I received this story while I was struggling to find an interesting topic for this issue of the newsletter. We have been doing a lot of traveling visiting many members across the country and discovered that many of our members have courageous and interesting stories. I invited a few of them to write and send me an article about how they live with their mitochondrial disease. This first story is from a special friend and very courageous mitochondrial warrior, Rachael Pipp.
Dr. Wayne Dyer said, “When you change the way you look at things the things you look at change!” Rachael is living proof.
by Rachael Pipp
My eyes aren’t typical seeing eyes anymore. I truly miss my vision. It’s been over two years now, but behind these beautiful blind eyes I can still remember and imagine what the world looks like. I have memorized all the colors of the rainbow and colors of my tie dye shirts that I made for my UMDF EFL Walk Teams; I can still picture all those beautiful things in my mind.
Like most of you I sleep, I eat, and then I repeat. Unlike most of you I don’t work, not because I don’t want to but because I can’t. I have mitochondrial disease and so I have good days and I have bad days. I had to learn to listen to my body, which I’m much better at now than I used to be. It took a long while for me to learn that I am not like others. I cannot overdo activities or refuse to take naps. I finally realized why I would feel sick for days at a time and how normal activities caused me to crash. I have now learned to embrace my naps and how to conserve and make use of my energy, saving it when I need it the most. I am learning how to control the disease and how to be part of the CURE.
I’ve always been an artist and I miss creating all my art. I can still make some art by feel, but it’s just not the same when I don’t get to see the process or the finished piece. I want to see the beautiful bright colors and not just imagine them; you can’t feel colors. I use to love to paint colorful character pictures and make purses, wallets and flower pens out of colored Duck Tape. I even made a Duck Tape Mito Tie for UMDF CEO Chuck Mohan. Sometimes I can still get a glimpse of colors and shadows and sometimes I can even see XXLarge letters out of the corners of my eye. I really miss seeing everything, but especially I miss the faces of all the people I love.
Since losing my vision I can’t spend as much time on my art, so I had to think of something else to keep me busy and my recumbent bike really helps me do that. Riding takes time and energy and then I need more time and rest to re-energize. I really enjoy listening to music and books on tape while I ride and when I ride I don’t think about my mito disease. I pretend I am riding outside enjoying the fresh air and seeing the trees and sky. The exercise really makes me feel energized and when I’m energized I feel healthy and when I feel healthy I am happy. I drink lots of Normalyte, Gatorade and water while riding. I keep my Mitochondria activated by trying to ride 6 miles almost every day. Riding makes me feel free!
Before I start my bike ride, I need to prepare more than most riders who do not have mitochondria disease. I have to have a good night’s sleep, then I need my breakfast which is usually Cocoa Wheats with peanut butter, so yummy. Then it’s time for my medicines, especially my POTS ones so my heart doesn’t race so much, then come my supplements and then a good long nap to digest it all. When I wake up and if I feel up to it, I hop on my bike for a 6 mile ride. It takes me about an hour to ride 6 miles and I can’t do it every day, though I try. Some days I record my miles on the Charity Miles App because my goal is to add enough of them to help get UMDF as one of the charities listed to ride for and get listed on the Charity Miles App. Helping others helps me control my disease and helps me be part of the CURE.
After I ride, I need more food, usually a packet of Real Foods Blends that I take in my G-tube. My favorite is the beef, potatoes, peas and pineapple. Then, after all that, I take my shower and another nap! When I wake up it’s almost dinner time! Even though riding wears me out, it also refreshes me and gets my mind off my disease and makes me feel free; it puts me in control.
My comfy bed is my happy place where I dream and wish I could see. I dream and hope for a research grant about stem cells that could replace my optic nerves so I can see again in my lifetime. I have a fear that I may never see again and I continue to struggle with my sadness about this from time to time. Sometimes I wonder, “Why me, why can’t I see like my other friends.” I think maybe I was meant not to see, but I don’t know, maybe this disease is just unfair. No, not maybe, mitochondrial disease is unfair. It robs you of different parts of your body and I don’t like navigating this beautiful world through this dark tunnel.
I wonder if having mitochondrial disease and losing my vision has made me stronger. I do know it makes me work harder and when I work hard I really feel optimistic in spite of it all. I still try to live life to the fullest and make a difference for all of us with mito. I do my best to keep myself pumped up and I advocate for treatments and cures. It motivates me get out there and raise more money for UMDF. It’s the best thing I can do for myself and others and it helps me control the disease and be part of the CURE and not a victim.
When I’m in the hospital I do my best to be brave. I try not to be scared and even if I am, I just tough it out as best I can because I know the doctors and nurses are there to help me. Sometimes you have to respectfully advocate for what you or your family knows you need. Sometimes the nurses and doctors don’t understand your Mitochondrial Disease or certain things about yourself personally that you know will help. The doctors and nurses think I am brave and always tell me that my smile lights up the room and brightens their day. Sometimes you just have to smile. Sometimes the smile is the best medicine. The smile helps me control the disease.
I try to always say please and thank you to all my caregivers who help me at home, and especially my mom. I have the disease but my mom is also affected by it so I must always try to be grateful, cooperative and flexible about what needs to be done and I find that they are cooperative and flexible with me in return. I guess it’s important for the patient to have a good bedside manner as well as the doctors and nurses and all those that care for us.
My mitochondrial disease is showing me that attitude is everything and makes a huge difference helping me to look at what I can do rather than what I cannot do. Smiling and laughing and appreciating others is important. Sometimes I like to give little surprises to these special people and sometimes they do the same for me. I’m like Olaf, I like to give and receive warm hugs and so do most of the people I work with.
Everyone likes to know they are appreciated and important and being polite and courteous are two things that mitochondrial disease does not take away. I may not be able to see, but I know when you are smiling. And when you smile you help me control my disease and help me stay part of the CURE!