[This was originally published as a blog post, but I have added it to the main menu for easy reference. If anything new happens in my medical world, I will update it here.]
I have tried to write this post at least four dozen times. I have pecked away at it on underground trains zipping through Berlin, as I sat in a quiet bar overlooking the Valley of the Nobles in Egypt, waiting in line for focaccia in Turin, while zooming over the Atlantic, while staring at the Pacific, while the English countryside whipped by my window. It’s never felt right. It’s always been difficult for me to write about a disease that has become my new normal. But I feel compelled to do it for all the people out there who don’t know what is happening to their bodies, who don’t have a clue what to do, who think like I thought that they might have something they didn’t want to admit. So I write this out for you. And specifically for you. This long, rambling post will be of exceptional interest only to the minority of the population with autoimmune disorders such as Multiple Sclerosis. The rest of you who don’t have a chronic malady, please feel blessed, and maybe this will help you to understand those of us that do a little better.
(A side note on that, many and most people that I’ve met with a disease like this do not want sympathy or empathy. With all the kindness in the world, you can never really empathize, so please don’t try to. It’s irksome in the extreme. And please don’t tell me that God will take care of it. And please don’t put me in your prayers just because I have a disease. I appreciate the sentiment, but the pathos is exceptionally trying for me to process.)
I’m going to post this in a timeline format, so that once the ball starts rolling, you’ll be able to see how remarkable 2016 in the worst of ways and the best of ways. I’m a better person than I was in March when this crap all began.
Oh, and here’s the song that inspired the title of the post. It feels fitting.
If anybody were to ask, though nobody ever has, what my best feature is, I would proudly say, “My legs, darling!” Then, I’d stretch them out as far as I could in my skinny jeans without compromising my masculinity and await their inevitable approval. None would come because they’d be too gobsmacked by my beauty to speak. This would make complete sense to me, and I would nod knowingly before sauntering off.
I’ve always been quite fond of my legs, reader, so I was perplexed one morning in late March when my right thigh was peculiarly numb. I assumed I had slept strangely and that it had fallen asleep. Or maybe I had pinched a nerve doing squats. Squats are one of the only exercises that I will willingly and repeatedly do, so I was irked that my dream of finally having an ass had ailed me. I thought next to nothing of it and assured myself that it would soon go away. It didn’t. It most certainly did not.
APRIL 11, 2016:
I still believed that the strange numbness would diminish and fade away. It only got worse, though. It began to stretch from my thigh, past my knee, and slowly began spreading to my foot. But, I am not a person who ever gets ill, so I was sure I was going to be perfectly all right. For twenty-seven years, I have sailed through life with a reasonably healthy vegetarian diet and a firm belief that positive thinking would keep me young, spry, and beautiful for all eternity. This was a fantasy, of course, but I must admit that it did work for nearly three decades. So, perhaps there’s some credence to my belief? Positive thinking can go miles, reader.
For reasons I don’t know, I decided just to live with this numbness. I decided to accept it because there was no way I was going to go to the doctor. I have no opposition to them. I’m a huge supporter of universal healthcare and doing good for your body. I have a certificate in my files somewhere signed by President Obama thanking me for my efforts to pass the Affordable Care Act. I routinely research healthcare systems in foreign countries, and I’m particularly enamored by that in Japan. But I never go to the doctor. I don’t know why, but that’s who I’ve always been. My sister goes to the doctor all the damn time. And though I knew that I was unwell, I was reluctant to make an appointment. Something in my mind was talking to me, though, telling me that I really needed to seek out a physician, that there was something quite seriously the matter with me. And my brain told me what was wrong. And it was right, but I was still refusing to listen. On the 11th, I started to talk about this weirdness and telling my family that I probably had Multiple Sclerosis, but nobody took it seriously. It was more likely a pinched nerve than anything problematic, after all.
