My mother delighted in telling everyone that I was a know-it-all — a highly-educated pain in the ass. In the complicated way that families are, she seemed so gleeful when circumstances knocked me on my keester.
I wonder what she would say to me now that I’ve learned that I was right, and a legion of brilliant doctors were wrong?
I certainly take no solace in the win.
For years, I have asked every specialist who would see me if my pituitary macroadenoma might be causing the migraines that afflicted almost every waking hour. As irony would have it, the only doctor who told me that salvation might come in the OR was the neurologist I saw just a few weeks before my scheduled neurosurgery.
So I’m happy to tell you that this one guy knew his shit. The surgery was a success.
The Good News
I have been suffering far fewer migraines over the last two months, maybe seven or eight in total. Compare that with 20-25 per month over the last five years — which itself is a vast improvement over the daily migraines I endured for 14 years before that.
The good news continues. The relentless facial and sinus pain is gone, and I feel less fuzzy-headed than I have in nearly two decades.
As victories go, it’s so poignant and so bittersweet. I now have a fourth chance to do something with my wasted life.
I understand that it might not be my fault, that circumstances have been uncommonly cruel. But I’d be lying if I said felt like anything other than a failure. And so I look back now at 20 lost years. At nearly 7,000 soul-destroying migraines. At a life so lost and hopeless that I planned to end it a dozen times.
I don’t know what you see here, but the man I know feels broken and isolated. I rage because my life has been such a fucking waste.
The Not-So-Good News
But I also know that there is some strength in me yet. That I will twist and turn in this dark tunnel until I can see a hint of light overhead. That I will always reach, perhaps out of habit, for some root to grasp so I can pull myself from the mire.
I need this strong side again because the neurosurgery was a failure.
I learned this week that a slip of tumor remains, snug against my pituitary gland. I have to believe it’s growing because they would have noticed something this big during my operation in April.
My silence on Telling Stories is the surest sign that I’ve been struggling, slipping towards another one of these events. I have largely lost all hormone function, and the symptoms have been deeper and more profound than I expected. I have been too tired to get out of bed, but too sore to stay in it. My joints and muscles have been too weak to walk up a flight of stairs, too sore to pour water from a jug, too shaky to hold my coffee mug between sips. I have adrenal insufficiency, anemia, and diabetes insipidus.
I’m losing. The house has missed its spring clean up, the garden is thick with grass and weeds, and I struggle heroically through each and every work day. Kristina is pulling extra hours trying to make up the slack that comes when I can’t nail down a full shift.
If I look to the horizon, I won’t see the cavalry. My blood work has confounded the specialists, so I will be spending several days this summer in the hospital undergoing intensive tests to determine just what I need, and what I can do with out. I want them to give me everything, no questions asked. But it’s not like it was when I was research patient. I’m just one among many in an overburdened department. They’ll fit me in when they can.
I know that patience is wisdom’s perfect companion. It seems I need both, but they have so far eluded me.
Practice What You Write?
About four months ago, just before the surgery, I was in such bad way that I couldn’t make a circuit of the Seaport Farmers’ Market without resting on a bench. After a time, an older man joined me.
After a few minutes trickled by companionably, I glanced at him. Amazing. It was my old endocrinologist, the doctor who left me dangling from his rope of godhood when I first became seriously ill. The doctor who, if memory serves, told me that there was nothing wrong with me that dropping 20 pounds wouldn’t solve. Who refused to run blood tests to confirm his pronouncements from the pulpit.
I flushed, emotions surged, the world grew small and intimate. I believe that he knew who I was, and that he knew he had screwed me over.
I wrote a whole novel about the power of forgiveness, but found not a trace of it in my heart on that day.
I stood up and walked away, my legs shaking—whether with weakness or anger, I could not tell.