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    • #11661
      Sam VanNest

      Hello all

      Next week I’m to meet with a young family with two daughters (11 and 13) who both have been recently diagnosed with FA. I’m wondering what positive wisdom I can impart to them. I can remember being newly diagnosed (15 or so) and absolutely terrified. Around that time I also remember meeting with a man maybe fifteen years my senior with FA and being equally terrified. He had driven over an hour himself in an adapted van to meet me, and rather than appreciate his bravery or learn from the experience I pitied him. I found myself staring at his power chair, watching with a kind of revulsion as he lifted his coffee slowly and shakily to his mouth. This, I thought, was my future. Of course, with hindsight I cannot begin to appreciate his courage, and the amazing independence he had. This morning, as I lifted my own coffee slowly and shakily, I wondered how I should navigate this encounter next week, now that my role has been reversed. I hope that I can somehow override the optics of the encounter as I experienced it 16 years ago. The man I had met with, I later learned (or was reminded; he may have told me himself that day and in my terror I simply blocked it out) that he had gone to college and graduate school, inspiring me to do the same.

      Next week I hope that I can be a similar inspiration, while also mitigating the stress that I had felt as a newly diagnosed FAer.

    • #11663
      Matt Lafleur

      That is incredible to hear, @srvannest. You are noble for agreeing to do it, as it is very bittersweet.

      I was like you when I was young. Wheelchair-users were pitiable. Dead-stop. Only with age did I learn to see beyond that.

      My advice? Be completely honest with the girls. Tell them about the experience you had, and how you felt back then. Maybe that will breach their walls and get them to relate to you.

      And you can also underscore the randomness of FA symptoms- that there’s may end up not being the same as yours at all. Maybe that will help lessen their fear, and allow them to listen to you more.

      Keep us posted.

    • #11664
      Sam VanNest

      Thanks for the reply.

      I’ll keep that in mind, about the randomness of FA symptoms and emphasizing its individuality.

      I want to also show that there are twofold challenges to the FA diagnosis: the physical and the emotional. There’s not much to be done about the physical (I can remember being told by my Neurologist as soon as I was diagnosed that a cure and treatment was only short years away) and reconciling with these challenges is key to developing a better emotional response to FA. To live with the hope of some kind of treatment can be as damaging as any social impairment. I want to show that you’re only as emotionally affected by FA as you choose to be. I’ve surrounded myself with a community of friends who value me as a person first and acknowledge the physical struggles as an afterthought, not the other way around.

      It probably sounds trite, but we (as physically disabled) are very lucky to live in a post—ADA (Americans with Disabilities Act) America, where even the physical nature of our disability is assuaged, and this in turn has bred more positive, inclusive notions toward disability. Accessible physical environments have led to a more enlightened understanding of disability. I really want to emphasize that as well.

      I hope to leave a positive impression, is what I’m getting at. One that shows how a life can be lived in spite of and not because of FA.

      • #11671

        @srvannest thank you for being so honest. You are defitnitely a positive impact within this community because of your honesty. People can 100% relate to you in someway or another and it important to remind others that they arent alone like @shandrajamie said. Thank you for being here .

    • #11667

      I think at such a young age it is very hard to look so far ahead and be comfortable. I know when I was diagnosed (age 12), all I wanted was someone to relate to. I remember searching online and there wasn’t much of a social presence of young people. I wasn’t ready to actually talk to someone but I wanted to see young people living their lives I guess. Luckily nowadays that is very possible. I think the absolute best thing you can do is give them the resources to make friends once they’re ready. Another thing would be to tell them about all the cool things you’ve been able to do since connecting with the community. I would recommend the FARA instagram page as well as two youtube channels: by 19 year-old @madelynfrederick1 and by 15 year-old Kate Walker. Tell their whole family about connecting with FARA and events near them. I know you want to give all this good positive advice but I think going into it like that won’t impact them as much as just knowing they aren’t alone out there!

    • #11681
      Sam VanNest

      I will for sure tell them about this thread and the community here. Thanks so much, Shandra and Frankie.

      I’ve never (until now) been active in any way in the FA community. I spent a lot of time and energy advocating for the disabled in general, but never felt compelled to reach out myself to other FAers. In fact I think that I actively avoided doing so. Not sure why.

      Thanks again. Any other links/info/tips for my going into this meeting are really appreciated.

    • #11901
      Sam VanNest

      So I met with the family last week and I think that it went well. We didn’t talk much about FA, which I had been reticent to do anyhow, so I appreciated that.

      What we did talk about was A fundraiser in Annapolis that this family has hosted three years running. I’ve never been much for these kinds of events. I think that I actively avoided them, in fact, my rationale being that FA was only a small part of my identity. I didn’t want FA to define me.

      I’m not sure how I feel about this now.

      • #11903
        Matt Lafleur

        Sometimes it hard for me to tell if I look in the mirror, where Matt ends, and where the FA advocate begins.

        A few years ago, this fact didn’t sit well with me.

        Now though, I gladly choose it. This is a battlefield I am not afraid to die on, and if I leave behind only an awareness of FA advocacy, I am okay with that.

    • #11913
      Sam VanNest

      I agree with you there, