The story of Erin Solomon
Just Me
I was born “normal”. I lived all of my childhood normally. Then at 23 I began being clumsy. I would trip easily at first. Eventually this led to sudden drop falls while I was just standing. I went to doctor after doctor and got several diagnoses, but eventually it proved wrong. I was thought to have inner ear issues, I was tested multiple times for M.S., but everything always came back perfectly. Of course while this was good news, I did feel a bit frustrated not knowing what was going on.
I had my son at 31 and began using his stroller as a sort of walker for myself. As he got older and didn’t need a stroller, I began to push a sort of cloth folding shopping cart. At this time, my son was to hang on to the side of the cart, instead of holding my hand, and I would put all of our things in the cart so I didn’t have to carry anything. The cart was used as a walker.
33 is too young to need a device to help with stability in walking and my Neurologist at the time suggested I try a cane. I was not able to coordinate a cane and walk, so I used a cane for 1 day and switched back to my “shopping cart walker”.
My gait was becoming more ataxic and wobbly, my speech was becoming slower/slurred, my hearing was worsening, I lost reflexes in all the areas they normally check, and I was having neuropathy in my feet and legs. I chose to give up driving in 2014. I was 34.
I kept searching for answers and kept switching doctors. Then one day I got frustrated. I need to know what was wrong with me! I begged God to help me find someone to help me.
In 2015 I wasn’t feeling well at all. My nurse from my then, Primary Care Doctor, ran bloodwork for thyroid and other general bloodwork. Of course, everything came back normal, except I had elevated liver enzymes. It was later confirmed that I had gallstones. However, she suggested I might want to have surgery. I chose not to. (I also fired that doctor later.) My gait was worsening and I began using a rollator walker in the home and a mobility scooter outside of the home. An entire year went by and I began having gallbladder attacks. In 2016, following my son’s 5th birthday party, I was rushed to the ER and ended up in the OR for emergency gallbladder surgery. I was showing signs of jaundice.
After coming home, I began to worsen. My jaundice was worsening, and my stomach began filling up with fluid. The surgeon had me run all over town for testing and finally sent me to the TX Liver Institute. At this point, I was so weak I couldn’t push my acceleration on my mobility scooter so my husband had to put me in a manual wheelchair. The night before my son asks, “Mama, are you dying?” Fighting back tears I responded, “No, baby.” It was a bold-faced lie! I knew I was dying! When I saw the doctor, her mouth dropped to the floor and sent me immediately to University Hospital. I was so full of Ascites, I looked 9 months pregnant! I was so jaundiced, I was no longer yellow, but orange and my hair was copper. I was basically in Liver failure. I had so many tests and procedures done. I prayed God wouldn’t take me yet. I prayed for healing. I prayed for strength. I prayed non-stop. Sometimes my prayers just were tears, but that’s ok because God knew. People would come to visit me and always come in and say something about how I was always smiling! The truth was, I didn’t want anyone scared! I knew if I died, I was going to be with Jesus in Heaven. 2 months in almost, and my liver numbers began improving. No diagnosis! I eventually went home and 6 months later was in perfect health! (Years later my Hepatologist revealed that she didn’t think I would make it out of the hospital.)
That side story was important to share, because while I was at University Hospital we talked about my ataxic gait. I was connected to a Rheumatologist outside of the University Hospital System. I checked her out and after several “normal” testing she referred me to a Neurologist through UTHealth (which has connections through University Hospital).
After seeing this new Neurologist and testing everything she could, she finally said, “This is some kind of genetic Ataxia. The problem with genetic testing is that you have to test the right genetic disorder and it could be a very long process. However, the most common genetic Ataxia is something called Friedreich’s Ataxia. It’s very rare. Only 50k people around the world have it.” I felt like God told me this was it. I read the pamphlet of what this was, and even though it’s scary, I had a sense of peace. I was tested in 2018 and the results were positive. There’s no cure.
In 2018, I joined the Rare Disease list with AIH in June (when my liver numbers went crazy again and I finally got a diagnosis), Late Onset Friedriech’s Ataxia in October, and 2 Mesenteric Spontaneous Desmoid Tumors in December. Hey, if I’m going to join a rare list, I’m going to do a good job of it! Haha! 3 Rare Diseases in 1 year!