Perhaps I should take a little detour here to mention that things like this have happened to me all throughout my life. I just know things. I don’t know why and I don’t know where they come from. It’s never anything huge, but I oftentimes know what song will come next when my music shuffles, which way to turn without looking at a map, a person’s name, minor information about random events that are of no interest to me, and other things like that. I used to chuckle and call myself a “five-second psychic.” There’s nothing more worthless than that. It’s not enough time to do anything about anything. I say all this to say…I really don’t know why I ignored myself. My brain told me in April that I had Multiple Sclerosis. You can believe that if you want, or not if you don’t, it doesn’t matter much to me. But I knew. And I refused to act on it.
APRIL 20, 2016:
My delusions of recovery ended this day. When I got to work that morning, I noticed that there was something wonky about the vision in my left eye. Everything was blurry and it seemed that everything was glowing around the borders of my vision. This was particularly worrying to me. I have always been intensely sensitive about my vision and notice even the most minor imperfections. This is one of the reasons I cannot wait to get some kind of eye surgery…which may no longer be possible…but I’m not going off down that road because I might drown the world with my tears.
Anyway, I decided I was having a migraine, so I took some pills, and then I took some more, but my vision didn’t get better. Every day it got a bit worse, and soon I was not able to see a thing clearly out of my left eye. One night when I was driving home, I sat at a stop sign for minutes waiting to turn because I thought I saw headlights. It was just a street light in the distance that I couldn’t discern. I should not have been on the road. The disparity between my eyes caused me to have major headaches, and I was not in a good place. I had less and less feeling in my leg, too, and I knew beyond a shadow of a doubt that I had Multiple Sclerosis…but I couldn’t admit to that. It had to be a pinched nerve.
APRIL 21, 2016:
Next day, desperate to be better, I drove myself to the local chiropractor, who is a lovely guy. He took X-rays of my spine, we gaped in unison at how messed up my spine is, and then he started cracking my bones.
It was so good to be doing something that I was almost sure I was getting better — I wasn’t. On one of our bi-weekly appointments, I said, “I have been researching my issues and whatever and it seems that I might have multiple sclerosis.”
He chuckled in a kindly way, “That’s a trendy one, you know? Everybody thinks they’ve got MS.”
I chuckled, too, he had allayed some of my fears. Still, I was not getting any better. My spine felt fabulous, but I was nearly blind in one eye. I had begun to limp ever so slightly. I was appalled with myself. I’m not a cripple. I’m 27.
APRIL 26, 2016:
Finally, I couldn’t take another day of this, so I made an appointment at the eye doctor, took the day off work, and drove into town. I’ve known my eye doctor since I was like ten, so we chatted about life and whatnot. When I told him my symptoms, he checked my glasses for scratches. I frowned at this. I wasn’t an idiot. Then he asked if my eyes were dry from a fan in my bedroom. I downright glowered.
“I think I might have Multiple Sclerosis,” I said, “or a pinched nerve.”
He chuckled gently, “Everybody thinks they’ve got Multiple Sclerosis. You definitely don’t.”
“Well that’s a relief.”
He nodded, frowning at me, “Don’t understand how the leg and eye could be connected, though.” We discussed neurology for a little bit, which I enjoyed tremendously. A year before, I had taken an online course from the University of Chicago that was an introduction to neurobiology. I fell madly in love with the subject at once and found it fabulously interesting. I still read up on it, so I was aware of the way nerves cross and weave and how they work. A pinched nerve made no possible sense, but still…but still…I was hoping that my dumb brain had been being overdramatic.
He couldn’t figure out anything obviously wrong with me, so we began a series of tests. My prescription was radically different in my left eye, but even with a corrective lens, I couldn’t make out the charts. I did ever so slightly better, but it was still just a blur. I felt sick.
He asked me questions and my answers didn’t make sense to him. Until then, I hadn’t realized that my perception of color was different in each eye. Everything had a sepia tint in my wonky eye. This frustrated him, I could tell, so we decided to do another test in a different room. This involved a gigantic machine that I looked into and had to pull a trigger whenever I saw a light flash. This seemed simple and straightforward enough. It was, though, I admit, disconcerting when two doctors and several nurses were in there watching, making hushed comments behind me in the darkened room. The results printed out, and we went back to the exam room.
