"You have Parkinson's Disease."
Not what I was expecting to hear from the foremost expert in movement disorders to whom I had been referred to by a neurologist colleague. Instead I was hoping to be exonerated from what was obviously a ridiculous first opinion. What had started out as an intermittent tremor in my right finger had now evolved into a diagnosis of a progressive, incurable neurologic disease. As a physician, I should have seen it coming, the tremor had progressed and had become more consistent, my arm felt stiffer and I was having more difficulty with my fine motor skills. What I didn't expect was to hear such a diagnosis now, as I embarked on a new chapter in my life, at the start of my medical career, as I was expecting my first child -- at the age of 27.
In my case it was a diagnosis of Parkinson's, but the same general scenario is not unique. Millions of people face the same type of situation everyday - the disease they are diagnosed with may be different perhaps but life altering nevertheless. Chronic medical illness knows no boundaries, and does not discriminate on the basis of age, gender or ethnicity. At any point in our lives, our worlds can change in an instant with a physician's simple conclusion. And the journey that comes after such a declaration can be the most difficult of all but regardless it is one that must be made - both physically and emotionally.
For me, once my diagnosis was given to me, my dance with denial, anger, fear and secrecy began. As the tremor worsened in my right hand, then my right foot, and ultimately progressing to the left side of my body, I immersed myself in work and our growing family. And that growing family eventually included three beautiful daughters. It was easy for a short time to distract myself with the joys of motherhood - children and their innocence and joyful attitude are therapeutic in their own right. But despite the "happy face" I needed to put on for them, beneath the surface I was in a constant state of emotional turmoil.
For a long time, I focused on the difficulties I faced on a daily basis and all that I felt I was giving up. Primarily because it was not my choice to slow down, I was not given the option. My husband and I were both enjoying parenthood, we both had blossoming careers, and we were building a new house. Life should have been ideal considering all that we were blessed with, but there was always a shadow hanging over me.
This progressive neurological disease was taking over my body, stiffening it in the morning, cramping my feet to the point it was difficult to walk, amplifying my tremor, causing significant upper back and neck pain and turning my nights into restless exhaustion. There was no escaping it. I mourned the day I had to give up assisting in the operating room, and suturing in our urgent care. I hated the fact that I had to time my medications so that my hands would not be shaking when I gave immunizations or dressed wounds. It infuriated me that the tremor would give me an air of nervousness when I was sure in my knowledge and skills. And it was extremely difficult to try and do what was best for my patients, to help them through their medical issues while trying to hide and manage my own symptoms. The Parkinson's was slowly relentless. And it followed me into all aspects of my life - from caring for my young children to taking care of my home to my relationships with friends and family. A simple invitation to a social event entailed careful planning of the timing of my medications, and the energy expended to position my body to minimize any tremor or dyskinesia, was exhausting.
I was angry that at a time when life was so busy and exciting, I had to deal with this diagnosis. I became consumed the disability I was sure I was going to face. Would it put an end to my medical career? What about my plans to travel the world with my husband when we retired? Was I going to be there for my daughters as they journeyed through their life stages? And that's where I stood for a very long time. On the brink of disaster. In fact I spent almost a decade in defiance and avoidance.
But then ultimately things changed. They had to change. I was growing tired of the stress, it worsened my symptoms and it was changing me as a person. Although no one could tell from my happy demeanor, I didn't like the fact that I rarely laughed anymore that I was so intent on distracting myself with busyness that I was exhausting myself with constant activity.
I was at a crossroads. My future for now included this chronic illness but my life experience I began to realize would be very different depending on how I decided to face this challenge. This realization came gradually. There wasn't one defining moment; it was a natural evolution, a necessary change. My shift in perspective can be best summarized by a quote from Dr. Viktor Frankl (Austrian neurologist, psychiatrist and author of "Man's Search for Meaning") who said "Everything can be taken from a man but...the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way."
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Rare Diseases
I began to understand that although the diagnosis was simply not within my control, how I faced this challenge was ultimately mine to determine, moving me from a position of helplessness to one of true empowerment. This realization didn't change my symptoms. It didn't lessen my disability. It didn't soothe the physical pain. But what that change in perspective did, was to allow me to choose not be defined by my disease, to thrive despite its limitations and to concentrate on those variables that I do have control over. This fundamental paradigm shift did not come easy, nor quickly in my case but once I was ready to accept my diagnosis, it did come quite naturally.
Now I try to live my life with an optimistic outlook. After all, I couldn't have made it successfully through the past 15 years watching as my body has deteriorated, my health falter and my life change forever by focusing on the negative. I know that my life experience depends on how I approach this challenge and it is for this reason that I try and look at the blessings I have been given instead of all that has been taken away. And for the most part, I approach each day with a feeling of gratitude and optimism but I'm only human and I too have my down days - days when this journey seems too difficult to navigate, times when I feel defeated.
Thankfully those days are far and few between and I've learned to recognize them for what they are, accept them as being a normal part of this experience and allow them to run their course and bring my focus back to the positive. After all no one knows what life will bring and at some point you have to abandon your fear of the future in order to begin living your present.