Stories of Hope
It’s not everyday a doctor sits you down in a quiet, private room and informs you that you have an incurable, relapsing autoimmune disease that has the potential to paralyze from the waste down, cause total blindness and possible respiratory failure. Of course, my doctor used gentler phrasing, but that is precisely what happened to me at the tender age of 24.
My story begins, believe or not, in the middle of the remote mountains of Tibet. After graduating from college, I decided to “find myself” on a volunteer trip to China and Tibet. I had been in Tibet for about a month when my health began to take a very serious turn for the worst. I remember every detail so clearly. Ironically, I was swimming in a hot spring the Dali Llama used to retreat to for healing. I squinted up at the sun and noticed the vision in my left eye was slowly growing black, like a curtain lowering. The pain was so intense; I could barely move my eyeball.
At first, I blamed the vision loss on the high altitude of Tibet and my bad allergies, but once I arrived back at my guesthouse in Lhasa, my left eye had become almost completely blind and the pain was unbearable. So, after teary good-byes to my travel companions and a few plane flights, I ended up on a train, with a missionary I didn’t know, racing to a hospital in Hong Kong. I had never really been seriously ill before or in a hospital for that matter. Once at the hospital, all the tests began MRIs, CT Scans, blood work, and my personal favorite, the spinal tap. Once the results were in, my neurologist explained to me that I had idiopathic optic neuritis. In plain terms, that meant no one had any idea why I was blind in one eye. So, after a week of intravenous steroid treatment, I had regained some vision and assumed I would be fine. One day out of the hospital and I was back in again with spinal tap migraines and a random bout of pancreatitis due to the steroids. Finally, after another week in Hong Kong, I was on my way back to California and two very frantic parents.
Over the next few months my vision returned and we all relaxed a little, blaming the optic neuritis on the harsh conditions of Tibet. Sadly, we were mistaken. In March of 2003, about 6 months after my first bout with optic neuritis in my left eye, I began losing the vision in my right eye. I was heartbroken and went in to what I term “medical denial.” At the time, I was dancing in a musical, I had just been crowned Miss Bakersfield and was headed to Miss California and I was preparing for graduate studies in journalism at USC. I didn’t have time for health issues. Stupidly, I ignored the vision loss. In my mind, it was only optic neuritis again and the vision would come back like it did last time. But, it didn’t come back.
In April, I lost my left eye again. Simultaneously, I began loosing the feeling and use of my legs and my skin felt like it was being scratched and burned. My spine ached and I was exhausted. This all occurred in only one weeks time. The speed at which my disease progressed was unbelievable. I went to a local neurologist. Once again, more tests, after which I finally received my diagnosis – Devic’s Syndrome or neuromyelitis optica. Basically, Devic’s consists of relapsing bouts of optic neuritis and transverse myelitis. The disease in autoimmune and demyelinating, meaning my own body is attacking the myelin sheath that protects the nerves of my central nervous system. The lesions that occur on my spinal cord during a relapse cause the blindness and paralysis.
My world crashed. Too many thoughts flooded my mind. I couldn’t process anything. My mom just cried. In one week, I was robbed of my life and independence, in the traditional sense at least. A doctor at the Mayo clinic in Arizona put me on a treatment plan. Everyday I take a pharmacy’s worth of drugs: Immunosuppressants (chemo drugs), prednisone, provigil and the list goes on. I never imagined my life would revolve around what time I had to take my pills. I thought that was just how my grandparents lived.
It’s June of 2004 now, and thanks to my drugs, I have been in remission for a little over a year. My legs regained all feeling, but I only regained vision in one eye. My right eye is permanently damaged and completely blind. But, I feel like I came out on the lucky side of things. If I have another relapse, I may not recover as well. My right eye serves as a daily reminder to me to cherish and preserve my health as much as possible.
For the last year I have worked for the Muscular Dystrophy Association and this fall, I plan to attend graduate school at UCLA to study Public Health. In a strange way, my disease has put me in touch with my true passion, which is health advocacy. I also plan on going to Miss California with the hopes of promoting stem cell research. I believe that, if for no other reason, my disease presented itself in my life at such a young age because I was meant to use it to help those unable to advocate for themselves.
Like so many other Americans and, for that matter, human beings, I too could possibly be cured from the life saving potential of stem cell research. At no other time in history has such a promising medical advance been so within our reach. Autoimmune conditions comprise of just a few of the diseases that can potentially be cured by stem cells. Every time I allow myself to think of the possibility of a cure in my lifetime, I feel both excited and nauseous because my own government is trying to rob me and millions of Americans of our cures. To me, stem cell research is not about destroying life, but rather preserving life already in existence.
I want the chance to live my life without being dependent on toxic drugs that cause cancer and infertility. I want to no longer rely on expensive medicine to relieve me of the fatigue that attacks my body daily. I want to stop being scared of exposure to illness because of my dangerously suppressed immune system. I want the bruises covering my body that result from the anemic side effects of my drugs, to heal. I don’t want to be paralyzed and I am terrified of loosing my other eye. But, most of all, I want to see unnecessary suffering end. Suffering endured by those who live with chronic diseases and suffering endured by their caregivers and families. We must take it upon ourselves to find treatments and cures to end this unnecessary suffering. Please, join me in support of the California Stem Cell Research and Cures Initiative, the peoples ballot initiative to save lives and end suffering.