I can’t forget the next fifteen minutes. I still feel sick. He sat across the room, staring intently at two gigantic computer monitors that showed the readout of the test. Each screen had a huge circle representing my eye covered with small dots in green or red. The right one looked decent. Only a few red spots in the lower corner that showed where I had failed to press the button. The left side, though, made me feel like I was going to vomit. There were red dots everywhere, everywhere, everywhere building up this huge mass in the lower corner.
The doctor turned to me, looking gently at me now, almost pityingly. “Your eyes are fine.”
“Physically. They’re healthy and working find and there isn’t anything abnormal in them…”
“The problem seems to be further back, not in your eye, but back in your brain. I wouldn’t say what, though. I’m not a neurologist, of course.”
What he was getting at lingered in the room. I was gobsmacked. “I have a brain tumor?”
He shrugged somewhat. “I guess it’s possible.”
I don’t remember a lot of what happened then. He talked about getting me to a specialist as soon as possible, how he wished he could have offered better news, how sorry he was. I was in a daze. I gave him the name of the doctor I used to see decades ago in my youth, and he promised that he would try to get me some kind of appointment as soon as possible.
I left the office, not thinking, just feeling utter horror. I had a brain tumor. I had a mass in my brain. I might…I might…die. Reader, I’ve always felt immortal. This was a shock to every system.
I don’t remember how long I sat in my car, sweating as the sun beat down on the windshield. I wasn’t able to start the car, I wasn’t able to focus. I wasn’t really sure what I was doing. Eventually I found myself in a pizza restaurant, sipping on white wine that had gone warm trying not to collapse in a weeping puddle. I managed this. I barely managed, though.
The eye doctor called back to tell me I had an appointment the next day with a general practitioner so that she could get me an MRI referral. I don’t know what I said. Back in the car, I began to telephone my family…and it’s a very unpleasant thing when you mention that you might have a brain tumor. The rest of that day is a blur. Most of the next one, too. I took the day off again, feeling guilty about missing work, but desperate to know what might ail me.
APRIL 27, 2016:
The doctor gave me a routine checkup, made me look at her fingers and count things. When I mentioned that I couldn’t understand how my leg and my eye could be connected, she mentioned rather off-handedly that Multiple Sclerosis could potentially cause that. I think I alarmed her when I turned to my mother triumphantly and shouted, “HA! I TOLD YOU!” I don’t think she believed me…maybe she didn’t want to believe me. That’s probably more the case.
APRIL 28, 2016:
The MRI was scheduled for the next day, and I missed another day of work, and my view of the world was darker in a way that is hard for me to properly describe. I’m a writer at heart, I do it every day in some form. I write novels and blogs and stories and lists and ideas and essays all the time with ease and pleasure. But I cannot think of a string of words that could ever accurately convey the terror I felt in that moment. I felt heavy, weak, angry, and listless. It was as if life had lost all meaning. And for me, on that day, it had. That was a true shock to my system, reader, because I really do love life. I love the world. I think being alive is fabulous and a treat and a treasure, but then to find it might be slipping uncontrollably away from me was enough to put me on the verge of madness.
I cared so little about anything that I wore sweatpants in public. I lay back on the bed and thought of nothing as I was wheeled into the MRI machine by a kindly Southern man. I was incapable of much else; I think my brain might have been paralyzed. I don’t know how long I was in there listening to the machine work; it clicks and vibrates and sounds as if you’re on a rocket to Mars listening to dark, tribal music. I didn’t move a muscle. I didn’t twitch. I didn’t do anything. I was nothing but a corpse at that point. I would talk and chat to people because I refuse to let them think I’m miserable, but then, laying in that machine, was likely the darkest moment of my life. Well, all aside from one that you’ll discover later.
Results weren’t instant, of course, and I had to wait and wait for what felt like years as the test went to my doctor and then wait for her to contact me. I was in mental agony pondering a potential mass growing angrily inside my skull. I felt like an alien. I was at work, but I wasn’t there. People were concerned and rightly so, and I must say that I feel so much closer and loyal to the school where I work. They have been an incredible support system for me on so many levels. There isn’t any way that I could ever properly thank them. I do hope they know, though, how much their care for me touched my heart. It meant the world to me.
