Chapter 13: Riding on Hope
With no clear leadership to be found, war weariness sets in and threatens to sap the spirits of a dying father.
Whoever you are, if you’ve been reading my posts the last 3 months, I apologize for the whiplash you’ve surely received from the rollercoaster that is my life. After putting Iris down last night, I re-read all my entries for the first time. Pardon the language but holy shit!
I’ve received some concern over the tone of several chapters. As if I’ve wavered in my conviction to be the first ever survivor of ALS. I want to take a moment to assure you that couldn’t be further from the truth. As humbled as I am by this disease, my confidence is still very much intact. Fully believing I can make history, I’m just as cocky as ever.
I posted motivational sticky notes all around our house to psyche myself up and remind me of my commitment to Iris.
But after scrutinizing my story from start to present day I can further promise you that I’ve been honest about what I’m going through. And that includes the very real fears about what’s at stake here.
So when I say good bye to the parts of my life I am losing, it’s my intention to honor and appreciate that which I took for granted, not to raise the white flag. The path between hope and emotional integrity is a difficult road to traverse. Because there’s no guarantee that even when I beat this, I’ll get back everything I’ve lost. But I CAN guarantee you that if my hands and voice return, I’m going to throw the biggest concert I’ve ever produced!
Right now my primary goal with these writings is not to be inspirational (though it makes me happy when they have that effect), rather it’s to tell the truth about one man’s journey as he walks through the fire. This is a horribly cruel affliction and I mean to bring you along for the ride. But at the same time, I would understand if you wanted to get off. So do I.
Back to last night, before my deep dive into chapters one through twelve, Iris and I had a moment while I was rocking her to sleep. And in that moment I felt I wasn’t doing enough. I had more to give. My daughter sensed it as well.
“Fight harder daddy,” I could hear her say even as she lay fast asleep on my shoulder.
Earlier in the week, Jamie and I had our 3-month clinic visit with our neurologist and care team. By most standards the appointment went well. On one test my breathing scores were down only slightly and on another they actually went up. I attributed this success to my continued workouts as well as the EMST device I purchased to help me strengthen my respiratory muscles.
My ALSFR score went down 2 points from a 45 to 43 (48 is a normal healthy person). This drop, however, is considered to be a relatively slow progression given the time frame. So we were pleased.
Now please lower your safety harness because, unfortunately, things are about to get a bit bumpy.
It has become painstakingly clear that our neurologist views his job less as figuring out how to save my life than making sure I’m comfortable while I die.
He throws shade at most research trials we bring to him even though he is not current in his own education. A major frustration my wife and I share.
He will not prescribe medications on a compassionate basis (if they aren’t approved for ALS specifically), even if they have demonstrated promising efficacy. Fortunately, I have a primary care physician whose father died of ALS whom I now go to for all my experimental needs.
And lastly, most PALS (persons with ALS), including me, receive little to no encouragement from these specialists even though there’s never been a better time to remain optimistic. It’s a crime, and we let our local ALSA chapter know as much.
Needless to say we are interviewing doctors elsewhere because we have no room on our team for practitioners so scared to give “false hope.” You’re either hopeful or you’re not.
As is too often the case, the responsibility to do the work needed to survive falls squarely on the patient. And this patient isn’t doing enough.
I’m reading a book written by a doctor who has a rare terminal illness. This man realized no one in the room knew how to save him. So he figured out how to save himself.
“Hope cannot be a passive concept. It’s a choice and force; hoping for something takes more than casting out a wish to the universe and waiting for it to occur.”
If there’s one thing about this disease I know, it’s that it is relentless. So that’s exactly what I need to be as well. Buckle the hell up.