Tessa Lynn managed to get her thoughts together to share her experience with having ataxia through the HFA blog. Through everything, she has always felt very supported by her husband and she enjoys every moment with her sons.
I struggle to find the words so don’t mind the errors and it may seem I’m rambling remembering and putting words on paper is not an easy task.
Where do I begin? I am 5 months pregnant, I find a lump, and fast forward I get a call from my obstetrician it’s breast cancer. That is the beginning. I received chemo and was experiencing horrible intense headaches about a year later. The first experience that I actually remember where ataxia began was a rest area with a slight hill to a viewing. I remember stumbling and slipping. About a year later after stumbling, I had an MRI. I thought it was a tumor, what else explains my stumbling and loss of balance?
I was always a really good athlete and loved to dance. I have 3 boys who keep me going. Each day is a new struggle. Walking is becoming really hard and the tremors are making it worse. What keeps me positive is a very supportive family. My husband and my boys who are very understanding give me hope.
Live for the moments. Enjoy what you do have and those moments that make you go “ah”. Be thankful, I know it’s hard we do have hope. I get worse every year. I have had two pregnancies while having ataxia. Being pregnant and stumbling not a great combination. I also lost my ability to drive because I would zone out and forget I was driving. I used to love exploring and hiking, you just have to be creative and I remember what a neurologist told me after getting my diagnosis of ataxia: “you have to learn to live life differently”. I recite those words when I struggle. My boys are athletic and play sports. I don’t play catch or kick the ball. I can’t find the balance to do those things. I recite those words and find a way to still be a part of my son’s sports; I roll the ball while sitting down. My one son is called Kruise like cruise but with a K, he is 12 year’s old and plays baseball and soccer. Krosby is 9 and plays soccer, and Kam is 6 and also plays soccer. I am a soccer mom who has ataxia. Those don’t really go together. I see people go “wow your boys are extremely athletic why do you struggle to walk?” When I was younger, before getting sick, I played several sports and was avid adventurous. I loved making spur-of-the-moment decisions and going on spontaneous road trips. Ataxia has taught me a saying I was always taught when I was younger: patience is a virtue. You learn to slow down, you have to be creative. With different decisions, you learn to live life differently. I dream of no more ataxia. Explaining ataxia to people who don’t understand it is difficult. How do you explain a loss of coordination? Your mind is always in a brain fog and I have a hard time understanding simple directions. I set alarms for everything. My memory started getting bad, for every little detail of my day I set up an alarm because I do not remember it unless I am alerted.
My husband is extremely supportive and helps me every day, be it a small thing to remember or a big thing he helps with. It was a crazy love story. I was younger and had a crush on my older brother’s friend. We ended up actually dating and getting married soon after. I always see those different memes saying “will your partner leave you if you become permanently disabled?” My husband stuck by me. The cancer was a few years after getting married and the ataxia started slowly and every year it gets worse and nothing in our marriage has ever changed. We got married, gosh, 15 years ago. I would not have made it without him and my boys. It’s a hard struggle to get through each day. My family is what gives me hope that there is a happy ending; a pot of gold at the end of the rainbow.
Explaining ataxia is not an easy task. How do you define everything that sums up ataxia? It’s definitely humorous watching me walk. I compare it to the pregnancy waddle where I spread my feet apart and shuffle while wall walking or furniture crawling. Trying to explain wall walking and furniture crawling to someone who doesn’t understand it well: wall walking is leaning on the wall and balancing yourself using the wall to guide you. Furniture crawling is another crazy one, you grip onto furniture and use it to help guide you along the way. Ataxia is hard but I will not let it determine my life.
Thank you Tessa Lynn for sharing your story!
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