The Barrel of Monkeys

I’m an educated person. I thought that I had life and illness figured out. I read professional articles with multi-syllable words, written by people who are the smartest of the smart. In 1991 I completed my doctoral dissertation in a clinical psychology program in Colorado. My topic was the marital relationships of parents who have chronically ill (asthmatic) kids, compared to parents whose children are relatively healthy. I learned a lot – primarily that illness sends its tentacles into all aspects of an individual and their family’s life. Pain and disease affect the relationships between parents and children, husbands and wives, brothers and sisters, coworkers, friends, the list goes on. I had chosen to focus on emotional aspects of physical illness for my research because as a pre-adolescent my life had been affected by what turned out to be an orthopedic disorder I had been born with. My last vertebrae (L5) was misshapen – resulting in a weakness in that part of my spine. The problem was easily fixed with surgery, but illness and injury being what they are, especially for a 12 year old, left me with a lot of stress, depression, and a lifetime of episodes of resenting those ‘normal’ people who did not have back problems.

Oh, if I could have those innocent and carefree days back again. You might say, “Are you crazy, lady, you just said that the congenital deformity in your spine was pretty stressful. Well…. that wasn’t anything compared to the ‘barrel of monkeys’ that Transverse Myelitis turned out to be, forty years later. In the winter of 2011 I contracted Shingles. In case you don’t know what Shingles are, I hope that you and anybody you care about never get to meet that condition up close and personal. If you had chicken pox as a little kid, you contracted a version of the herpes virus. The virus lives forever in your body, and usually its no big deal. However, for one in four people, once they hit middle age or later, they get a re-run of the virus. Combine the flu with the worst ‘road rash’ you ever got from falling off of your bike, and that is Shingles. Rumor has it that only twice in thirty years did David Letterman take off ill for any length of time from his TV show – once because surgeons cracked his chest open to do a quadruple bypass, and another time when he had Shingles. Wearing clothes hurts when you have Shingles.

I was recuperating from the Shingles – starting to feel human again, and able to wear something other than yoga wear, when I noticed that I had been having weird back pain that I am not used to (and I am a relative expert on the many types of back pain), and a worsening of the sort of ‘restless legs’ that has been part of my old back injury. All of a sudden, March 15, 2012, when working from home, writing psychological evaluation reports, admiring each clever ‘turn of phrase’ I turned out, I realized that I could not feel my legs. I’m used to a couple of numb patches on my legs, but this was my entire right leg, and part of the left. Again, I chalked it up to simply fighting off the Shingles virus. It wasn’t.

About two months later, after a trip to an emergency room, four MRI’s, a colonoscopy, and a spinal tap, I had an answer. My neurologist, Paul Genilo, MD (he’s a genius, and pretty easy on the eyes) diagnosed Transverse Myelitis from #3 MRI. I had a lesion on my spine from T8 to T10. The day I got the diagnosis over the phone, I was in my office, doing some miscellaneous business maintenance since an appointment had no-showed. I took the extra time after I got off the phone with Dr. Genilo to look up Transverse Myelitis on the Internet, and email my chiropractor. She immediately emailed back, telling me to not look up TM online. Too late – what I had found out reduced me to tears. Wheelchairs, and ventilators, and going on disability because of a virus that took a chunk out of my spine? I’m vain and professional enough that I sucked it up, instead of worrying about how I was going to get tears and melted mascara out of my linen blend skirt. I had patients to see, a life to lead, and I could not let this thing beat me.

I spent the next several months learning to deal with wobbly legs, an appetite that had vanished, and assorted abrupt changes in how my body worked. Gradually I got stronger, and now I marvel that a year ago (I’m writing this in April 2012) I had to have help managing the stairs in my bi-level home, I couldn’t wear my beloved high heels, and I had to take a break from Jazzercise. Over time it gradually dawned on me that I had dodged a major bullet. Many other TMers I have spoken to in the on line groups are not able to walk, or work, or return to anything close to their TM lives. I used wheelchairs only when I was discharged following medical tests, and one of the ‘weak’ days when I couldn’t manage Wal-Mart or Sam’s Club store shopping. (Be kind to the people you meet in the store using those wretched store wheelchairs – the chairs are not easy to operate.) The only time I missed work was to have medical tests run (medical schedulers are evil people – if I tell them that I always take Friday afternoons off, or my husband is off work on Mondays and Tuesdays to drive me – they will schedule some invasive test on a Thursday morning.) And I resumed Jazzercise after a few months – with a few modifications such as no hopping with both legs together – too much jarring up my spine.

