Yesterday was … unsettling. Any time you’re meeting with your physician and the words “brain tumor” come out of her mouth, it’s going to make you sit up a little straighter, even if she’s mostly dismissing it as a possibility. Mostly.
As I have noted before, I suffer from a disorder that causes significant vertigo issues and, commencing in the past few years, a condition called Nystagmus. In 2007 I visited a top dizziness expert at the University of Colorado medical center in hopes of finding some good news. I submitted to many tests and the diagnosis was a degenerative inner ear disorder. It was going to get worse, I was told. Also, people who suffer from diseases like this one enjoy an exceptionally high suicide rate. (Although, perhaps “enjoy” isn’t quite the right word.)
I had been a very active athlete my whole life, but not any more. When the condition is acting up it’s all I can do to walk around without falling.
I return to the specialist periodically for another round of tests and a consultation, and in the back of my mind I always foster a faint, doomed hope that maybe somewhere someone has developed a miracle cure.
The latest tests occurred a couple months ago, and yesterday was the consult with the specialist. The results this time were a little different. The onset of the Nystagmus, in particular, suggests that maybe the original diagnosis was wrong. Maybe it’s not inner ear. Maybe it’s neurological.
More tests are headed my way, with the centerpiece being an MRI at the end of the month. The doc doesn’t think it’s a tumor, and she’s probably right – if it were, I’d almost certainly be dead by now. Also, probably not a stroke. Probably not a ruptured blood vessel of some sort. But something is afoot, so let’s find out what.
Another thing that surfaced as we talked had to do with a fairly dire disease that runs in my family. She asked about any possible history of illness amongst my relatives that might be relevant, and I noted that yes, there is a condition on my paternal grandmother’s side that attacks the speech and motor centers of the brain. In her case it reduced her from just fine to a non-functioning vegetable in the matter of a couple months. I have been under the impression that it only afflicts women, but now there is some indication that a great-uncle may have died from it as well.
Problem is we know nothing about this disease, as it is apparently exceedingly rare. My sister believes it is called Mary Holmes Disease, or Marie Holmes, or Maria Holmes. But if you can find information about it online, your Googling skills are better than mine. I suspect that we have the name wrong, and I’m hoping my impending visit with a neurologist, whom one assumes to be an expert in the field, will reveal something useful.
I have a cousin whom I haven’t seen since we were children – Ellie is the granddaughter of my grandmother’s sister, who also died of the condition, so my second cousin – and last I heard she was planning on going to medical school and pursuing a course of research into this disease. Makes sense. If it’s coming for her, she’d be advised to do anything she can to find a cure before it arrives. So I decided to see if I could track her down. Not easy – one presumes that her name has changed as a result of marriage, possibly, and as I say my last contact with her was probably 45 years ago. The people I knew who probably could tell me where she is are all dead.
A bit of Googling and I found her mother’s obituary. A couples sentences into it I hit this, though, and I’m honestly not quite recovered from the chill:
She was preceded in death by her husband, John W. Adams and a daughter, Dr. Elizabeth (Ellie) Craver Pryor.
Her married name in hand, I was able to find Ellie’s obituary. She died of pancreatic cancer in 2005.
The emotional impact of learning I had lost a relative, one my age or a bit younger, to such a horrible disease … I’m still wrestling with it. No, I didn’t know Ellie all that well. We were hardly close as kids and I don’t think she much liked me, which is probably understandable given how I was at that age. But we were blood, and it turns out she had made a distinguished career for herself. I’m proud of that. We both came from a place where distinguished careers are the exception rather than the rule. If you’re working class in the South, as we were, doors only open for you if you give them a good hard kick. I discovered, all in the same moment, that my cousin had made something of herself, only to be lost to her family and community and profession at a terribly young age.
How often does tragedy touch our lives without us even knowing it, I wonder.
Now I sit here, waiting for a battery of tests that will hopefully shed more light on the disease that has robbed me of so much of my life. If the specialist is right, what may be happening is an atrophying of the motor centers in the brain. This is bad. However, there are treatments that may mitigate the symptoms, including some that the FDA hasn’t even approved yet.
Brain atrophy: bad. But treatment: good, especially since there was no cure or treatment of any sort for the condition I have thought I had for the better part of a decade.
On the other hand, what if that damned genetic disorder that took my grandmother and one or two of her siblings in fact does affect men, and what I’m dealing with now is the front edge of something far, far worse?
I obviously hope that the next few weeks brings me some relief – a drug that tamps down the Nystagmus a bit would make a massive difference in my life. But if it becomes clear that the family’s personal reaper has drawn a bead on me…
As I said, it has been an unsettling couple of days, days that have found me turning inward and reflecting on what is and what may come to be. Yesterday’s conflicted series of events may end in what so many people would call a “blessing.” From where I sit, not having to deal with any of this would be a blessing, and I’m not in a mood to have people trying to make lemonade on my dime.
UPDATE 2 – 6/1
It has a name. I apparently have Spinocerebellar Ataxia, and the doctors believe that I have the specific strain known as SCA-6. This isn’t certain, and won’t be without a DNA test, but the symptoms fit.
UPDATE 1 – 4/17, 2:45pm
I feel like I owe everyone an apology. This piece has been received as a dire notification about my condition, and while there are pieces of the story that aren’t great and that could potentially be bad, this wasn’t my purpose at all.
What I set out to do was describe a case where the end news was possibly very good, but the path to that news was all kinds of twisted and confused.
As I pondered telling my friends and family about it, it occurred to me that I was almost certainly going to hear that potential good news outcomes as a “blessing,” and I have never been one to conflate being shot less with not being shot at all. So I wanted to do a little personal narrative about the twists and turns of one guy’s story.
I think in the process of telling the story I may have lost the plot a bit, and if I have inadvertently convinced everyone that something horrible has happened I apologize.
In the short term, the results may be good news, and based on what the specialist had to say yesterday it’s unlikely to be any worse than it already was. In the long term, the worst case is that I have that family affliction. While this may change the timetable – hard to say – in practical terms it doesn’t really represent a different outcome than the one I have been expecting for the last eight years. If that worst case doesn’t come into play, again, what I learned this week, and what I will learn early next month, may prove to be good news.
Again, my apologies if I scared anyone. I have fantastic friends and am grateful that they care about me, and I will try to make sure that I don’t accidentally cause everyone more concern than is properly warranted.