APRIL 29, 2016:
I was stressed, so I treated myself to a therapy hamster I named Patsy. She hated me and the world.
Good old Pats was no good for me. I gave her to my sister.
APRIL 30, 2016:
And so one day a little later — days I really do not remember because I was so stressed — the results were finally in. I didn’t have a brain tumor. I did have lesions in my brain, but…
I DIDN’T HAVE A BRAIN TUMOR!
I shouted it from the hilltops, I excited proclaimed the news in the staff room. I got a lot of weird looks because not everybody knew that I thought I had a brain issue. Oh well, they got the whole story as I vomited it repeatedly to anybody that would listen to me. But then I stopped outside for a while, sitting on the steps sat the entrance to my work, and I thought seriously about the news. I was overwhelmed with relief, reader, but the consequences of the likely scenario soon came upon me. The comforting thing about a brain tumor is that it can be cut out. I would have really been annoyed having to shave my hair off and have my skull cracked open. But it would have been utterly fascinating for an opportunity to see my brain. I’d have somebody take a picture. But that was simply not to be. Instead, I had to deal with the reality of having some kind of ailment that was not cancer or a tumor. I had to seriously think about having Multiple Sclerosis just like I had predicted all those weeks ago.
I am very lucky to know somebody who has this ailment. She was and is a great comfort to me in my time of unease. Even though we didn’t speak regularly about the condition, knowing how well she appeared to be really encouraged me. I would be fine. I mean…I wouldn’t be fine…but I’d be okay.
I was still concerned, though. These appointments were happening day after day, which was remarkable and I credit excellent insurance — THANKS, OBAMA, SERIOUSLY THANK YOU SO MUCH FOR EVERYTHING, I LOVE YOU — and the will of providence. In retrospect my diagnosis happened with unheard of rapidity. So many people suffer for years before they are diagnosed. They go through doctor after doctor trying to convince them that something was wrong. But somehow, within a couple days I was in the office of one of Iowa’s finest neurologists.
MAY 2, 2016:
I was very anxious, but Dr. Hughes is lovely and he put me at ease. I appreciated how much respect he showed to me and my questions, and I feel like we had sincere conversations, not the usual doctor and patient chatter.
It is impossible to diagnose this disease in one day, like I said before, it takes some people years and years to even get their foot in the neurologist’s office. I was and remain incredibly lucky for the rapidity of treatments I received. Shortly after my initial meeting with Dr. Hughes, I was having what appeared to be liters of my blood siphoned off for testing. I know that this is hyperbole, but I was rather amazed at how much blood work was going to be done, and I was delighted to be losing weight in any fashion. Turns out, each of the vials they took from me amounted to bout a tablespoon, so I didn’t lose any weight whatsoever, so just tack that on to my lifelong tale of woe.
After this, they ushered me back to the office, gave me a robe, and then the single most unpleasant thing I have ever suffered in my nearly three decades on the planet occurred. A lengthy needle was shoved up my spine. You read that correctly, reader. I still get queasy at the memory or the words “lumbar puncture.” Dr. Hughes numbed a part of my back and proceeded to tell me all about what was about to go down. It didn’t sound so bad, really, and the nurses all assured me that he was one of the best. I’d hate to suffer this from one of the worst.
Laying on my back, in nothing but lovely pink briefs, a dressing gown, and a grimace, the needled was inserted between two vertebrae in my spine to get a sample of my spinal fluid. Although I have always been perfectly cognizant that the spinal cord is a rope of nerves, I didn’t think about what a bizarre feeling it would be to have these nerves touched by the brush of a needle. It didn’t really hurt in the traditional way pain goes, but it was the strangest and most unpleasant feeling. I never want to ever do something like that again. I felt weird areas of my body twitch and shift and I felt like I was sinking and nauseous. It was bizarre.
Soon, the needle was being removed, and that was even worse, but at least this nightmarish bit of the whole nightmare was over.
And then I got latkes with my best friend, so that was the silver lining.
