Bella

I’m Bella and from China, thanks to this platform so I could share my story here.

My diagnosis was very easy, not that complicating. I went to the doctor, tell them I want a genetic test, then boom! I won the lottery.

Cause I know the existence of SCA3, after years watching my father from being a masculine man to a small skinny silent person in a wheelchair who would suffer. One patient parent and a ignorant caretaker parent can ruin a family, especially the kid.

I hate being so smart to eavesdrop conversation pieces between my mother and her friends and then deduct the disease is inherited and I have 50% chance to survive, or not.

I was so sensitive for my body that I noticed something was wrong when I was in college. At gym class, no matter how hard I tried, the teacher would always say I am not good at balancing. But that time I can walk without feeling strange, so I thought maybe it doesn’t mean anything.

Then I got my master degree, I got decent job and married to a guy 4 years ago. This marriage was totally a disaster and I’m still suffering it.

At 2022, I lost my job, and my husband got internet scam and lost all his money. My father passed away, he didn’t make it during that horrible summer.

That time was when we were locked at home and only allowed to go out with a prove that your Cov-19 test was fine. And I didn’t find the chance to go back to my father’s funeral in my hometown.

But I managed to go to the hospital and asked for a genetic test. Two months later, the test came out and delivered to my address. SCA3. I was like “Ok, so I knew it.”

The doctor was cruel, she said “No treatment, just go home.” I was furious by this attitude and filed a complaint about her on the hospital’s web.

My family doesn’t provide any mental support for me after this happen. My friends somehow does comfort me, for which I held a lifelong gratitude. My family are like ostrich. Pretend that if they ignore this fact that I’m sick and life could go on as usual. Well I need to say this attitude won’t take you for long. They simply have no courage to face it, let alone help me.

That was almost 3 years ago. Now my mother, still afraid to contact me cause she doesn’t want to know. My husband has no empathy and thinks all my symptoms are FAKE.

Only good thing is I have friends who support me, and I can only feel free and comfortable when I hang out with them. Cause I know I don’t have to be afraid of falling, even I do fall, someone would always pick me up.

And luckily, I have a job which allows me to work from home, so I can avoid the commute. Walking can be the biggest trouble for me now. Although this job might would not last long, but I already saved a bit from it and I believe living can find their own way eventually!