You Have Parkinson's Disease
"You have Parkinson's Disease." *cue dramatic music*
When I received my Parkinson’s diagnosis at the age of 28, it felt like my life had prematurely ended. Understandably, this might sound a tad hyperbolic and perhaps even a little melodramatic, but it isn’t.
The word Parkinson's was barely in my lexicon. If someone had asked me the day before receiving that fateful diagnosis what I knew about Parkinson's disease, I would have smirked and quipped… “Uhm, I don’t know… maybe that it has the word 'park' in it?”
But, now this scary, looming, unfamiliar word had been foisted upon me, hitting me straight between the furrow of my brows. There was no ignoring it.
A frenzy of questions
Thankfully, I had a beautiful, healthy, and happy 6-month-old baby girl.
But dread filled my heart and worry consumed me as a flurry of destructive thinking scurried into my mind.
- How would I raise her if I was going to be disabled for the rest of my life?
- What impact would this diagnosis have on my marriage?
- Would I ever work again? Would I end up in a wheelchair?
- Was there something I could have done to avoid this devastating diagnosis?
- Was it my fault?
A frenzied flurry of consistent and cackling thoughts scattered in my head. Round and round, like a merry-go-round... taunting, teasing, and berating me. Needlessly kicking me when I was already down.
I did not sign up for this
Although Parkinson's had crippled me physically, unbeknownst to me, my thoughts and inner dialogue were crippling me mentally. Numbness and shock added to the feeling of paralysis. This was not my reality. It could not be.
Wounded body, mind, and spirit. I felt like I was completely depleted and extinguished. There was nothing more I could do or offer to my loved ones. Daily living was onerous and cumbersome. The smallest task required an insurmountable effort. I detested my dependency on people. A complete loss of independence and dignity.
Above all, the lowest point was when my mother had to give me a bath. Sitting in the bath, painfully sobbing. I watched my tears being washed by the running water.
Like my tears, I longed to disappear and to be washed away. Far, far away from my present reality. Living in this broken, mangled body was too hard. I wanted a refund. An exchange. An exit plan. I did not sign up for this.
My body betrays me
As the days progressed, existence became harder. Seeking the glimmer of light and flecks of hope in the raging thunderstorm that was my life became impossible. For instance, putting one foot in front of the other became an insurmountable task.
My legs felt weak and shaky. Like matchsticks, which were holding me up. They were on strike. I shuffled when I walked. My posture stooped. Seniors who were 50 years older than me had better posture than me.
Seemingly simple tasks, such as making a cup of tea or brushing my hair demanded a herculean amount of effort and strength. Being alive was exhausting. I helplessly and desperately grappled for some semblance of normality. But, it was pointless. It never came.
Holding my baby girl was near impossible. She weighed absolutely nothing, yet my limbs were wracked with so much rigidity and stiffness, I was unable to cuddle and hold her- the most precious person to me in the whole world. I felt betrayed. Hurt. Let down.
Losing my sense of self
The electrical current to my limbs seemed blocked. In other words, I silently will them to move. To obey my commands, as they had done so for 28 whole years prior to now. But, nothing.
Each time I stubbornly pushed against the resistance… they shuddered and trembled under the extreme enormity of the physical exertion. My precious limbs felt like they had been filled with concrete cement. They were on strike. Extinguished. Non-responsive and non-compliant.
I was no longer the master of my own body. It had forsaken me. So I slept and wept. Slept and wept. Silently hoping for some comfort and relief to come my way. Desperately praying for some respite and relief from the endless despair and depression that threatened to engulf me.
However, eventually, hope and relief managed to seep into my world in January 2014 in the form of a little pill with the word "Sinemet" printed on it.
To be continued...
Have you or your loved one had issues with medication timing?