MAY 5, 2016:
A couple days later, I heard back from the hospital with the results of the blood work and the spinal tap that they had done. The fluid in my spinal column appeared normal, but it turns out that I had next to no Vitamin B in my system. This is unusual. I’m a vegetarian, and B vitamins aren’t so easy to get without eating animal byproducts, but since I ingest a fair amount of cheese and eggs, it was suspiciously low. Like, there are some corpses out there with more Vitamin B in them than me. I was ecstatic to make this discovery. If I just had a vitamin deficiency, then I could pop a pill and everything would be right as rain. I did bunches of research into this and having low levels of Vitamin B can cause a number of similar symptoms to Multiple Sclerosis. Happy to have this nonsense sorted out, I was joyous to drive over to GNC for some pills and a return to health. Like all things in life, though, it wasn’t going to be that simple. No matter how many vitamins I took, my body was not going to go back to the way it was. I still had to have Solumedrol. Back in those early days of May, I was looking forward to the hospital pumping me full of steroids and then getting back to my life.
MAY 10, 2016:
I had two appointments today. The first was exceedingly annoying. At the hospital, I was ushered into a particularly hideous room with a black and white television and electrodes were glued to my scalp. I was then asked to stare at the screen with loads of flashing boxes, and this somehow told the doctors something about the health of my eyes. The right eye test was fine. But the left one was so trying. My eye would not focus because I could not focus. The doctor and nurse running the test didn’t seem to really understand that I wasn’t able to focus — which was literally the reason I was there — and I got rather short with them, but this was stressful, expensive, and degrading. I was glad to leave after an hour. The results later told the neurologists that there was no issue with my eye, it was inflammation of the optic nerve. I could have told them this before being tested, but I suppose it was necessary for some reason. Probably insurance. I don’t know. I hated that.
Then I was ushered off to another part of the hospital to begin steroid infusions to repair what had gone wrong. If you have never heard of Solumedrol, consider yourself blessed. I thought nothing of it until it was being pumped into my body in massive quantities…but I’m getting ahead of myself. For five mornings in a row, I needed to be at the hospital at some ungodly hour to be hooked up to an IV machine so that they could infuse my bloodstream with steroids. I made jokes about getting ripped and ready for the Olympics, but these aren’t the same kind of steroids. These ones are awful.
I was sat in a cozy chair, given a blanket and all the nibbles I could ask for, and then I was hooked to a drip for an hour. I didn’t notice much the first day, just a coppery taste in my mouth that wouldn’t go away. But if that’s all I had to deal with, well that was fine by me.
MAY 13, 2016:
On the third day of infusions, I began to notice that I was not feeling well. My body ballooned for whatever reason — it’s a common side effect of the steroids. My skin was stretched tight across my body, my tattoos looked as if they had melted, my face was round and red, I couldn’t sleep, and I had too much energy. The energy was fabulous, but feeling like a hideous monster was not at all cool. I stopped going to work because I felt too unwell to do more than sit.
MAY 14, 2016:
On the fourth day of the infusions, I was a mess. I have honestly never been more depressed in the entirety of my life.
I stayed at my mother’s house, just sitting there, thinking wild and unreasonable thoughts. I thought of the gloominess of my future, the shortened lifespan I might have, my inability to move, my future life of a cripple.
And as I sat in front of the fireplace, I sobbed myself silly because I would never be able to climb Mount Everest. Now, this is ridiculous, reader, because I have literally no desire to ever climb a mountain in Nepal. I’d climb a warm mountain, I suppose, but there is nothing at all appealing about hauling my ass up an icy peak that leads to death for many of the travelers. But my brain was so addled by the drugs flowing through me that I wasn’t able to think coherently, and I wept for hours about how all my dreams were dead. It was the lowest point thus far in my life and I started to ponder different ways to off myself. If I couldn’t climb Mount Everest than I might as well be dead. That made me cry a bit more, and once I cried all the steroids out of me, I was still feeling awful, but not quite as suicidal as I had been. I wonder if I would have ever been able to kill myself? I don’t think so, but that Ben sitting on the carpet, swollen beyond all recognition was not the same Ben typing this. Back then I was sure that I would be sitting in my own urine in some state facility being denied my rights and fed gruel. I was miserable.
