When You Look in the Mirror You Will See A Beautiful Face Looking Back at You…
Hi, my name is Diane and this is my Story. My life started out very rough.
My Mom went into labor in 1951, a time when doctors did not get involved with other doctor’s patients… My Mom’s doctor was at a party and had been called. In order to try and delay my birth, a sheet had been tied under my Mom’s belly. A passing doctor was horrified when he saw what was going on and immediately went into action. By this time though, I was a blue baby and had to be delivered with forceps which damaged my right eyelid. This started my tough journey into this world. My right eye had to be taped open and I had to hold my head back in order to see out of it. I went for weekly therapy for my eye for 5 years before I could have surgery. My parents took me to many doctors to see how this could be fixed. Most doctors felt that the eyelid would have to be cut in half and I would have to use eye drops for the rest of my life. My eye would be opened 24 hours a day and would eventually dry out and I would lose my sight in that eye. My parents did not give up! They found a young doctor at Iowa City Hospital who had a new procedure. I was the first one to have this surgery and it was successful.
I was a normal child who had gone through 3 eye surgeries by now. Or I thought I was normal. I spent years of kids making fun of me and tormenting me due to looking different from other kids. I had bucked teeth or that was what they thought back than and wore braces for 6 years. Plus I was a klutz always falling down and getting in trouble in school for not paying attention. So they thought! Well, they were all wrong. Just before going into High School they discovered I had double vision. So, I was not a klutz and I did not have bucked teeth and I was paying attention in school. Again, another surgery on my eyes. Problem solved! Well surgery was a success and no more seeing double. Hooray! Now I was starting High School and by now I had become very withdrawn by all the torment and meanness from other kids. I just barely survived High School. I graduated and was done with school, no college for me. My Mom told me that I had 2 weeks to find a job or I was going to have to go to College. Well, broken and so hurt I did just that. I found a job. I also, for the first time, had friends. I survived and life was good. My Dad had a heart attack when he was only 47. He survived to the doctor’s amazement. He always wanted to retire to Florida. His job made him a position in Florida and that is where we moved in 1975. I found a good job and things were going pretty good for me. Then in 1983 I was having trouble with my jaw and had to go through TMJ surgery which meant 2 years of braces to undo what wearing the braces for 6 years had done. Oh, did I tell you this was caused from having to hold my head back for 5 years before my first eye surgery. So, again, another surgery.
One day I hurt my back on Space Mountain when I was at Disney Land. I started going to a Chiropractor for 2 years. Then in 1990, I was at work one day when Dystonia reared its ugly head. I called my Chiropractor from work and was in so much pain and felt pulling in my neck. He saw me immediately Right off, he told me I had Torticollis and sent me for an MRI. The MRI showed I had a herniated disc. Again, another surgery. The doctor thought once the disc was repaired the Torticollis symptoms would go away. Well, that was wrong. That ugly Dystonia that reared its head in 1990 was still there. I had just lost my Dad in 1985 and in 1986 moved in with my mom. My Mom and I were on the Internet constantly trying to find out as much information as we could on this relentless pain and pulling of the neck. We were reading one day that people with this horrible condition become reclusive. They do not like what they see in the mirror. They see this twisted looking person in the mirror and ask why me? They become reclusive because they do not want people to see this ugly image of themselves. Mom and I sat and looked at each other and I remember thinking at the time why me. I had been through so much my whole life and was, again, going to have to fight another battle. As we looked at each other my Mom said to me, “Do you want to be in this world or out of it”? She has helped me to be a strong person through the years. I decided I would fight this ugly thing that had reared its head. I did not know how big a battle this would be. This would be the biggest battle of my life. The fight was on and the battle begun. This would be a battle I would fight everyday. For those of you out there that have not been touched in some way or do not know how Dystonia can affect someone. I will try to explain. For the most part, you are in pain 24/7. My neck is constantly pulling my head to my right shoulder. There is no way to stop this pulling. It affects everything I do from the moment I get up till the time I go to bed. Things that are simple for someone else are so hard for me. Try brushing your teeth or brushing your hair with your head to your shoulder. I have to put my makeup on by hanging my head because it hurts to let my head just lay on my shoulder. Your daily tasks of eating and drinking are compromised. You just hope it makes it in your mouth and not in your lap. Oh, try holding your head up all day… it’s like holding up a bowling ball. Your arms and hands can get so sore and tired. It is hard to go out to a concert or play. By the time you get home you are so sore and tired. My walking is affected and forget my balance. I do not know how many walls or times I have hurt my elbow. Also, driving is a big problem because it limits your driving ability. Sometimes you have to depend on others to get you places. So you see, just the littlest things you may take for granted are the hardest things for me to do. I could go on and list many other ways Dystonia has changed my life. There is no cure for this nasty condition. I started right away to see a Neurologist. I have Botox injections which is a scary and painful ordeal every 3 months. Then I built up anti-bodies to Botox and could no longer get the injections. I had to rely on over the counter pain medicine. Then after 3 years they came out with Myobloc, another form of Botox, and again I was going every 3 months for these painful injections. Through all of this I stayed strong. I had a very strong Mom who was also fighting her battle with 3 aneurysms that could blow at any time. We both kept each other strong till one day she ended up in the hospital. I remember her telling me to go home to be with my puppy, Joey. They assured us she would come through the surgery and would be home that Monday. So, I went home as she asked and changed her sheets on the bed and cleaned up her room. Then I got a call from the hospital at 8:45PM. She had gone into cardiac arrest. My sister and I rushed to the hospital and she was gone. Now I wanted to give up the battle. The one who kept me strong was gone and I would have to continue the battle on my own. I was not totally alone, I had my sister. She is there when I need her and helps me when she can. She takes me for my Myobloc injections every 3 months because it is so far away and such a hard drive for me. I still miss my Mom but I am continuing to stay strong for that is what she would want for me. Not to give up. I go to my yoga 2 days a week and have a wonderful and such a kind teacher. I also volunteer 2 days a week at the Humane society. I have tried many things to help in this battle with Dystonia, some of which are physical therapy and exercise. I just got back from Abbie’s clinic in Santa Fe, NM and from a good pain management doctor to manage pain medicines. Through all I have stayed strong and will continue until I win this battle which I believe I will. I pray everyday that God will show the doctors a way to a real cure. My Mom and Dad had a strong faith which was instilled in me. My story goes on and through prayers and doctors one day soon my head will be straight as an arrow. So I would say to all STR”S be strong and never give up and look to God when those days come and you just have to cry and let it all out. That is okay! We all have to cry at some point. Just don’t give up, keep positive! This is not the end of my story but just the beginning. Thank you for listening to my story and hope it gives you the courage to fight this ugly affliction that has reared its ugly head for so many of us. You are not alone. Look towards the Dystonia web site and you will meet up with people like you and I. Also, if you can go to one of the Symposium’s you will meet some really wonderful people, I know I did. Bless all of you out there and remember to be kind to yourself and when you look in the mirror you will see a beautiful face looking back at you. You are still you!
I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand