People sometimes speak of having “an awaking.” This generally refers to some moment in time when they “wake up” and see the world in some whole new way. This is not always, but mostly, in reference to some sort of positive change…a kind of “ah ha, I finally get it” kind of thing. Well, its 1:22 am and I am up for what is my 3rd night in a row. I haven’t slept for more than a 20-minute stretch in almost 72 hours. My “ah ha” realization……This is absolutely the worst thing I have ever experienced. I want to sleep, I’ve tried to sleep, but it’s just not happening. Believe me, I wish I could say that this has been some sort of mind-altering and perspective changing event where I’m just flooded with some new-found wisdom and understanding of the world. Well, here’s my revelation: Parkinson’s is a terrible disease. It’s bigger than me. It’s bigger than some half-baked gesture to prove something to myself. I’ve crossed the finish line 5 times with a sign that reads, “I have Parkinson’s, it does not have me.” Tonight, this week ,and I’m afraid, very afraid, for the next several decades, it does have me and currently it’s kicking my ass.
This latest bout of insomnia serves as a good example of how confounding PD can be. I’m in the process of cycling off a medication that I didn’t feel was helping enough but was giving me fits with some undesirable side effects. So here I am in this hell of being wide awake and exhausted at the same time. Then comes the questions. Is this a result of cycling off? Is this the disease? Or is it something else? Answer: Your guess is as good as mine or my neurologist’s, for that matter. So, little is understood regarding PD and the experience can be as individual as the person suffering from it. Then I find this little nugget while researching the issue regarding PD and exercising: “Getting moderate exercise during the day can help ease restlessness at night. But vigorous exercise, especially close to bedtime, can have the opposite effect in some people.” Crap! I have a suspicion that whoever did this study would consider training for an Ironman and doing 8 endurance races in 12 months as vigorous. I’m starting to get this “damned if I do and damned if I don’t” kind of feeling.
I mentioned earlier that Parkinson’s is bigger than me, and it is. However, what is also clear to me is that I have something that is much bigger than any BS Parkinson’s can throw at me. I have FAITH. Faith in a heavenly father who created me, who loves me, and who gave his only son to suffer in place of me. I only need to hang out on that last part for a few seconds (he gave his only son to suffer in place of me) Then I realize that missing some sleep, dealing with exhaustion, and being filled with anxiety is only serving as a reminder. There are bigger and more spiritual things at work. So, my training will continue. My quest for MyGreat8 will be complete. And it will all be done through the assurance that GOD is with me. My training mantra that I have engraved on my RoadiD bracelet is this: Philippians 1:6 “Be confident of this, that he who began a good work in you will carry it on through to completion until the day of Christ Jesus.” You, me, we are all “works in progress.”
See you at the finish line.