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.
Jesus. Richard.
You don’t know what I see? Well, let me tell you. Back when we saw each other every day, I thought you were pretty hot and a little smug. Yeah, that’s right, a little smug. But also pretty damn smart, and I like that in a person. Since we’ve reconnected on Facebook, and I know you only by what you write there and here, I am astounded by your resilience, and in awe of your strength. (And I still think you’re kinda hot; tall, dark and handsome has always been my thing.) I’ve never considered suicide (Jesus. Richard.) but I’ve been in some state of clinical depression for the last 20 years and when I’m in a good place and I look at my life — and compare it to yours — I feel like a whiny, petulant child. If I’d ever had any real adversity I think I might have rolled up and died.
I know that people expecting that strength of you is a mixed blessing — helps you go on and feels like a burden at the same time. I don’t want to burden you with my expectations of you, but I hope your strength and resilience carries you through this adversity too. And that you get to have a fifth chance at the life that should have been handed on a silver platter years ago to someone with your talent. I’m thinking good thoughts and keeping my fingers crossed and asking the Fates to please stop fucking around with you.
I don’t have a well polished way to say my opinions. You are a very strong person and I admire how you deal with your condition. I keep hoping that the medication will be found or the treatment will be suggested that will give you some peace.
You have walked a very rough road and I am praying that relief is just around the corner.
I have not met a more cordial, thoughtful and sincere man. I thank God each day for my daughter finding you.
Be confident that you need not explain your condition or feel sorry for your actions.
Peace to you.
It’s a zombie tumor. It’s gonna take another round to kill that little f*cker good.
Richard – when we were young, you were the cousin us “girls- cousins” were all in love with…..you were gorgeous, kind and smart. From where I sit, the years have only enhanced those qualities…..deepening them from within, making your internal beauty more striking than ever. It comes through in your words, your kind acts, your caring (for your mother all those years in particular), and yes, in your tremendous patience. How can you possibly say patience has eluded you?? You embody patience…..with your illness, the medical community, family members. If exploring and researching every possible angle of your illness, and patiently asking the same questions over and over of those less commited to finding answers, is not patience…then I am at a loss as to what is.
My dear cousin, I won’t spend a lot of time listing your qualities that sadly I have only been able to observe from afar. I don’t think that is what you are searching for or in need of right now. But I am distressed to read your thoughts on a life wasted. Really? What have any of us done with our lives but struggle to find meaning, to make a humble contribution, to connect with others, to survive any ill fortune, to love and be loved? Seems to me that far from wasting your life, you have moved through it, garnering wisdom and knowledge along the way that you have always, and can continue to generously share with others. ( A very concrete example is your guidance in getting my daughter through her sudden and frightening bout with migraines. Where would we be I wonder, had you not showed us the way out of that tunnel?)
You and I are at that age when we are looking back and wondering what we have done with the fist half-century of our lives and what our next move should be. I grind on this daily, tempted to make drastic changes and turn the paradigm on its head…but always scared…..not sure I have the energy or the intelligence. So you are not alone in this respect. And it sounds like you see an opportunity, in a less painful environment, to embrace change. That is extremely hopeful and full of light.
I will be in Halifax at the end of the month and would love to talk to you about this further. In the meantime, take courage my friend in the knowledge that you are loved.