By Soania Mathur
This is why I feel diversity and equity in the world and without exception in the Parkinson’s community at all levels is important. And this is why I am part of the PD Avengers.
You must be an active participant, take control, become empowered in order to live well with chronic disease…Dr. Soania Mathur
“For me it began at 27 years of age, a slight tremor in my right pinky finger, just as I was completing my residency in family practice and starting my career as a physician. At first I was more medically intrigued with experiencing a symptom that I had heard so many patients describe. But then my concern grew as the tremor went from sporadic to continuous and that’s when I began to experience medicine from the patient’s perspective. The frustration at the lack of control I had over my own body, the desperation I felt when told of the diagnosis of Young Onset Parkinson’s Disease
and the fear of the future. And through it all, relentlessly, the tremor worsened in my right hand, then my right foot, and ultimately progressing to the left side of my body. The effects transcended into my work, my social and family life. It made itself known from the moment I awoken until I fell asleep at night. All during a period of time, that I felt I should have been in the prime of my life.
Adjusting physically and emotionally has been a challenge and now at 48 years of age, I have lived with the challenge of PD for over two decades. It has been a time of change – change in my body, an increasing tremor among other symptoms and a number of medication trials. Through it all however, life goes on and I’ve learned that to focus on the negative alone changes you into a person that isn’t living life but instead just getting by. At some point you have to surrender your fear of the future and begin living your present. I now understand that the diagnosis is simply not within my control, but how I face this challenge is mine to determine.
I now focus on my blessings, ones that perhaps I would not have recognized had it not been for this condition. It has also been a wonderful time heralding the births of my three precious daughters, the strengthening of an already wonderful marriage and the building of a successful career. Now the “why me” has been replaced for the most part by the “why not me”. Better me than my children or anyone else that I love. Better me than someone else who has to face this challenge alone. Because that is how I view PD, not as a disease so much as a daily challenge.
And it is not a unique struggle, there are millions of people living with any number of chronic illnesses including Parkinson’s disease. And that is where my focus lies, on those people suffering the disability that can come with chronic illness.
No one really knows what life will bring and although I have a glimpse into what the future holds for me, I am ready to face it head on. To paraphrase the words of Phillips Brooks a noted American clergyman and author, don’t pray for an easy life, pray to be a strong person. Words to live by.”