the invisible war
I sat in the small medical exam room at a hospital in Boston while the Specialist told me “Well, when you smell a rat it is usually a rat, this Rat is RSD.” Suddenly there I was, speechless, dumbfounded. Years of relentless pain and not knowing what was wrong with my body, to having 3 simple words bring my entire world crashing down around me… Regional Sympathic Dystrophy.
And I cried.
The three letters R S D were heavy around me and I suddenly couldn’t find the air to breathe. I knew those were the three letters I didn’t want to hear. Those three letters were meant for someone else, not me. Didn’t this doctor know I was young?? Didn’t he know that I had spent my entire life ACTIVE! I was living the dream, my dream. I had built a successful, happy and adventurous life in the Caribbean. Didn’t he know I had just learned to kiteboard?
24 hours earlier… in the caribbean
I was sitting in my podiatrist’s office in St Croix, USVI for the third time that month. I told her something was wrong. Really wrong. After 4 years of excruciating pain following a sprained ankle, I could no longer walk and I had been forced into a wheelchair.
I could no longer take showers without the falling
water feeling like daggers being thrown in my feet.
My feet were bright red, almost a purple hue. She went to touch them and my nerves fired the most intense wave of pain before she could even get within 6 inches of my feet. I held my breath and push my eyes closed through the pain and I heard her softly sigh. “ Kelly, you need to leave the island,” she said as she rested her hand back on her lap. At that point we had done all the referrals to the specialists on the island and only gained frustration as everyone either said “This is Plantar Fasciitis” or “There is nothing wrong with you! Your MRI, CT scans and X-rays are fine, this is all in your head”. But, I didn’t understand if this was all in my head, why were my feet so read and swollen?
Maybe this was in my head? Maybe I was imagining the discoloration, the swelling, the pain? Maybe I wanted to be sick? Even though I was a licensed clinical therapist, I was confused and thought, “ Is this me? Am I making myself sick?”
My trusted podiatrist, urged me again, breaking ruminating thoughts of self doubt… “You have to leave, this is bigger than any specialist on the island. If you want, I will meet you at the ER in 2 hours and I will call for an air ambulance to take you to Miami.” I was still in shock. Certainly it couldn’t be that bad! I had a job after all. I had clients who needed to see me this week. I had 2 dogs to take care of. I couldn’t just leave island. In my mind, the responsible thing to do was wait. So I left, in my wheelchair with a prescription for Vicodin and somehow I was able to drive 20 minutes home and literally crawl 100 yards down the path to my cottage. And her words hit me.
I needed to leave. Immediately.
Hours later, I was on a commercial flight to Boston to see a doctor that I had googled “best Podiatrist/surgeon” and was able to be seen immediately due to a cancellation. I was terrified to discover what was destroying my body. As I boarded my flight, being pushed by a flight attendant down the long terminal to the plane, I saw a familiar face. An old friend. A friend who was a pilot. Was he my pilot? Suddenly, I knew I knew this was an Omen, this was the right decision. My first time flying to Boston from San Juan, PR because of a mystery illness and my friend Jeff was there greeting passengers as they got on the plane. I wasn’t alone. After we landed, he carried my luggage and pushed my wheelchair. Another friend from the island happened to also be in Boston and agreed to meet me at the airport. She helped me into her car and helped me settle into my wheelchair accessible room that had been arranged by a caring friend, while I was in transit to the states. Sometimes things aren’t a coincidence. Sometimes the universe gives you exactly what you need. I don’t know how I would have survived this terrifying week without their presence and support.
The Diagnosis: Regional Sympathetic Dystrophy
“But, I just learned to kiteboard.” I told the Specialist. He stared at me, possibly questioning my sanity. “What I mean is, I have to get better. I don’t know what RSD is but I know it is bad. My podiatrist mentioned it once,” I rambled “she said, it was rare and pretty horrible but that I probably didn’t have it”. He went on to share information about the disease while tears streamed down my face.
The next 3 days were a blur of painful tests and incredible teamwork from my medical team. Although I was alone, I felt supported by the doctor’s expertise and kindness as well as support from my friends who were nearby and back home in St. Croix. On the final day, I met with the specialist one more time. “It’s not in your head,” he shared “this is a neurological disease, your nerves are telling your brain there is excruciating pain but there is no injury”. He went on to explain;
“ You have to get up. You have to walk, you can’t stay in this wheelchair, because if you do, you will never walk again. Your attitude determines your fate. You have to work hard. Work through the pain. Physical therapy every day. Don’t stop even when you hurt. Push the pain out of your mind. Mind over matter”.
As I look back on this advice, I know that he meant well. I know that he wanted the best for me. I know he wanted me to get better- to walk and to kiteboard again. But, it wasn’t that simple. RSD was no longer called RSD, it was now known as CRPS (complex regional pain syndrome) and it was still thought to be rare. Very few people are able to go into full remission even with a heart full of optimism and a handful of meds. The medical community now understands that while you shouldn’t stop moving – sometimes it is impossible to fight through the pain because you can cause nerve damage to the limb or area. However, in that moment, I could not have asked for a better doctor. He believed me. This was real and he made sure I got the best care even from 1,740 miles away.
I went home to my island, my beloved job, my dogs and my life that I loved. I stood up and walked through the intense burning pain. I went to physical therapy every day. I walked on the beach to desensitize my feet. I swam. I biked. I pushed through. I wasn’t going to allow this disease to rule my life. I was going to fight. I was going to kiteboard again. That was October 2014.
In the next two months I found that CRPS is rated as the most painful disease in the world. On the McGill Pain scale, it rates above natural childbirth and amputation. In December 2014 I was told that if I didn’t move off the island to better medical support that I would ultimately lose the ability to walk. I didn’t move. Instead, I flew back to Virginia every 6 weeks for injections in my spine to calm the nerves.
I told only a handful of people about my diagnosis but I hid it from almost everyone because I felt ashamed, broken and weak.
Somewhere in those four months, I met a wonderful man and fell in love. Ultimately, I will still say it was the love that I moved back to the states for and not because of the disease. Love was the only thing strong enough to loosen my grip from the life that I built on my island.
I left my friends, family and my therapy practice on St. Croix in late February of 2015. I flew back to Virginia with my two dogs, four checked bags and $518.00 worth of flat rate postal boxes in the mail. As the wheels lifted off the runway on that special island where I had shared laughter, tears and adventures for the last seven years, I felt my heart break. Tears built up behind my Ray Bans and my Golden Retriever Abe, rested his head in my lap as we climbed higher into the clouds. I left a piece of my soul back on the beaches of St. Croix, along with my kite boarding gear.
For the last year, I have fought relentlessly against the invisible war going on inside my body. On my darkest hour I wanted to end this life of pain and torture, but in the end I only found more courage to continue fighting. This is not the life I so carefully crafted in my late twenties. I am not the person I was working so hard to be. I am better. I am a warrior. And this is my story.