In my time at the Foundation I have had the honor of compiling & sharing your stories of unwavering strength & resilience in your personal journeys. If it’s okay – today I’d like to share mine with you.
How do you measure the quality of your life? Is it in the experiences? Your monetary value or accumulation of acquaintances? For me, for twenty-eight years, it was something I never put any weight on. I assumed that at a young age, with a steady income, a wonderful partner & the ability to vacation twice a year; that my life was on track. I never felt a lack, a need, or a want for much more…until it was all taken from me.
It started with a weakness in my knees. I crouched to the ground in a store to pick an item off of a shelf and realized I couldn’t get back up. My legs that once carried me throughout my short life with resilience now felt like they were made of lead that was constantly wading through waist deep mud. My hands could no longer grip my pen at work and my ever-present exhaustion clouded my once sharp mind. I was becoming a person I didn’t recognize. I slowly wasted away. Seventeen pounds from my small frame. My eyes dark and sunken. My inner light extinguished.
I left a job that I was good at but never loved. It was hard but necessary. I always valued my work and my ambitions and now I had nothing but uncertainty. The days passed from my bed. The sun would rise to greet me, but I kept the blinds drawn. It would sink at night as I was none the wiser. The leaves on the trees turned into brilliant shades of red and orange to give their final goodbye before the winter came and I, I didn’t notice.
I learned that medical school must teach doctors to pull up a chair close to you when bad news is in your chart. I have had my hand literally held by many physicians. Eventually I no longer felt hot tears on my cheeks as I slowly shuffled past the waiting room after my appointments in which I was told to expect a lifetime confined to a wheelchair if I survived. As many have in this journey I was told I was either exhibiting symptoms of MS or ALS; Both devastating options. I became completely numb. At newly 28 years old I was faced with the reality that the best years of my life had passed by me at lightening pace. I mourned it. I had no idea what my life had in store for me if there would be anything to even fight for.
I was unable to function on my own anymore. One of the most vivid, dark days for me was when I had to drag myself by my arms from the bed into the restroom and back; lifting my legs manually with my weakened arms back into the bed that had become my closest friend. I was finally hospitalized in December of 2013 after my primary doctor and my neurologist petitioned my insurance to have me admitted. “A healthy 28 year old who can’t walk?? What kind of quality of life is this? She needs immediate help I will not leave until you okay this!” my doctor firmly announced on the phone while I waited, exhausted in every sense. She was successful and I cannot thank her enough.
In the ER my neurologist met me and described what was next – a week long IVIG treatment. An MRI of my spine did not show any lesions that would be indicative of MS, so if I showed any improvement to this treatment ALS would be ruled out. I didn’t ask many questions at all, I just asked to sign my consent and start immediately. As a person who needs to know everything, I didn’t care about the how or the why I just wanted anything at all to work. Five days passed and I squeezed my doctor’s hand just a little tighter than before. Sheer delight mixed with relief washed over her face. It was working. I left the hospital just before the ball dropped on New Year’s Eve. It was truly symbolic. A new day, and the second chapter of a long journey.
I would be lying if I said it was easy from there on. Painful therapies, IV’s, bloodwork, nurses in & out of my home. I dug deeper into an inner strength I never even knew I possessed. I was eventually diagnosed with CIDP and things slowly started to come together for me. When faced with the possibility of having a fatal illness, a chronic one feels oddly less depressing. The days still passed but I slowly started to appreciate the trees for their leaves again. I gradually rose from my bed and entered the world again with my trusted cane. I stopped letting fear and embarrassment control me or else I knew I would never, ever improve.
From that day on I made it my mission to spread that word to everyone living with this disease. I wracked my brain endlessly wondering how my experience could get me there and I was at a loss. On one sweltering day in July my horoscope read ‘your two worlds will collide in the form of a job opportunity’ and on that day I found the Foundation’s listing. Two months later I had my first day back to work in nearly two years.
In my role here at the Foundation I have the opportunity to devote myself to patients just like me. With each new person I meet I have a new, instant friend. We are bound by our experience and rarity, though although we are not a monolith, we are still so very similar. I assure us both at once that we can and will get through this, and we will do it together. CIDP destroyed my life, but in return gave me this new, purposeful one in which each day is truly the greatest gift. Every time my phone rings and someone is relieved to simply speak to me & hear that there is a life lingering beyond the turmoil, I feel like the luckiest person in the world.
This January I was given the opportunity to travel to California to speak on my story as a patient. I stood before 150 eager ears who hung on my every word. I was honored & beyond humbled to be a voice for so many without one. To be a face instead of a statistic. After thirteen minutes of releasing what I didn’t even know still existed within me, the weight of so many months of pain lifted from my burdened shoulders. I was immediately a survivor – a title I struggled to accept for so long. After the hugs & handshakes I made my way down to the shoreline of the Pacific. A promise I made myself when I was laying in my bed; if I got better & could walk on my own two feet again, that I would see the Pacific Ocean. Full circle – oh how I had arrived at you! Hot tears streamed down my face as I looked out into the infinite beauty, wondering what I can conquer next. Hopefully the sky is the limit.
Tomorrow and every day thereafter I will wake up as a person living with CIDP. How I choose to spend that day is up to me and me alone. I will continue to set small milestones for myself and continue to remember that my end goal is my entire life. The sun rises as I walk on my own two feet to the train every morning and I make sure to appreciate every second of it. It’s not lost on me anymore. Every step I take is for my future, and for the future of all of my new friends living through this. If I never in my life get to run again, I still have those steps to look back on and the ones that will follow to motivate me. I am here. I am surviving. I will live a good life.