In March 2012, at my one-year check up with neurologist Dr. Genilo, he told me that he had not shared something with me last year, when I got diagnosed. Apparently, my TM lesion was so big and bad, that I should not have been walking. I shouldn’t have had the ability to walk. He wisely did not share that with me in 2011, when I was freshly ill. Oftentimes we live up to other people’s expectations. If someone had told me I should not be able to walk, maybe I would have (unconsciously) complied by not being able to walk. Since nobody told me how sick I was supposed to be, I just carried on with business as usual. Not knowing is sometimes a very good thing.

Last October I had the chance to deliver the message at my church (College Hill United Methodist Church in Wichita KS), when my pastor, Kent Little, was going to be gone that Sunday. I took it as an opportunity to tell them what they meant to me, and what my journey had taught me. Very few of them knew about my TM, mainly because I am an odd combination of shy, vain, and block-headed (stubborn). The biggest part of what I shared with my message to the congregation was a spiritual insight I probably would not have experienced, had I not been struck with TM. I, like most people around me, have this idea that ‘what goes around, comes around’ is the way of the world. That is, if I do right, eat my vegetables, give to charity, don’t cheat on tests, etc., I should be rewarded with success, good health forever, happiness, and never ever have pain until maybe the moment I die. That means that those who do not do right, spend recklessly, and park in handicapped spots when no one is looking will be punished with illness, despair, and loneliness. Yeah, right. Instead, none of us truly deserve the blessings we get from the universe, and often we do not deserve the tragedy that falls into our lives. Instead, to be mature and kind, we should live in an attitude of gratitude.

What this has to do with TM is this, from spending time supporting others online, and soaking up the support from other TMers online, I had learned that comparing my TM condition to others with TM (and others who are ‘normal’) was disrespectful, and violated what I take to be one of the great truths of this world. Again, virtue does not insure a disease-free, trouble-free life, and being an evil person does not mean that one will eventually get their comeuppance. I had developed ‘survivor guilt’ because I did not feel worthy to have been spared the worst of what TM can do to us. I had to deal with the fact that I had done nothing, absolutely nothing, to earn the blessing of having been lightly touched by this disease. Trouble befalls all of us, and blessings also are not what we earn, but what are granted to us, no strings attached. Maybe this sounds weird and incongruous (in a slightly politically incongruous way) but in preparing for the talk I gave, I came across a quote about being selfish, and being worthy that came to mean a lot to me, from founding father Samuel Adams,

“It is not infrequent to hear men declaim loudly upon liberty, who, if we may judge by the whole tenor of their actions, mean nothing else by it but their own liberty, — to oppress without control or the restraint of laws all who are poorer or weaker than themselves. It is not, I say, infrequent to see such instances, though at the same time I esteem it a justice due to my country to say that it is not without shining examples of the contrary kind; — examples of men of a distinguished attachment to this same liberty I have been describing; whom no hopes could draw, no terrors could drive, from steadily pursuing, in their sphere, the true interests of their country; whose fidelity has been tried in the nicest and most tender manner, and has been ever firm and unshaken.
The sum of all is, if we would most truly enjoy this gift of Heaven, let us become a virtuous people.”

Essay published in The Advertiser (1748), later reprinted in The Life and Public Service of Samuel Adams, Volume 1, by William Vincent Wells; Little, Brown, and Company; Boston, 1865.

What that means to me is this, once you’ve been given a blessing, or gift from the universe that you know you did nothing to earn, its up to you to then become the virtuous sort of person who could be considered ‘deserving’. Kindness, civility, fairness, and thoughtfulness – I’m still struggling to show all these characteristics, and often I fall short. I’ve learned some significant lessons from getting TM than I could not have gotten in 11 years of higher education. I would have liked to have learned all this from a book, but that wasn’t how it was meant to be. I had to live it, and I still am.

– Molly Allen, Wichita, Kansas