The Gift of a Half-life

Fitting my writing aspirations around chronic illness

Organ donation is called “The Gift of Life.”  I agree with that label because without an organ donor, I wouldn’t be alive. It has taken two organ donors and two heart transplants, to get me here today. But I’m not all here.  My mental presence is impacted by several things, primarily two strokes and several powerful medications. 

One year into my second heart transplant, I received the devastating diagnosis of Coronary Artery Vasculopathy or CAV. This is similar to the normal coronary heart disease that people get in their hearts, but CAV can progress quickly. With my first heart, I went from diagnosis to retransplant almost four years from the day of diagnosis. That first CAV diagnosis came nine years after I received my transplant, granting me nearly thirteen extra years.  This time, the diagnosis came at my one-year anniversary checkup.

There are two drugs known to slow the progression of the disease, but that was not the original purpose for their creation.  They started out as chemotherapy drugs, and they carry the potential for debilitating side effects.

After my first diagnosis of CAV in 2014, we tried Everolimus, but it made me violently ill and was discontinued. This allowed the disease to destroy my heart. When CAV reappeared in 2019, my new transplant center made another attempt with Everolimus, but they were aware of my drug sensitivity and slowly increased my dosage over the course of several weeks, reaching the therapeutic window at one third of the dose prescribed by my first hospital. This lower dose doesn’t make me sick, but it does make me stoned.

Every day, I take my meds at 11 a.m. and 11 p.m. An hour after I take them, I feel intoxicated, staggering like a drunk and incoherent. Of course, driving is impossible in this condition. The length of my daily stupor varies, but I’m generally incapacitated from noon to three or four in the afternoon, and I remain quite fatigued until after dinner.

So, how does this impact my writing? I can’t create great writing, or even mediocre work, when I’m drooling on myself. At least that leaves poetry. (sarcasm font) 

In the morning I can write, run errands, or go to the gym to keep my gifted heart in shape, then I take my pills, eat lunch, and curl up on the couch with my little dog to ride it out until dinner. I attempt to read, but quite often, my eyes won’t focus, and the words don’t make sense. This afternoon downtime takes me back to when I was in the hospital all alone and feeling awful. Curled up on the couch, waiting for the time to pass while I am acutely aware that time is running out because of this slowly growing disease in my arteries.

After dinner, I try to squeeze in a couple of hours for editing, sending submissions, and researching publications to which I want to submit. Creativity doesn’t come easily in the evening, perhaps because I’m tired. Still, I know I have more writing time available to me than many other writers. I just need to figure out how to use it more effectively.

For my fellow writers, what are your tips for making the best use of your scarcest resource – writing time?