Life is hard : I live in the United States, in the... - Ataxia UK

Ataxia UK

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Life is hard

AtaxicFarmer2017 profile image
6 Replies

I live in the United States, in the west. I have ataxia due to my cerebellum having atrophy from a virus. I used to run a large farm and a twenty two pivot irrigation system. I drove and worked on all kinds of equipment. I had a motorcycle, four wheeler, and side by side I drove daily doing irrigation. I was a master mechanic and welder. I have been in a wheelchair for two years now and I miss it all. I loved my job, there were long hard days, but I felt free. I now feel like a prisoner in my own body. I can’t walk or feel my left hand or foot. The thing I miss the most is driving. On any given day I drove a pickup truck, tractors, semi trucks, atv’s, and swather, or combine. I realize how blessed I was now.Things are a lot harder now. People treat me differently now, I recently went to the Mayo Clinic and was denied a Uber ride because I was in a wheelchair. Some are mean, some people are great. Life has definitely changed, and I’m trying to make the best of it.

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AtaxicFarmer2017 profile image
AtaxicFarmer2017
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pinjem profile image
pinjem

I think I understand. I had a very full life and did much. I have found ways to be useful and employ my mind online. I miss the freedom of jumping in a car or just walking whenever I want. I have found a huge freedom on a trike that is also electric, could you have something like this with your lack of sensation? I would have bought a mobility scooter if this had not suited, they make ones almost like mini 4x4's now. Yes, some people think you are not a thinking, feeling person, most just want to be kind and this is lovely. You have the best attitude, 'trying to make the most of it' I spend time looking, listening, smelling, watching which most people are not able to do, I'd rather be usefully occupied but we can live in the moment and appreciate the beauty that most people simply do not have time for.

AtaxicFarmer2017 profile image
AtaxicFarmer2017 in reply to pinjem

Thank you pinjem for your kindness. I’m looking into a electric wheelchair, but it’s just starting to snow here. Thanks again.

Yeah, I know how you feel, I loved driving. I bought an old car when I left the Navy and drove everywhere, loved it.

Broke my heart having to give over my licence....

As for people and their crazy comments, well:

A/ I broke my big toe so I know how you feel...... Really!

B/ Why are you in a wheelchair, you look okay😡

C/ Talking about me when I’m actually sitting there😡

I still get out and about on my electric chair, but restrictions still curtail a lot of things.

Keep smiling, have a great day👍😃🇺🇸

AtaxicFarmer2017 profile image
AtaxicFarmer2017 in reply to

Thanks for your kind words. I do as many exercises as I can and go where I can in my wheelchair. I’m trying to rebuild my muscles as I lost 60 pounds. One day fine, then all the sudden, I had no balance and couldn’t walk. I guess that’s how things go though. I’ve come a long way cause I couldn’t sit up and I can now, and I can kind of talk and see again. I’m grateful for the things I can do. Thanks for your reply.

ConfusedAtaxian profile image
ConfusedAtaxian

I sympathise with you as I had to give up a very active lifestyle, gardening (which I loved), driving etc. I cannot write at all or type too well, I also feel somewhat useless watching my dear husband who has prostate cancer do everything. We are moving from the south to the north near my family - they will be shocked. Some folk are plain ignorant, others accepting. I hate the fact that people talk to my husband (instead of me) whilst I am there, makes me slur more with frustration. Keep smiling farmer. At least we’ve no pain. 🤗

AtaxicFarmer2017 profile image
AtaxicFarmer2017 in reply to ConfusedAtaxian

Sorry to hear things are so tough. Thank you for reaching out to me. I hope that your family will be blessed.

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