MAY 14, 2016:
This was the last day of the infusions, and sweet god, I was ready to be done. I grimaced at the needle and at the kindly nurses and at the bag and at the laser they use to find my veins and at the television and at everything. I glared and I glared and I glared some more. It was awful. I felt awful. I had ballooned. I felt hideous. I had no motivation. Everything made me feel ill. I was in a sorry state.
MAY 16, 2016:
I was not recovering very well from the steroid treatments, so I was prescribed oral steroids to use to taper off the massive doses my body was accustomed to. I had absolutely no intention of taking these if they were going to make me feel anything remotely close to what the liquid version had, but I researched and I read and I decided that I might as well. I couldn’t get any worse, after all.
JUNE 3, 3016:
Today was quite a day. I had a long, thin needle shoved into my thigh and my calf and then heard a bunch of static when my muscles tensed and released. It was wild. I was being electrocuted or something, it was a nonsensical procedure since it was northing but a formality at this point. When the test was complete and the needles were yanked out of my flesh and I was sitting on the counter in my underwear — yellow this time, I think — and a hospital gown, Dr. Hughes finally said what we already knew and what I had known for months. I have Relapse-Remitting Multiple Sclerosis. That’s the good one, if any of them are any good
And that sat in the air. And I was relieved. I felt better than I have in weeks. It was so good to finally have a name for what had plagued me. It’s a bizarre comfort to know that it was something, no matter how awful it was, because I didn’t have to have any more tests, any more pitying looks than usual, no more dark questions, no more nonsense. It was finally just a thing. I enjoyed that knowledge tremendously.
Other people were more concerned than I was, but that’s because I’d had months of my life to figure it all out. I was already well adjusted when Dr. Hughes confirmed the diagnosis. I know that this is a hard thing for a great number of people. It is a monstrous shock to be ill, to be something less than who you thought you once were. But, if anything, I have an inexorable love for life. Even in the darkest moments and in the worst of times, I have never allowed myself to feel anything less than blessed to be alive. I live in such a wonderful world, and I have been lucky enough to know that. I wasn’t raised with a provincial point of view. I know that there is a great and wonderful amount of joy to be had. Life isn’t just Iowa. Life isn’t a disease. Life isn’t anything but what you make of it, and I have always intended to live extraordinarily. So, I wasn’t about to let an incurable neurological disorder get me down. It was just something to deal with.
I don’t know the day or the moment, but over the month of June, my symptoms began to diminish. They faded at the same pace they revealed themselves, and with each passing day, I found my vision slowly clearing, the nonsensical numbness of my leg diminishing. It was fabulous, I was becoming myself again.
JUNE 19, 2016:
With an official diagnosis, I could begin a lifelong course of medication. Dr. Hughes and I had discussed the various types of medication available for my kind of MS. Luckily, there are a great number of treatments available to avoid further worsening of lesions and other symptoms. Because I travel so frequently and my destinations can be peculiar, he recommended Gilenya, one of the daily oral pills available. You can also have daily injections or monthly infusions, but for my lifestyle, the pills make the most sense, and I was okay with popping a pill in the morning with a fistful of vitamins.
Gilenya is quite a remarkable medication (and REMARKABLY EXPENSIVE), so it requires insurance approval and six hours of observation. I had never taken a pill more dangerous than Vicodin in my life, so this was a lot to consider, but I would rather have a pill than have new symptoms. Luckily, and somewhat shockingly, my insurance approved Gilenya without any trouble. I have read horror stories about this, so I’m not sure why I was treated so well. I credit my beloved President Obama.
My in-home observation was scheduled and after the doctor had taken all the vitals she needed, I popped my first dose of Gilenya. My heart rate slowed as expected, but there were no worrying symptoms. So after six hours and many multiple vital checks, I was cleared to take the pill every day.
JUNE 29, 2016:
My first order of Gilenya arrived and I have to take one pill every day for the rest of my life unless I get a different treatment or a cure for multiple sclerosis becomes available such a thing seems likely but hardly soon.
