to pay on the collection accounts with various physicians and hospitals, and two chocolate bars. 70% Dark with Sea Salt.
The chair should arrive on Tuesday. This has cheered me immensely today. I’ll do the daily at home P.T. regimen for the rest of my life, but there’s no way I will walk more than a few steps, with a serious gait weirdness. Can do about 5 minutes in the house, with the Cadillac (a cherry-red walker with brakes and a seat) before the pain skyrockets, feet go completely numb and legs give out. You better believe I’ve been working it though. ANYTHING to get better and get my life back.
Still, there are situations that most everyone with a spinal cord injury faces. Mainly, I don’t know what the fuck I’m doing. Haven’t saved enough to afford the 20% co-pay for the power wheelchair prescribed by the neurologist. The nerve problems in my hands and arms sometimes cause them to cease functioning correctly. A manual chair is just fine with me now though.
Hey baby, can you give me a little push? -provocative wink-
Where do I go for help? Is there any? If it were not for my mother I’d be homeless. How many people do not have this opportunity? What happens to them? Questions pound my head every waking hour.
Worried about transportation in this very rural area. Worried about finding a place to live. Worried about a motorized wheelchair. I’m too young for everything from low-income senior housing (jesus that sounds depressing eh?) to meals on wheels.
How do I get to the barrage of doctor appointments that TM brings? They’re all in Folsom and El Dorado, a half hour drive. The neurologist, Dr. Mengle, sorry Dengle, is in Sacramento. An hour away.
Force my head to consider the progress and good things. Never did purchase AFO braces for my feet and legs.It’s too late now. I can stand on a foam cushion for 20 seconds, and once, on the floor with my feet together, eyes open, for a full minute.
The Lyrica helps with the electrical shocks and best of all I hardly ever twitch now. Words no longer fail me, unless it’s in response to a surreal utterance by my daughter.
Continue working on getting the pain meds balanced and fine tuned. Right now I’m a walking DEA raid. It’s gonna stay that way. Considering a large stock purchase in Milk of Magnesia.
Found a cool psychologist (makes a stylish bookend to the psychiatrist) here in Hangtown. He’s helped convince me to start a screenplay (been thinking of this for a few years) and use this to begin a new direction of life. As with the Transverse Myelitis, I DON’T KNOW WHAT THE FUCK I’M DOING! Learning though. Outlining the story, reading scripts, trying to take the director outta my head and remember my only job is to write. For now.
Beats watching Wheel of Fortune and eating Pringles all day.
Get Up. Get Out. Get Better.
Brilliant isn’t it?
These are the words of Lynne Murray, the nifty guy who rolled up and introduced himself to Sandy and I a few weeks ago, as we sat sipping coffee and making a scene at the Cozmic Cafe. Lynn heads a group called the Placerville Mobility Support. There are meetings the 4th Monday of each month. I can hardly wait.