ACCEPTANCE

The year was 1998. I was 29, married with two healthy daughters, and was working at my dream job. My husband was just finishing up his training and ready to launch his career, and it was an exciting time for both of us.

We were in the process of buying a house, juggling two jobs, and raising children when one day I noticed my right leg tightening and cramping while my toes curled downward. In the months that followed, I started having issues with my balance as well. I attributed these problems to the fatigue that accompanies working while raising a family. They were small, annoying inconveniences and I really didn’t think anything of them.

Roughly one year later, I fell in my garage while holding my baby. Thankfully, neither of us was injured and I promptly went into the house and scheduled an appointment with a neurologist.

After completing a neurological exam on me, she told me that she thought I had Young-Onset Parkinson’s. Wait, what?! Parkinson’s hadn’t even been on my radar as a potential diagnosis, and to be honest, I knew next to nothing about the disease. I left the office shocked, confused, and frightened. Her words --Young-Onset Parkinson’s -- continued to echo through my head as I made my way back home.

The neurologist referred me to a movement disorder specialist, and in a flash, all sorts of tests were being run, and the specialists were discussing other illnesses such as Wilson’s Disease along with Parkinson’s. I had never heard of Wilson’s and now knew Parkinson’s was a diagnosis I did not want to entertain. How could I possibly have Parkinson’s anyway? I had just turned 29 when I first noticed symptoms and didn’t even have a tremor. I knew of no one in my family with any neurologic disease. My life felt surreal. In the midst of all this testing, I found out I was pregnant with twins, which simultaneously made me both overjoyed and completely terrified.

After the twins were born, I continued life as a working mom. My neurologic problems persisted, and at that time, there was no definitive test for Parkinson’s disease (PD). Because my symptoms didn’t fit those of classic Parkinson’s, no one seemed certain what exactly to call my illness, which proved to be the start of a long period of frustration and angst for me. I began taking carbidopa-levodopa and did quite well for a number of years, such that it seemed possible that I might not have PD at all. Denial became my preferred approach to cope with my new reality.

About the time I thought I had a handle on my neurologic problems, my bones started to break. Another barrage of testing ensued, but a definitive diagnosis for this new, unrelated health concern remained elusive as well.

I felt like I was in a black hole with no way out. Life was a nightmare in the form of a tornado spinning around me and I couldn’t crawl out of it. I was angry but had no one to whom I could direct my anger. It was no one’s fault that I was sick. There was no family history. My husband and children certainly hadn’t caused it.

And though often surrounded by people who helped me both physically and emotionally, I felt completely powerless and alone. No one could feel the sheer terror I did with each new test that was run, or when I broke another bone, or when my neuro meds had to be adjusted. No one could hold my hand and explain what might lie ahead without a definitive diagnosis. No one could tell me it was going to be okay, and I knew that. Why couldn’t I get the old me back when I so desperately wanted her in some way, shape, or form? How I longed for the old happy-go-lucky me who didn’t live each day paralyzed by fear.

I began to experience many difficult dark emotions and became quite depressed. I had hit rock bottom and needed help to take care of my daughters. I couldn’t work and contribute to household expenses, leaving my husband overloaded and exhausted. The girls had a sitter they adored. I felt inadequate in every aspect of my life and began questioning my value within the family. I found myself shrouded in complete hopelessness. This was certainly not the life my husband and I had envisioned, and I was racked with guilt.

I sat down with my Parkinson’s doctor and expressed my frustrations in being unable to find a definitive diagnosis and “fix” my problems. He reminded me that many diseases with names are only managed, not cured. From this conversation emerged a tiny glimmer of hope, a small ray that I could grab hold of and focus on to pull myself up out of the darkness. I listened, and then started to change my expectations. I could live with managing these medical problems despite not having a name or cause for them. I also realized that many people have far worse problems, which sparked a newfound appreciation for my medications that were enabling me to walk, work, and take care of my kids. When it came right down to it that was the most important consideration for me.

I finally decided to start setting small goals for myself. Be here to see my youngest start preschool and then kindergarten. Be here to help my eldest through high school. As I reached each goal, I became more accepting of my illness and less distressed about it’s inconsistent and erratic nature.

Through it all, I have grown so much as a human being. Several words embody my new approach to life. Empathy. I no longer prejudge a situation and wait to hear both sides. Listening. I listen to my husband and daughters. I have tried to ingrain that no matter how insurmountable a problem may seem, I will always listen and do my best to help find a solution. Optimism. Wow! Modern medicine provides me with medications that help me to lead a relatively normal life. I’m grateful for what I have, because it is so much more than most. I also believe that someday my genome will be mapped and help determine the underlying problem. Flexibility. There are multiple ways to get things done. Understanding that some days won’t go as expected. When that happens, I accept the situation and move on. Priorities. If the girls want to play a board game or do something with me, the laundry can wait. For all I know, my illness could start progressing tomorrow, so I try to live each day to the best of my abilities. Acceptance. The old me is gone and this is how I am today – a reality that I now acknowledge I cannot change. Appreciation. No matter how difficult my day has been, if my husband and daughters are safe in our house at the end of a day, it’s been a good day.

I believe everything happens for a reason, though it may take decades for that reason to become apparent. I wish I could understand the origin of my medical problems and what purpose they serve. What I do know already, though, is that my health issues have led me to some incredible doctors, whose paths I would not have otherwise crossed. I credit all of the time and effort my doctors, family, friends, and community have invested to help me get to where I am today. For that, I am eternally grateful.

My PD diagnosis was ultimately confirmed with an abnormal DAT scan and genetic testing several years ago. Having that portion of the puzzle fall into place has brought some closure to the fear of the unknown. At times, the past 22 years have felt like I was riding a roller coaster while blindfolded, with absolutely no idea when the falls would come and when things would level out. I don’t expect that to change, but I’m now better equipped to navigate the unpredictable path associated with Parkinson’s.

I would never wish a Parkinson’s diagnosis on anyone. Being told you have a chronic, progressive illness elicits a spectrum of emotions, many of which are hard to even understand, let alone handle. Each person’s experiences and reactions are different, but I have learned that circumstances determine your priorities and priorities then determine your short-term and long-term goals. Accepting a Parkinson’s diagnosis is a process. Some people can come to acceptance in a relatively short amount of time, whereas I took several years and made many mistakes along the way. But your feelings are your truth, and no one can – or should -- dispute that. We each own our emotions, and although at times, sitting with and processing those emotions can be extremely challenging, doing so allows us to heal, so that we can, in turn, help someone else who is just embarking on this same difficult journey.