And, I was approved for Gilenya’s co-pay support program. I pay nothing, reader, for this medication. This is insane. In my research, I discovered that uninsured, a year’s worth of Gilenya costs $54,000. That is not a typo. If I lived to be 80, that would be nearly $3,000,000. I would much rather have a vacation home in Egypt and an apartment in Paris. Thank all the gods in heaven for this kindness.
I went to Europe and Africa and Asia, and in the extreme heat and varying weather patterns, I felt quite like myself. My symptoms faded until I struggle to remember how they felt. It’s rather remarkable to think that just months ago, I was worried that I would never walk or that I would go blind. Such a thing didn’t happen. It might, of course, there are all sorts of things that might happen. But for now, I’m good.
And if things don’t go so well in the future, I have made up my mind to move to Luxor and live out my days in Egypt. My health did remarkably well there. In the dry, hot desert, I felt fabulous. It’s so cheap there, too, so I could retire there as an invalid quite contentedly. Let’s not ponder that. Let’s just hope it’s a vacation home I end up getting.
DECEMBER 19, 2016:
Today I had my first checkup with Dr. Hughes since I was diagnosed. I have been in the office before this, but not to see him. It was good to see him again and hear from him the results of my latest MRI. As of now, my brain is absolutely stable, which is ideal. The lesions in my brain have not grown. There are no new lesions up there. This is all fabulous, and I was overjoyed to hear that there was no more inflammation inside my skull. Of all the symptoms I experienced many months ago, this optic nerve inflammation was the most worrying to me. I didn’t want to be blind, and now I wasn’t going to be! I was just going to have shitty vision like I’ve always had. And reader, I have rarely been so happy to have bad vision but vision that was bad for reasons that aren’t Multiple Sclerosis. Maybe I’ll be able to get LASIK now that everything up there has stabilized? I hope so.
Dr. Hughes seemed quite genuinely pleased with my status, and I suppose it is nice to see somebody really respond well to medicine and his suggestions. This disease is one that you simply cannot predict. You can never plan for it, you can’t expect anything, you can only wait and remember that you have a demon lingering inside of you, lurking, waiting to feast on your nerves. How horrifying. But it’s all right.
I really can never thank Dr. Hughes or his staff enough. They changed my life whether they realized it or not. His quick actions were able to stop any disease progression before it became permanent and set me on the path to recover my lost abilities. In the future, things might happen, I might have another exacerbation or a fall or something that will hinder my good health. But for now, I have hope and a jolly good outlook on life, and I think that helps remarkably. If you have stumbled upon this page because you think you might have MS, or if you already do and are looking to read an account of another person, have hope. There is nothing if you don’t have hope. (Thanks, Obama.) And there are so many of us, I’ve discovered, that are doing tremendously well. You will be okay.
I’m even thinking of getting a tattoo to commemorate this dumb event in my life. I was super inspired by a mosaic discovered of a shrugging skeleton that held a bowl of wine and said, “Be cheerful and live your life.” That suits me. I think mine will look like this:
And so, I’ve gone through more highs and lows than I ever dreamed I would. I know that others suffer more than me. There is genocide and cancer and true evil out there (the next president…cough…cough…), and all I have is a nerve disorder. But it sucks. I am not going to say that my disease is worse anybody else’s suffering since everything in this world is relative. I mean, some of the happiest people I’ve ever met were the impoverished Egyptians who claimed me as one of their own this summer. But, still, I do suffer, and it’s only proper to express it so that I can get it off my mind. Multiple Sclerosis is like a demon that shadows my every move. Some days you don’t see it, don’t remember it, don’t think of it at all. But others, that demon will stab me in the heart. I can’t begin to understand it. I can’t even consider why I have the disease. Why make myself go crazy over the unknowable? All I do know is that this dumb disease has made me love my life more than I ever knew possible. I’m a better person because of Multiple Sclerosis. That’s silly to say, but it’s true. I have learned to love others, trust my intuition, and to enjoy life to the fullest. I live richly now. I am no longer the immortal man I thought I was. I still have faith that I will be cured and science will keep me young and handsome forever, so fret not. And I will exorcise this shitty demon as soon as science lets me. I don’t have time to be limited. I shan’t be.