Inspiring you to live well with Parkinson's disease
I sigh as I turn away from the computer screen, loud enough that my husband glances at me with a look of concern. I just finished reading a Facebook post. Yet another friend in my Parkinson’s community has reached out, devastated that her spouse has ended their marriage. “He couldn’t handle the uncertainty of the future.” she had written. Uncertainty of the future? The future is in its very essence, uncertain. Who can predict what will happen tomorrow? Regardless of the PD, you never know what challenges life will present.
My husband has now closed his laptop and is listening to me release a wave of expletives as I recount what I have just read. Ironically, just prior to my ourburst, he had been surfing the Internet, looking for a romantic destination to celebrate our upcoming 20th wedding anniversary.
I recognized at that moment how truly lucky I am. Lucky to be planning a celebratory vacation, not having to deal with the stress of marriage about to end. Knowing how important it is to have my husband’s unwavering support, it saddens me to hear time and time again these disheartening accounts of betrayal and desertion. Why does this happen to so many wonderful individuals whose lives have already been inextricably altered by those two words – Parkinson’s Disease? To be abandoned by someone who once professed to love you at a time when their support and unconditional love is most needed, must be heartbreaking.
Is Parkinson’s Disease such a dire life sentence that it is able to dissolve what started out as a strong union? I really don’t believe it is the Parkinson’s itself per se. Instead when I hear these stories, my initial reaction is to assume that the marriage was in trouble long before this life-altering disease was diagnosed. That if it wasn’t the Parkinson’s, some other life stressor would have led to the marriages demise. After all just because we have Parkinson’s does not make us immune to the more common issues that cause marriages to fail. And some individuals are simply unable or unwilling to stand by the one they proclaimed to love, honor and cherish, once their shared journey takes an unwelcome turn.
There are also marriages I’ve witnessed that start off fairly strong, whose spouses don’t initially shy away from a diagnosis such as Parkinson’s, their intentions to continue the relationship and lessen the burden. And yet, sometimes even these unions also come unexpectedly to an end while others thrive and grow stronger with time. Why is that the case?
Some of the problem I believe lies in the chronic and unrelenting nature of this disease. It challenges us daily both in the physical sense as well as emotionally as we face a progressive assault on our abilities and our self-image. The stress of our disease today may become amplified in the years to come and potentially in some cases, may overwhelm the coping capacity of our life partners.
Personally Arun and I have seen some very dark times and have weathered many challenges that this disease and life in general has presented. Yet somehow we’ve persevered. How have I been lucky enough to have my marriage grow stronger in the face of a chronic illness such as Parkinson’s? The gentle nuances and friendship, the interdependence that my husband and I now enjoy certainly didn’t come without its share of challenges. In the early years following my diagnosis, this disease robbed me of my self-esteem and confidence. I watched in disbelief as my body began to disengage from my brain, not following the simplest of commands “Stop moving!” And as the burden of this condition grew so did my frustration. Nothing could make this better. More significantly, no one could make this better. So when my husband would try and comfort me telling me that everything would be ok, all I heard were false reassurances. How could he possibly understand what it was like to lose yourself, to have to remit control to an invisible enemy? And how could he be so confident about the future?
But what else could he do? Looking back, during those initial years nothing he ever did or said was “right” in my mind. If he tried to console me or heaven forbid help me out with a task, it was met with a glare and harsh retort along the lines of “”I can do it, I’m not an invalid!” And if he did nothing or carried on with his day without acknowledging my PD, he was accused of not caring. It was a game of push and pull that he was destined to lose. The strength of my own anger and frustration towards my diagnosis was unyielding and I built a proverbial fortress to shelter myself from the pain of my reality. I was unreachable.
It wasn’t until I actually emotionally came to terms with my diagnosis years later that those protective walls eventually crumbled and our connection was renewed in a very deep way. And with my own acceptance of this new life circumstance came the realization that although I was the one who physically experienced the frustrating symptoms of this disease, the Parkinson’s diagnosis was really not mine alone. This was and is truly a family diagnosis. I now can see how painful it must have been for Arun to see the person he loved suffer and not be able to make it better. How frustrating it must have been for him to try his best to support me only to have his efforts thwarted time and time again. How he must have mourned to some extent the loss of a future he had envisioned prior to the Parkinson’s.
Perhaps his character, integrity and empathy are what attracted me to him in the first place. But regardless I am grateful that I can count myself among those whose partners truly understand and respect the sanctity of the “in sickness and in health” vow we make to each other in some form or another. And who recognize that this commitment is a mutual one. I am blessed that Arun persisted. He understood the emotional turmoil that was consuming me and he didn’t falter in his support. He accepted me and my diagnosis far before I was able to do the same.
As I think about those that have not benefited from a supportive life partner I recognize that I am no more deserving of a meaningful relationship than anyone else. I have no magic answers as to why our relationship has thrived. There are however definitely some lessons we’ve learned along the way to help us navigate this journey as a couple.
First we share a genuine feeling of optimism for the future. Based on knowledge and research, we both feel that better treatments and eventually a cure are in the tangible future. This hope helps us move forward. It allows us to continue to dream about traveling after retirement, planning our daughters’ weddings, growing old together. We visualize a healthy, productive life as a couple, not one marred by disability.
Secondly this experience has taught us to appreciate what’s truly important in life, to reprioritize our responsibilities and delegate our attention and time with awareness. We now know the importance of living life in the moment, value highly the time we spend together as a family and the importance of our extended relationships.
Our focus now is also on better communication. Honestly expressing our needs, fears and concerns more clearly significantly reduces the number of unmet expectations and resulting disagreements.
And most importantly we recognize that Parkinson’s is only part of our lives and we are determined not to allow this disease define our relationship. Truthfully this disease has brought us together, made us stronger. I hesitate to say, but perhaps more so than we would have been if we didn’t have to deal with this diagnosis.
This focus however cannot be one sided. No matter how committed one partner is, if the other is not ready and willing to embark on this path (or learn how to) regardless of the uncertainty of the outcome, the relationship will not survive.
As I look at Arun, his attention now returned to his laptop screen, I think back to my now devastated friend. I know in her case it wasn’t a lack of dedication to the marriage on her part. But I begin to realize that it’s not hers or my strength of commitment, willingness to compromise and most importantly to love unconditionally that is responsible for the success of any relationship. None of that does a strong marriage make unless the partner you are blessed with feels exactly the same way.