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From Dictionary.com:

fu·nam·bu·list [fyoo-nam-byuh-list]
–noun
a tightrope walker.

Those of us with chronic diseases hear conflicting advice on how we should best cope. On the one hand, we need to move beyond denial, accept reality, and make the best of our situation. On the other hand, we’re advised to never give up, stay positive, and hope for a cure. So which is it?

In my humble opinion, and I have some experience now in this regard, people with chronic diseases need to do both. They need to prepare for the worst by accepting their condition and making the most of whatever time and/or abilities they have left. But wait! Simultaneously, they need to hope for the best by remaining open to new treatments and staying abreast of current research. Walking the fine line between accepting reality and hoping for a miracle is a precarious balancing act.

A well-intentioned friend said to me a few months ago, “If you don’t have hope then you have nothing, right?” I had to disagree. Although I still have hope, I don’t think I rely on it. If I had no hope that my condition would some day stabilize or even improve, I wouldn’t necessarily be left with nothing. I would be left with acceptance, and that’s something.

Here’s another high wire act I’m navigating. I’ve chosen to write this blog in order to raise awareness of the issues facing people with disabilities. So I need to be sincere, forthright, and sometimes even blunt. Beating around the bush or painting a falsely positive picture won’t convey a clear message to the readers. Yet, there is a line that I don’t want to cross.

On the one hand, I am compelled to lay bare the unadulterated truth about disabled life, or at least my disabled life. On the other hand, one of the least admirable of human traits is self-pity. I hope I’ve provided enough commentary here about my intent to live a positive, useful, and even happy life (to the extent possible), that my circumstances do not come across as miserable. Even my parenthetical statement in the previous sentence raises the self-pity red flag, but I’ll ignore it. This is indeed a fine line.

Here’s a third high wire act of mine. Throughout the day there are several activities that are more difficult for me to perform than they used to be. These activities are congregated around the morning and evening time. Getting up, taking care of my grooming issues, dressing, and generally preparing for the day are no small tasks. Then, in the evening I have to undo what I did in the morning. There are certain steps that I still complete with ease. Other steps I can no longer complete. But the steps I’ll address here are the ones that I can sort of still complete.

Take for example, removing my trousers. I can unbutton them okay, and I can stand for the 2 seconds it takes to get them down from my waist to below my knees. Then the fun starts. Since I can’t move my legs, how do I get the trousers that are bunched around my ankles all the way off? I’ve devised intricate steps where I inch the trousers off little by little until I reach the point where I can just pull on both pant legs and complete the task.

Some days this goes well, and some days this goes poorly. Maybe Kim is standing nearby, and maybe she is elsewhere. On the one hand, I want to remain self-sufficient. On the other hand, I can become frustrated, and it is so easy to ask her for help. I walk the fine line with my trouser removing, and with 100 other tasks, between trying to maintain my independence and knowing when it makes sense to ask for help. The kicker, with a progressive disease, is that the line keeps moving. Oftentimes, a task that I am able to complete today, I’ll struggle with tomorrow and forever after. Imagine a tight rope walker uncertain of exactly where his next step should be.

Those are just a few examples of how I’ve become such a proficient funambulist, but not the kind that anyone would pay money to see. My high wire acts do not entertain spectators, yet they are no less perilous than the ones carried out by circus performers. Maybe I’ve got it all wrong. Perhaps I could sell tickets for people to watch me conduct a Google search to determine if Bee Sting Therapy is a cure or a scam, look over my shoulder as I proofread my blog drafts, or sit on the edge of my mattress and watch me struggle to put on my flannel pajamas?

Or maybe a reality TV show…cameras stationed all over my house.  I’m calling the networks.