The passage above is from a song called “Coming Out of the Dark” by Gloria Estefan, and I couldn’t think of a better way of expressing the path my life has taken these days. The last time I was able to contribute an essay to, what has sort of become, my online journal the summer was just beginning and all that I felt was shut out....shut out from a world I felt I had no chance of ever taking part in...Oh what a difference a year makes.

I wrote awhile back that I had wanted a Selective Dorsal Rhizotomy For Spastic Cerebral Palsy and Factsheet: Selective Dorsal Rhizotomy to help improve my CP. A lot of people called me crazy for wanting, what is sometimes referred to as, “radical spinal surgery” which carries a serious risk of permanent paralysis. However, I felt that in order for me to be able to accept my Cerebral Palsy and to like the person I am becoming, I had to do everything in my power to improve my situation. It was a major disappointment for all, when we flew to St. Louis last April for a Rhizotomy consult and were told that due to back pain Dr. Park did not think I was a good candidate at the time. That “NO” felt like someone was cutting off my air supply..killing every path I had to my dreams!

Then came the miracle....Back in Hawaii I went to a chiropractor who does special work with the “Atlas bone” (Bone at the very top of your spine which cradles your skull) and he not only fixed my lower back problems but my latest X-rays show absolutely no sign of Scoliosis! Yeahhh! We moved to St. Louis right after camp in late August!

The Rhizotomy was performed on October 22, 1998 and I will forever refer to it as the day that changed my life! First off let me just tell you that you shouldn’t let anyone try to sugar coat how much pain this surgery really involves if you are thinking about it...When I woke up in recovery ICU I thought I was going to die. Those first 4 days post-op, even with a PCA pump to dispense pain meds, were the most painful days of my life...it hurt to move, breath cough, go to the bathroom etc. but it was sooo worth it! On the 4th day post op I stood up for the first time straighter then I ever have in my life with my weight balanced perfectly. I never really realized how tall I was, it felt like I was a giant or something (probably because I was on serious medication ) I remember looking at my therapist, Nicole, and saying “I can’t be doing this.” The weird thing was that I couldn’t even feel my feet, it was like they were asleep, and here I was standing like a “normal.” person.

I thought Nicole was bonkers when she told me that I had to take a step. I could have stood there forever just marveling at how tall and straight I was. when I lifted my leg up I didn’t even have to concentrate on it, it just came up and I was still straight. I never knew that someone could move their legs without much thought, before surgery it was like my feet were glued to the floor, like they weighed a thousand pounds whenever I tried to move. Boy did I cry, partly because my back hurt so much and I felt dizzy but mostly because I could MOVE!

Day 5 post-op was the day I really saw how fast my dream were becoming a reality. Melissa, my second PT, stood me up in a walker, gait belt on my waist, and told me to walk. I still couldn’t feel my feet and I was putting a ton of weight on my arms, mostly out of fear, but I started walking. Now there is no way to really describe this to you... I was straight and tall hips moved forward and my legs moved too, right left right left, no snapping back and popping my hamstrings, no hip popping as a I moved forward, no ankles buckling underneath me and turning outward. I WAS really walking.

Now I don’t mean to make this sound like a cake walk or anything...I mean I didn’t even make it half way down the hall that first day. I did therapy twice a day in the hospital for 2 weeks but by the time I left I was up on crutches and still really walking. I cried so hard leaving the hospital because a part of me thought that if I left the “miracle place” it was somehow all going to disappear and I would go back to all my old patterns but of course I didn’t.

Over the past 4 1/2 months I have watched myself in amazement and sometimes I am even afraid to think about all the improvement for fear of jinxing it or making it disappear, silly huh? I can walk sideways on a treadmill, walk up stairs, my measurements as far as my hamstrings, heelcords, and hips, are concerned are the best of my life. I still walk straight and tall and I have even stopped using my crutches in therapy and at home when my mom is around. You know what the best part is though? IT DOESN’T HURT TO WALK, meaning no hip popping, hamstring popping, backaches, and nothing buckles when I walk. It is amazing! I kick balls and have jumped on a trampoline and even walk backwards and they said I would never walk independently HA! Now granted none of this stuff is perfected yet and I have to go to therapy 5 days a week and work my butt off but I have hope again and I will keep trying especially since there is a good chance of me kicking my AFO’s out the door. You know I wonder if babies feel the same pleasure when they learn to do all this stuff!

Even as I look back on what I wrote just now I can’t get myself to fully believe that I am talking about me. It is weird ya know? I didn’t crawl till I was three or even stand and walk with a walker till age 8. They told my mom when I was little that if I didn’t walk by age 7 it would never happen. They also told her that I would never be able to sit up or fully express myself either . Then of course there is my favorite prediction...A year after my 2nd set of surgeries in November of 1994 the doctor looked at me straight in the face and told me to go home and accept my limitations because there was nothing else they could do for me! Now mind you that this was said in a prestigious hospital, in New York, by a doctor who was a Rhodes Scholar and revered by all. He never even mentioned Conductive Education, Balfocen pills or the pump, Botox injections, HBO therapy, and especially not the Rhizotomy! I had to learn through the Internet and my own research.

It is most definitely my conclusion that the medical profession runs on its own time scale and by their own rule book. By age 13 I was walking with my knees practically on the floor, ankles buckled, and on the sides of my feet, my back was arched and it got so tiring to lift my legs that I spent 90% of my time in my wheelchair. I couldn’t crawl anymore, sit straight legged or Indian style, and I fell over if you blew on me. What did the doctor do? Cut my therapy to once a week and tell me to go home and live my life. Even last Friday when I walked into my rehab appointment a doctor took one look at my ankle rotation and foot movement and said that I should not be walking, I didn’t meet the general criteria. Well you know what they could have stood there amazed for the rest of their lives and I AM STILL WALKING.

The most important lesson I have learned from all this, is to never pay attention to anyone else’s time frames and expectations. I will forever be grateful to Nicole and Melissa for helping me while I was in the hospital to gain my confidence and determination again and for helping me walk; and I will always be grateful to Beckie and Julie and Melanie and all the people at St. Louis Children’s that have seen potential in me and let me go after it. (I hope that doesn’t sound like an advertisement for the hospital ) But, even with all the help I am getting now, it is important to remember that I found this opportunity because I didn’t give up and I knew that there was more for me and because I am really good at talking my mom into things

It may have only been spinal surgery but, somehow I think I have found who I want to be in all of this. I know for sure now that my website and the information that I put out could give someone else hope and that is important. I know that I want to continue to help people by sharing my experiences with them, and everyday I learn a little more that even though my Cerebral Palsy will never go away I am going to be “OK”....of course those doctors might have other opinions.

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