Friedreich’s Ataxia News Forums Forums Living With FA Will we ever accept FA?

  • Will we ever accept FA?

    Posted by Frankie Perazzola on July 20, 2020 at 10:27 pm

    Do you ever think about how difficult it is to try and except something like FA into our lives?

    I wrote an article discussing how I have grown with my acceptance of FA over the years. What I was like when I was first diagnosed compared to now.

    Article

    Do you think you have accepted your diagnosis? Do you think you will ever 100%?

    Frankie Perazzola replied 3 years, 10 months ago 3 Members · 4 Replies
  • 4 Replies
  • Isabelle Desmarais

    Member
    July 21, 2020 at 11:18 am

    Hi Frankie, Personally, I use the verb “welcome” instead of “accept” … meaning that FA is part of my life. But the acceptance at 100% is too big.

    • Frankie Perazzola

      Member
      July 21, 2020 at 4:18 pm

      I like the word welcome. Thank you for sharing! I agree, I don’t think it will ever be 100% either

  • Karina Jeronimides

    Member
    July 21, 2020 at 4:14 pm

    With me it’s not about acceptance or welcoming my FA. It’s about having to have gone through some massive changes, and to have adapted for my own survival. My therapist calls it resilient, resourceful and independent. I say it’s about kicking FA in the ass, before I run out of ressources. But I’m not heroic by any means. I live alone, I’m divorced from a psycho, I share custody of my 2 kids, that I single handedly raised until the ages of 14 and 12, and I have a PhD and a full time job. It might look impressive, but it’s not. It’s rough. Work is all I do. There is no fun. I mainly just collapse from exhaustion when I have free time. I don’t trust people, as most try to take advantage of me, financially, emotionally or socially. And I’m happy when I am able to take out my trash with my massive power chair. The highlight of the summer was when I was able to renew my expired license by going to the DMV in my manual chair with a girlfriend – my life is easier than for many with FA, I feel so crappy for all the advantages I have, but it still sucks majorly in my opinion. I now don’t cry that I can no longer enjoy the beach or travel, or that I’m stuck at home. I also am not as jealous of joggers or people that go on exotic vacations. My standards have changed, but that is not acceptance. I’ve had to adapt. And it gets tougher as my body degenerates. And like the fool that I am, I keep on adapting.

  • Frankie Perazzola

    Member
    July 21, 2020 at 4:25 pm

    Wow! Your story is kind of incredible. I know sometimes it can be difficult to pat yourself on the back or give yourself kudos but you really need to when it comes to addressing your accomplishments! You sound like an incredible human being.

    No matter what you think about yourself, what you said is just proof of the strong and resilient person you are. That is extremely impressive regardless of how much you work. Dealing with FA is very difficult so to be able to receive a PhD and raise two kids on your own is incredible. Please don’t be too hard on yourself. I know it’s easier said than done but your accomplishments are everything!

    I truly admire your hard work and perseverance. I hope that you can find a hobby or activity that you truly enjoy to give yourself a little break every now and then<3

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