My faith in Deep Brain Stimulation has never left me in the midst of bewilderment. Last year, I spoke about my dreams for my upcoming deep brain stimulation or DBS surgery and my hope for it to be my home run in kicking kernicterus on its butt. I live with kernicterus, the brain damage caused by newborn jaundice that caused my cerebral palsy. I also said that even if DBS didn’t work, that I’d be fine, because of my outlook on life. I’m pretty positive and see the world as a glass half full not half empty.
Well, DBS did not work. Last spring, I went through 2 long surgeries and 3 weeks after the second one discovered that I had a staph infection. By August, the deep brain stimulation wires to my damaged basal ganglia deep in my brain and stimulator in my chest were gone because my war with the staph bug couldn’t be won.
What is hard for me, is that it had been working. People could understand my voice. I could make a peace sign with my fingers. I could type better on my computer. And then it was gone. I felt like crap. It’s exhausting when life doesn’t work how you had dreamed. How do you hold onto faith and hope in the midst of bewilderment?
I believe that hope lives in me because I have faith in myself and in other people and in medical advances that may make my life a little easier someday. Last year, DBS failed me. I am not going to give up though. I’m going to try it again, because it was working.
When you hope, you can do hard things like fight an infection and stuff. I have faith that I can stay strong no matter what happens, and that for those moments when I need extra support and love to get me through the tough times, that my friends and family are there to hold me up. Because of that, I can do amazing, scary things like go through surgery that is risky but could also hold a lot of hope for me.
You may think I’m crazy, but we have set the wheels in motion for going through it again this summer – two more long surgeries and the hope of a little more control over my uncontrollable movement. The doctors are going to do everything they can to prevent infection but there are no guarantees. There never are. A life with guarantees would be boring. I hope for a better result this time. I have faith that you will all be there to hold me, and my family in love even in the midst of more bewilderment and uncertainty.
So, what do you take away from this? That some people deal with a lot of heavy stuff? Tears? Inspiration? Pity or feeling sorry for me? I don’t want pity or people feeling sorry for me – I truly am fine and disability is just part of normal – but it can be tough and that’s why I share my true story. What I want for you to take away is that maybe my story can help you deal with the heavy stuff you may be facing – that you’ll be able to hold onto your own faith in the midst of your own bewilderment. This is all that any of us can try to do.
Thank you and hold onto your brave!
Originally presented in February 2015 at WBUUC Youth Service, posted June 29th, 2016