Inspiring you to live well with Parkinson's disease
In sickness and in health… regardless of religion or cultural background, this vow usually makes its way into most wedding ceremonies. But how many of us in our relative youth at that time, actually truly understand what those words mean. “In health” is the easy part of course but what happens when unexpectedly some sort of chronic, serious illness decides to intrude on your perfect union?
That’s exactly what my husband Arun and I faced over fourteen years ago. We were married just five years when my symptoms began. And despite my desire to hide my head in the sand, he’s the one who encouraged me not to ignore the tremor. He was the one I ran to, my eyes full of angry tears, after the first neurologist had the gall to tell me he felt I had young onset Parkinson’s. He sat holding my hand when months later the second well-renowned movement disorder specialist confirmed this life sentence despite my desire to be absolved from the initial diagnosis. He listened to what my physicians were recommending and took care of the practical side of things when all I heard were words and nothing was registering. And he was the one who held me close and comforted me as the numbness of a harsh new reality set in. He persevered through my years spent in denial, anger and fear, bearing the brunt of my frustration and confusion. He simply, was there – unconditionally. His love was unwavering despite how “broken” I often felt.
I now recognize how much of a blessing I have in him because just as Parkinson’s affects all other aspects of our lives, marriages also change and not always for the better. Like any life altering event, a chronic illness can either strengthen your relationship or the union may not be able to withstand the challenges that it brings.
And I’ve heard and witnessed many sad stories of spouses leaving shortly after a diagnosis of Parkinson’s is made, leaving their former loved one to deal with their angst alone at a time when they need support the most. From the outside it seems so cruel, so heartless and I’m sure in some cases it’s unexpectedly so. But most times, the marital problems have been festering long before this challenge presented itself. Sometimes two people are not necessarily meant to be together and it has nothing to do with the PD at all. The diagnosis just serves as a catalyst for the marriage’s demise.
And then there’s that gray area, those partners who stay on but are not helpful or supportive. To those individuals I ask – why? Why do you add to the stress of the one you pledged to care for? Do you not understand what stress does to our symptoms? Do you not see how much we need stability as our bodies become more unpredictable day by day? Do you not see that we need you to be a soft place to fall? My heart goes out to those facing this challenge essentially alone. To you I say – life only demands from you the strength that you possess. (a quote by Dag Hammarskjold). You will persevere.
Thankfully though, for many of us our partners step up to the plate, hold our hands and walk with us down this sometimes treacherous path. We are reminded of the relentless nature of this illness by our bodies even if we want to forget and we recognize the personal stress we feel when dealing with our day to day lives.. But what about our loved ones who are also going through this experience with us? Sometimes we do get lost in our own stress - that’s normal human nature. But it’s important to recognize the stress that they too face, watching the one they love suffering with an affliction that they have no control over. It is equally important to recognize the life commitment that they have chosen to honor. For those that support us through the daily and at times monumental hardships, that still love us despite our emotional highs and lows; for those that continue to comfort us even when we’ve pushed them away “because they don’t understand” – for those that hold us up when we would rather fall at times, I have the utmost and deepest respect.
I asked Arun once, a short time ago, that if he knew about the future, about my Parkinson’s when we first met close to 24 years ago, would he have signed on for this journey? What would he have said to that naïve 17 year old girl the first time we met? His answer was quite simply, “What time should I pick you up?”…