Welcome to the rest of your life! You have been diagnosed with an incurable, progressive disease. You stumble out of the doctor's office shattered and disoriented. People are talking, but you have no idea what they are saying anymore. Streets in your city no longer look familiar, there is a wad of cotton in your throat and your legs are wobbling as if they are on upside down. You can't find your damn keys or even imagine driving home -but at least you have a prescription for meds that are supposed to help.
These side effects of these drugs are about to rock your world! It’s also true that you are about to experience a grief so consuming you will never be the same. Please don’t get upset, I am merely playing messenger for something I wish I’d known sooner. If you don’t let go of the illusion of control, you’ll suffer even more.
The stages of grief cannot be avoided and any attempts to suppress them are useless. Anger is a natural response to feeling betrayed by your own body. From this day forward, you will no longer be able to count on your own body. You will never again know the ease of being able to rely on your own basic capabilities, from one hour to the next. Basic tasks you took for granted will become increasingly difficult, but that part is nothing compared to the potential for crippling depression and anxiety.
The people you counted on may leave. This is going to hurt. You might feel as if you want to die, but you won't. I am sorry, but I’m here to remind you that the best human beings you'll ever know will take their place. Given the demands of your new life, you have no choice but to let go if someone insists you continually explain yourself. You now have more pressing concerns. You feel an abnormal sense of impatience because your timeline has been crushed.
Will I fail to get the contents of this trip together and zip up the bags in time? Will I be unable to pull out the correct paperwork and identification on cue, find dependable yet affordable transportation and get through a perplexing labyrinth of stairs and impossibly heavy doors with this broken-wheeled carryon? Will I miss this flight as people in a hurry rush by and push me out of the way? Will I pee my pants or will cruel dystonia curl my left foot before I even arrive at the airport?
The answer is yes, my flight took off without me, just like old friends and lovers.
The good news is that there will always be another flight. If you live with a neurologic condition you can posit travel will be a challenge. In general, you can also expect to be misunderstood, so you may as well practice not taking things personally. The unaware and uninformed will judge, because they are using a limited template based upon their own relative health.
We are all consumed by our own problems and viewing things through our limited lens of experience. This makes it difficult to grasp how people living with diseases that don’t always show feel in situations that seem so easy for everyone else. How can we expect anyone who has not been educated about symptoms, side effects and chronic pain to know any better? For the record, it isn't their job to dig for answers we can provide simply by communicating our experience.
Are you prepared to have your plans demolished? Any relationship not rooted in LOVE and flexibility will disintegrate, especially if the other person refuses to ascertain an unwillingness from an incapability. Like a toddler, Parkinson's offers no positive response to outside influences demanding it be immediately tamed. Though you may be successful in managing this journey to hell and back, there will be missed flights and missed opportunities.
This is maddening! It's enough to make you want to scream and punch things. Infinite amounts of work and energy are required to survive and thrive in this journey. We don't have time to wallow in self-pity or stay down.
Are you ready? I am.
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