Parkinson's and the Peril of Pride

At 90 years old Gwendolyn should have been deserving of great admiration, even if just for outliving her husband, Arthur, most of her friends and all of her siblings. But in her unbending determination to live "independently", her greatest strength became her greatest weakness (as it often does).

She had started falling several years ago; each time without any apparent reason other than the loss of balance caused by Parkinson's. Each time there was greater bruising and more significant risk of breaking the brittle bones that outlined the frame of her stooped body. But she refused to use her walker most of the time. She seemed to prefer shuffling along in her slippers (aptly named) and, when slips occurred, clinging to the nearest unstable wall of her yesteryear house. She desperately wanted to believe that she still had control over her body, despite its uncooperative convulsing and "freezing" from time to time due to her PD. She was convinced it was her body that allowed her to reign over her tiny, and like her often inexplicably too warm or too cold, personal domain. For it was the home she had lived in the last 55 years of her life. There, on March 26 each year, she continued to celebrate her wedding anniversary for the past 20 years, with Arthur occupying only her memories and imagination rather than the overstuffed corduroy chair in the corner under the burned out reading lamp. She would not accept that her slowly dilapidating home and less slowly degenerating body no longer afforded her the freedom she had once known. And refusing help from others who could reclaim or retain some of that freedom for her had converted her laudable courage and determination into irrational, and even hazardous, stubbornness and pride.

It was pride, and not forgetfulness, that dictated she would not be wearing her emergency "call" button necklace, when she fell last month, resulting in her spending several afternoon hours on her bedroom floor, unable to move, waiting for someone to arrive and help her onto her bed only a matter of a few feet away. Given the frequency that her children called upon her each day, this proved not as perilous as it could have been. However, the latest fall had occurred during a midnight trip to the bathroom. While resting on the edge of the tub, having felt a little lightheaded, she fell backwards into the porcelain prison where she remained a bleeding and helpless captive, shivering through the night out of fear and and its affect on her tremours. In the morning, after a stay in the emergency ward of the hospital, a quickly convened family meeting unanimously concluded that, "Something had to be done".

The sad irony of this true, and oft-repeated, story is that unyielding insistence upon independence can result in loved ones feeling forced to take away the ultimate self-governance: the ability to decide. Gwendolyn's refusal to acknowledge the need for help forced her children to make the decision for her. Strange isn’t it that parents raise their children to make independent decisions so that later in life those children will make decisions for those same parents, making them quite dependent.

Hearing about Gwendolyn has made me realize that independence is mostly a myth. It strokes my ego and strengthens my pride, but it can be much more debilitating than the Parkinson's I carry in my body. Of course, there is a place of balance between "crying wolf" and bawling for help at the slightest threat, and unnecessarily sustaining harm through carelessness. Staunchly refusing needed help can be descriptive of an immature 2-year-old or a stubbornly unwise octogenarian. Learning this lesson now, before my German stubbornness becomes totally entrenched in risky habits, seems like the right thing to do. It is not giving up on living, or surrendering my autonomy; it may simply be the first steps towards honest humility and a recognition we all need help to be and remain truly independent.