3. The Grim Reaper

The Grim Reaper symbolizes death and when I first read about my disease, what automatically came to mind was the Grim Reaper. I have a disease called Friedreich’s Ataxia…

What is FA?

Friedreich’s Ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich’s Ataxia. Pretty high odds right? Well not really when you’re looking worldwide!

When you look at this disease, it is pretty grim but it’s also pretty interesting so if you would like to read more you can click on this link: https://facty.com/conditions/genetic/what-is-friedreich-ataxia/?utm_source=adwords&utm_medium=m-search&utm_term=&utm_campaign=f-h-dynamic-ads-conditions&gclid=CjwKCAiA_P3jBRAqEiwAZyWWaGnaNU3Z07Bhpeq03dXU1ZQVhs9PPtJGwlIUYtPSqurpofKAmUvx4xoCSEYQAvD_BwE

Anyway when I was 8 or 9 year’s old I was going to summer camp. This picture is what I call my last summer as normal child. And I had to have a physical. Little did I know my life was about to change forever! So when my mom took me to get the physical, the doctors noticed that I had scoliosis which is a curvature of the spine. Upon further testing and I’m not sure why that was done, it was determined that I had Frederick’s Ataxia which is a type of Muscular dystrophy and scoliosis turned out to be an effect of the disease. I was poked and prodded for most of my childhood. Needles don’t really bother me anymore because I dealt with that so much when I during my childhood.

My husband talked to my mom when I was not around and she told him some things that I don’t remember. She told him that when I was diagnosed my mom and dad felt horrible because I was pretty much being given a death sentence. I mean just think about what they were going through, they just found out that their youngest daughter was going to lead a difficult life that would most likely end in death. And from what I knew it is a hereditary disease so in essence I got it from rodsbarents. So they pretty much gave me whatever I asked for and my mom said that I had gotten so difficult to deal with (behavior bad enough that she had to see a psychologist and that psychologist told her that basically if she didn’t nip my acting out problems in the bud then things were going to get worse. And I don’t mean worse physically I mean bad child worse. (Like basically I needed to have my butt torn up.🤣)

I remember when I was first being tested at the Children’s Hospital in New Orleans and they were doing a muscle biopsy on me which included really long needles. I’m not sure on the size, remember this is a memory from when I was a child, but the nurse was sticking me in the thigh and I looked around and couldn’t find my mom and it turned out that she was on the floor because she couldn’t take seeing that. Oh well I don’t think that was as bad as when I had surgery on my back, to put Herrington rods in to correct my scoliosis, the summer before my freshman year of high school and they had to remove a large number of staples from my back and yes I screamed bloody murder for every single staple that was removed! Anyway despite the many doctor visits, I had a pretty normal childhood. When I was 11 or 12, I got checked for my vision in the school, you know how they test everyone, well lucky me I got to go to the doctor to get retested and it turned out that I was nearsighted. Not a big deal right? Well to a child who is already looked at as abnormal because she walked funny, had to wear a back brace and was now having to wear glasses all the time was absolutely an abomination. It was fun at first but then there were times I would have a bad day at school and I would come home and be so angry that I would lock myself in my room and chuck my glasses as hard as I could at the wall trying to break them. And you know the only thing that broke on them was a little piece of plastic so I still had to wear them YAY ME!

In high school I really started to have trouble with stairs so I got permission to use a key to the school elevator and of course, I could not participate in PE so I had adaptive PE in grade school and I took study skills in High School. I finished number 27 in my High School class and I went on to college at Southeastern Louisiana University. I studied business management but that was after I started my freshman year going for elementary education. I loved children and it was so satisfying to work with children and make a difference in their life. I remember my guidance counselor in college telling me that it would be too hard for me to do student teaching because I did not drive but I think it was for other reasons that I had to switch my major. That was the first of many people assuming that I couldn’t do something. I wish I would have stood up for myself. Oh well I guess it’s true what they say that hindsight is 20 20! It turned out that I was very good at business and learning how to tell people what to do. LOL!
When I graduated in May 1999 my mother bought me a business suit for job interviews. I went on job interview after job interview and was non-stop told that I was either overqualified or under experienced. I believe the reason I was not hired was because8 my disability was seen as a liability. Then I finally got my big break and I started to work at the United States Census Bureau and I absolutely loved it and was using my degree somewhat by auditing payroll. But that job was temporary so I had to do the inevitable and start job hunting again. I finally got hired by a local chiropractor being made an office manager and of course I loved that job, Dr Anthony Zuppardo was the first employer besides the government job to give me a chance. But that was about the time that I met and married my husband. After I was married I turned in my college degree to manage my husband, the house, and children. LOL!

My disease is kind of like cancer with the comparison of I can go into remission to where I do not get worse and I do not get better. FA is progressive and I read somewhere that major trauma to the body can make the disease progress. Like a car wreck, an illness, surgery, Etc. I was never a child who got sick often. So as I grew up and in college I remember toward the end of my college career I got the flu really bad. So after that I got to where I needed to use the walker all the time. I only underwent surgery a few times so that didn’t affect me much. And I have always used the saying “That if you don’t use it, you lose it”! And that very much rings true. When I had my children, I lost pretty much all of my trunk control and I quit walking with the walker almost all the time and that has very much affected me. But that’s my fault! Right now I use a wheelchair to get around in public and I use a power chair at my house. It is sometimes really frustrating to have to depend on other people to get around and pretty much do everything. And then really hard to know what I used to be able to do and knowing that I cannot do the same things now and knowing that I will eventually get worse. I have always been a very determined person, that’s a really nice way to say stubborn! LOL When someone says that they don’t think I can do something watch out because I will do everything in my power to prove them wrong!

Anyway before I was a Christian, I believed that everything happens for a reason. So in saying that I am grateful to God for my disease. Sounds kind of crazy, right, well not so much! If I did not have a disease then I probably would have gone out of state to college met somebody else and married somebody else. And if Mark and I were to still get married I do not feel like we would have taken in the four girls and I doubt I would have my two children. I probably would have still been Catholic not that, that is a bad thing but I have grown as a Christian and in my faith. I am more appreciative of what I do have and I know that it could be a lot worse.

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.
Philippians 4:6 NLT

This is my favorite verse and one that I turn to for everything.

For I know the plans I have for you,” says the Lord . “They are plans for good and not for disaster, to give you a future and a hope.
Jeremiah 29:11 NLT