Once in a while I get a reminder that I have a chronic disease. See if you can spot it in the picture below, it’s the only way most people can notice. I try not to think about it often, as I have found over the last few decades that thinking about it makes it worse. It’s not funny in the traditional sense, but I’ve also found that a sense of humour makes me feel better. Maybe because it started (from a treatment perspective) with an hilarious exchange, maybe because laughter is the only drug that has worked, I’ve exercised my sense of dark humour.
About the time I turned thirty, I had a vision issue. It was as if I was wearing glasses, and there was a thumbprint on the left lens. After a few weeks I decided to see an ophthalmologist, having Wills Eye Hospital nearby I chose to “see” a doctor there.
I passed the eye exam. I really don’t trust eye exams because you already have a pretty good idea of what is there and can guess the right answers. I’ve learned how to fail those in the intervening years. The doctor told me everything was fine, so I once again described the problem. He shined his light in my eye and looked a bit and said, “I don’t see anything, you’re just getting older”. This was not what a perpetually young person who had just turned thirty wanted to hear, but it cleared up in another week or so and I thought nothing more of it.
Maybe six months later I started to get severe (unable to move due to pain) headaches when my blood pressure peaked (usually during “adult” activities). This time I went to my regular physician, who was much more thorough. We discovered some other “symptoms”, things I had just passed off as unimportant. Occasional weakness and balance issues. He ran a couple of batteries of blood work, ruling out Arthritis and Lyme disease and all sorts of things I had never considered. Then he sent me to a Neurologist. The Neurologist ran a number of tests, which were all in all entertaining. There was this one where I had electrodes placed all over my head and stared at a video screen with a checkerboard pattern on it. Then I had my first MRI, which introduced me to an area of imaging technology I hadn’t seen before.
After a couple of days I received a call from my Doctor. I had no idea what was wrong with me or what they were looking for at this point. He asked me to come into his office, and clear my calendar for the next day. I’m assuming brain tumor at this point. When I arrived in his office, he took me into his study rather than the examination room. He looked very serious. He closed the door and sat down at his desk. He looked in my eyes and said “Most importantly, you should continue to work as long as you feel able”. I replied, rather loudly, “What’s wrong with me?“. He said “Well, the neurologist can go over the details with you tomorrow, but your diagnosis is Multiple Sclerosis (MS).” Thank you doctor drama queen. That story just gets funnier every time I think about it, more so now than back then.
The Neurologist was a nice older specialist, fairly well respected in his field, and he had a much better “bedside manner”. He explained how the disease works, at least what they knew about it. He told me that “Nobody dies from Multiple Sclerosis, they die from complications, or other diseases, or being hit by a bus.” By odd coincidence, someone I knew was diagnosed about the same time across the country. His wife was actually hit by a bus while he was ill. The neurologist told me that there was no treatment, but that research on a new drug was promising and it might be released in another year. The disease was progressing slowly, I had the relapsing remitting form, and the trouble I had with my eye had been Optic Neuritis, my first exacerbation of MS. I signed up for a recently diagnosed support group.
The group was interesting. The MRI as a diagnostic tool for MS was a very new thing, there were people who had spent a dozen years trying to get a diagnosis. MS comes and goes (relapse/remit) so it can be very difficult to diagnose, the MRI was the first tool to be able to see the scleroses (scars) in the brain. Prior to that, the only definitive diagnosis was by autopsy. I began to see how fortunate I was. One girl in our group had the chronic progressive form, she had just fallen down while hiking in Costa Rica a few months before. In the six weeks the group met she went from crutches, to a wheelchair. Then she didn’t show up, and we were informed that she had died. So much for nobody dying from MS.
My step mother, an opticians assistant, took one look from about three feet away and said “oh yeah, you had optical neuritis, I can see the scars”. I looked in the mirror and there they were. So much for Wills Eye Hospital.
Through the years my symptoms have come and gone a couple of times. My eyesight has gotten progressively worse but I’m allowing some of that to actually being older. My balance gets so bad I use a cane at times, once for two years, but I haven’t used it much at all recently. Stress makes my symptoms worse, it seems to drain my reserves and make it harder to conceal my weaknesses. A number of drugs have come out, I tried them all, none had any positive effect. There was one fairly bad relapse about four years ago and my neurologist prescribed steroids by infusion, that was the closest I’ve ever been to death. The steroids wiped out my immune system, I was pale and barely alive. Afterwards I came down with shingles, and the neurologist’s receptionist said “he doesn’t care for shingles” meaning he didn’t treat them. I told her I didn’t care for them either (meaning I didn’t like them) and that he would see me and write a prescription for a pain killer since the steroids had precipitated the Shingles. He saw me, but that was the last time I visited a neurologist.
Once in a while something will happen and I’ll explain that I have MS, like at my high school reunion. I had brought my cane (it’s really cool, black carbon fibre with flames, like Dr. House’s) because I get wobbly pretty fast when I drink, and the cane helps when I explain that I’m not drunk, I just have MS. Most people are visibly shocked, so I have to go through pretty much the entire explanation.
Of course I carry the cane when I travel, it won’t fit in a suitcase and I never know when I might need it. I’ve also found that the presence of a cane implies you are disabled, so I get preferential seating on aircraft.
I am fortunate. Not everyone has the same experience. I prefer to believe that it all comes down to having a sense of humour.