Did you know that I suffer from one of the most agonizing nerve pain conditions on the pain index?
Read my story below about my experience on ABC’s The Taste and hopefully you get inspired no matter what disability you may have, including sciatic nerve pain and diabetic nerve pain.
Two years ago, after a surgery to repair my right hand I was diagnosed with CRPS, also known as RSD it is the most painful nerve pain disease on the McGill Index. Daily nerve pain from CRPS is greater than natural child birth, yet thousands of people suffer from this invisible disease daily.
The disease started in my right hand and in the last two years has spread to my entire right arm, lower back and both right and left legs. I’m lucky in that the physical attributes of my CRPS are minimal. Often people’s joints become extremely swollen and purple, I’m lucky in that the swelling has not been an issue for me. The scars on my wrist often turn purple, but that’s nothing a pretty bracelet can’t cover.
This horrible disease claims more lives to suicide than any other cause of death, and why is that? First the pain is excruciating, it feels as though you’re sitting in an electric chair with bolts of electricity running through the infected areas. More importantly I believe so many patients give up due to lack of support. Lack of support from their families, friends and community.
Because it’s an invisible disease CRPS patients are often criticized by those who don’t “see” their pain. I used to have a handicap placard for the days my legs were exceptionally bad, but I stopped using it after a woman came up to me and my daughter after parking in a handicap spot, she cursed at me asking why I would steal or borrow my grandmother’s handicap placard. This in front of my child! The woman was horrible and since then I would rather suffer in silence or skip leaving the house all together on painful days. Imagine what these words would do to someone on the brink of giving up.
Even family members who have known of my disease for two years forget about it and ask me to explain all over again at family holidays. However I’m extremely lucky, I have an amazing support system in my immediate family and close friends. Without them I would have lost hope long ago.
The Taste on ABC
So needless to say when I applied for The Taste I had no intentions of sharing my disease with my cast mates, I was worried that they would not believe me or assume I was looking for special treatment. I spoke with my doctor and got clearance to compete and went through a round of procedures called nerve blocks to numb the infected grouping of nerves in my right arm and left leg so that I could compete, hopefully without pain.
I assumed, after being a fan of The Taste season 1 that we would cook for a couple hours a day, something I was already able to do at home. So with high hopes I invested in some comfortable flats and packed my bags, eager to show even a CRPS Pain Warrior could achieve her dreams and I jumped on the train to Hollywood.
When I arrived on set the first day I was feeling good, my nerve blocks were doing their magic and I was excited to get in front of the camera. I walked on the beautiful set and was so in awe of all the lights, cameras and cooking stations I was excited and ready to get the party started.
Then we started what the entertainment industry calls “hurry up and wait”. What I thought would be a single two hour cooking day became three 18 hour days, far more than what I was used to. Lots of standing around on concrete and sitting in cold metal chairs. My body quickly started to give out.
While other contestants went out for dinner and dancing at night and on days off, I was holed up in my room taking long soothing baths and sleeping. The pain immediately started messing with my head, when you have level 10 pain your thoughts get fuzzy and concentrating can be difficult.
I knew I was in trouble when I nearly collapsed on stage during the second show. While Jay and I were facing the music and getting our red stars last week I was doing everything in my power to keep my legs working underneath me. Even slumping down to the ground in between takes. I didn’t want the other contestants to know so I just blamed it on my “bad back”.
I remember waking up the morning of the first day shooting for episode 3, I called my husband and told him I couldn’t do much more. I put in a call to my doctor and arranged an emergency nerve block procedure for two days later when I knew I would have a day off. Yes I said it, I was going to use my day off to get surgery so I could keep competing!
I told my husband if it came to being eliminated and it was between me and one of my team mates I would try to bow out gracefully, but only if it was one of my team members. I knew they all were physically up to the challenge, all I cared about at this time was that Team Marcus would win, and if I could sit on the bench and cheer them on that was good enough for me.
So when Sarah’s amazing dish was somehow picked as the least favorite in the team challenge, I knew it was time for me to go home. Forced to choose a person to go home my team members all said my name, I was relieved. I wanted to bow out but I did not want to “give up” so agreeing with them was the easiest thing to do. I would not fight to stay and take a spot away from one of my team members who could compete. For me it was a no brainier, I couldn’t take one of their spots for my own gain, in this moment it was all about the team!
Gasps were heard when I agreed that I should go home, and my producer Sean was actually mad at me for not fighting harder to stay. I assured him I had my reasons and would share them in my exit interview. No one knew, not the producers, director or even my mentor Marcus knew I had been suffering in level 10 pain for 3 weeks on set.
When we sat down to do the interview I opened up about my disease, I had not shared it in the beginning because I didn’t want to be treated differently, but most of all I did not want it to come off as an “excuse”. I wanted to inspire other CRPS/RSD patients. I shared my story and quickly noticed that the gentleman in charge of sound was silently crying, he later told me that a family member of his has CRPS and what an inspiration this will be to her.
When I cleaned out my locker I left notes to all my team, telling them that I adored them and that there were no hard feelings, they still did not know about my disease. I told them to meet me in my hotel room for a champagne toast, I had something important to tell them.
When the Green Team met for one last time that night I told them my story and told them I could no longer go on, even with the emergency procedure scheduled for later that week. The long hours were too much for my body to handle. They all felt awful for naming me to go home but I assured them it was all for the best. I told them how proud I was to be in their company and to be on their team and that I would be cheering them on.
So don’t be sad that I’m going home this week, I’m proud of what I accomplished and I hope to inspire CRPS/RSD Pain Warriors to stop saying “I can’t” and start saying “I’ll try” because it’s far better to try and fail than to never try at all… And keep watching The Taste, you may see me again later this season!
You should never let challenges get in the way of your dreams! –
Nerve Pain and CRPS Awareness
There’s lots more in the works for this Pain Warrior, I refuse to let this disease define me! I will define myself and use my disease to inspire others. No matter your disability you can reach for the stars, don’t ever let your nerve pain or disability stop you from trying to achieve your dreams. My dreams of a cooking show are not lost, I now know my limits and will keep pushing until my dreams are a reality! Watch out Hollywood, I’ll be back soon!