Things You Should Know..

So I Have Ataxia..

So as you can tell by the title.. yes I have ataxia. you probably won’t google it though lol but, yeah I have that. they never really said ok Ny your diagnosis is ataxia, they kinda just ruled it out like ok well it can’t be this so it must be that. but anyway I didn’t want to disclose this information and I still don’t, but hey what the hell right? anyway I didnt wish to tell anybody this info because I was, an still am..scared. I was/am embarrassed and nervous like, this world and the people in it, are soo “judgey” I walk out the house and the kids literally stop what the fuck they’re doing..and just stare, adults too. it hurts, likedamn what the fuck, what you never seen somebody in a wheelchair before? oh yeah I’m in a wheelchair lol.. but I could walk with assistance or a walker, and talk with assistance as well lol just kidding I don’t need assistance to freaking talk..but I do receive speech therapy, it’s not for train of thought or the forming of words into sentences or anything, it’s more for clarity to be more clearly understood, because with ataxia your voice does change (besides that, I just started speech therapy on January 24 💋) anyway, it hurts my feelings because if I say something to y’alls kids it’s gon be a problem 😂seriously tho, cause kids will make you feel extremely different, extremely weird, extremely.. out of place. yall can say they just a kid Ny, they don’t know no better, well teach them “better” then..that way I  won’t have to say anything and while you’re teaching them you can learn something tooanyway I don’t wish to go anywhere. I don’t want to be seen. I don’t wanna talk. I just don’t. I don’t wanna do anything. I went through a hard time with this whole situaton at first. but now I’m just like fuck it! I’M SICK, I CAN’T CHANGE THAT, I have to just accept this shit and try to make it better.. you know, move on! I mean, in the beginning I couldn’t move without puking I got down to fucking 95 pounds, that’s gross. I mean, 95 pounds is ok. don’t get me wrong, that’s fine. but I’m tall, so 95 pounds? was just too thin. I was all tall looking frail n shit lol yeah I can laugh now but when it was happening I couldn’t. but now I’m in the gym, getting my weight up.. sike na I’m still skinny but I am in the gym and I know I didn’t go deep in detail because it took a lot to even say I have ataxia. so if you have questions I will answer them 😋 shiid I want you to ask them so you won’t be shocked by anything. remember absolutely no question is dumb and you should not feel dumb for asking.. I think it’s straight stupid and ignorant to assume things anyway. so ask ok! but until next time..waiter, 👆🏾I’m done..

Oh, and before I forget do you know anybody with ataxia? I would love to hear their story if you do 😎 ok now I’m really really done can I get the check now please? you see I’m done damn…

40 thoughts on “So I Have Ataxia..”

  1. Greetings Seven Shakur 🙂 , I have never heard of ataxia. I would love to hear yours and others stories on it, what’s helped you get through it, etc. I swear I learn something new daily.

    I felt you when you mentioned you didn’t really want to talk about it. That was a major thing with the lupus and end stage renal disease diagnosis with myself. After ESRD, I lost a lot of weight. I, too, was down to about 95lbs and I was embarrassed about my clothes not fitting, losing my figure, etc. I would constantly hear comments from certain family members about needing to gain weight, eat more, etc. But with eating regimen restrictions due to ESRD on top of food sensitivities it can be challenging. I’ve gained some and am still working on it but it hasn’t looked too bad on me bc I’m short. I still prefer to be at my normal size. It’s not as easy as one thinks when dealing with chronic conditions.

    I feel you on the children also. My younger cousin was very young when I went through all my changes. I realized he was never schooled on what happened as he just stared in realization and made the comment about “why is she so skinny?”. His mother never told him so in this case you were definitely correct!

    I wish you well on your journey and I look forward to more of your posts. You’re beautiful and I love your straight up style. 😁

    1. Thanks ❤ I am still small but I weight about 107 now. My little cousin, just like yours and many other children don’t mean any harm, they just need to be educated on disability.

      I look forward to possibly sharing our experiences in life together as we tackle this 🙏🏾 alot of people in our community have invisible illnesses and by being unafraid to talk freely about what we are going through will encourage others to speak up and share their experiences too 🤞🏾 keep in contact

  2. I’m so proud of your accomplishments and the finality of you accepting your journey, and proving to us and other people that with faith and strength you can always change a negative into a positive.
    Treating people as you want to be treated is always an asset in life. When you think about and show love to people real love from people will be extended to you.
    Never give up always think positive and be happy.
    Love always your auntie Ree🥰

  3. Hi Ny,
    I really like how open you are about everything. I have ataxia too a different type then yours but I still relate alot of what you write. You say the words Im afraid to tell othees, I keep my writing abstract raw, very rhymey and positive because I don’t want upset anyone. But yoh would say f..that cuz it doesn’t matter and you’re right. I live in NJ and been following you on n off since like last year from your instagram #ataxia I think. Much love to you beautiful, strong and intelligent, passionate young women . Keep singing writing and being you. Your angel mamma n grandma raised a great human.

    1. Aw thank you that was so nice. I try to remain calm and positive alot but at times I have to put my foot down and remind them that I have a voice n feelings too. If I can ask, what kind of ataxia do you have? I have Cerebellar Ataxia.

      1. From what I readsee you have acquired cerebellar ataxia from autoimmune disease like you were really sick? You improved instead of getting worse and gotten treatment. Mine started almost 4 years ago slow but quick and gotten worse overtime since no treatment worked. I had so many different diagnosis and unknown cause but I do also have a brain injury from car accident 13 years ago. I am waiting on genetic testing. Cerebellar ataxia is a main symptom along with progressive psuedobulbar palsy, rigidty, myoclonus other movement disorderss. My brainstem more affected then cerebellum. I wake early too, today was especially scary and gratefull i gained back some control and write back to you. I don’t speak or swallow or sit up but in my adaptive way I can type to communicate. Hope you get some more sleep ❤

      2. I never received treatment. I never received speech therapy either but I’ve received pt and ot.I told them I need speech but I wasn’t listened to. I’ve mentioned alot that was ignored smh I received medication for depression but I didn’t take it. I didn’t like how it made me feel. I’m sorry for the things you are going through. But remain positive and Google everything..EVERYTHING LOL because if you roll up in an appointment ignorant to something, they will not tell you. Be steps ahead. If you have any questions, inbox me, I’ll answer. Stay positive ❤

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