Friedreich’s Ataxia (FA) is a progressive disease affecting the nervous system. Losing your abilities is frustrating! I would give anything to be normal again! However, you can’t dwell on it! If you do, you will make yourself fall into a hole of depression. God says that I was created perfect. He apparently uses me to inspire others. I never thought of it like that, but so many people say that I am so inspiring. I just feel like me, but if one person is inspired by me and finds Jesus, then this life is worth it!
People often say, “that I am inspiring because no matter what life throws at me I smile at it head on and never seem bothered.” It’s like I always say, “play the hand of cards life gives you. These may not be the best cards, but make the best of it. Who knows, the next round could be better!”
People often say, “you are disabled, but you don’t let that stop you.” I respond with something like, “life keeps moving and so do I.” Ok, if I cannot do something like I used to, it is not game over. It just means find another way to do it! I reassure people who tell me that. I tell them, “if you really want to do something and can’t, don’t you try, try again? It’s the same thing for me.” I loved all things arts and crafts growing up. Guess what! I still do! However, I do some things differently and it still is beautiful!
That year I gave up driving, it was the hardest! To lose the freedom that way was hard, and I completely understand how older people felt when they had to lose their license or be told they could no longer safely drive. Now that it has become normal, it no longer bothers me. Recently, I was tested to see if I can be a candidate for driving with hand controls. I passed! The next step is to be fitted for the proper type of hand controls. If at any point they feel I cannot drive with controls safely, then I will no longer venture down that avenue. It is a glimmer of hope. It does feel exciting! However, if it turns out I should not drive. I’m okay with that too!
We are all sinners and fall short. That’s why we need Jesus! With that said, there are people that don’t treat others with respect. This happens to all sorts of people. Not just people with disabilities. I have been discriminated against because I was disabled, I usually brush it off and go about my business. Typically, I don’t let it bother me. My thought is, “they don’t know me or what I can do.” Only one time did it ever really sting so bad, that it took me a while (months) to bounce up and try again. Generally speaking, most people want to be helpful. Many times I will go somewhere and people will want to hold the door. I’ll be shopping and people will want to get stuff off the shelf for me or help me unload the cart on the check-out counter. If God is calling them to serve me, why deny their offer? It takes a piece of joy away from them that they may have needed. Occasionally, you’ll be on an aisle and you can’t reach something on the top or bottom shelf, and even though somebody else sees you trying to reach they will walk right past you without saying a word. They don’t even want to make eye contact, in fear that you might ask for help! I don’t ask those people for help.
The problem with being in a wheelchair or mobility scooter that most people don’t know about is… the bathroom. It makes it hard to visit other people’s homes. Most homes don’t have wide enough doorways for my chair to fit through. I can walk short distances, but I need my rollator walker. Also, most homes don’t have grab bars. I rely on those. While it is difficult to visit other people’s homes because of the bathroom, it is hit and miss in public. Sometimes handicapped bathrooms are not really handicapped accessible. Sometimes places will slap grab bars up, but the chair can’t fit in the stall. If you really got to go, you’re going to have to go right in front of everyone who walks in. Try going to the bathroom with the stall door wide open! That’s embarrassing! Sometimes there are ramps to the bathroom, but once you get in, the stalls are elevated and you have to step up. What? Obviously, someone without experience being handicapped in a chair, designed those bathrooms. Everybody who is disabled has a different type of ability or need. So, when those were designed, I think about somebody else who could have been disabled but could have still used those restrooms. Unfortunately, it’s not a one-size-fits-all type deal.
Being disabled is hard. Being able-bodied is hard. I know because I have been both! I didn’t imagine my life this way, but God has a plan and a purpose. I trust Him! I may not fully understand it, but this path has led me in a direction I never would have thought I would have been. God is good ALL the time!
My body will progressively keep failing me, but I can’t live in fear! That’s no way to live! I will continue to find the joys of life, and I will continue to pray for a cure! A new medication is set to be FDA approved this year. It’s not a cure, but it will help slow down progression. It is a step in the right direction!
February 29th (or 28th on non-leap years) is Rare Disease Day. I bet you didn’t know that you know such a Unique Unicorn! I bet you didn’t know about the 3 Rare Diseases I have! On Rare Disease Day this year, you now know someone to think about.
I am just me. This is my story, and God is good ALL the time!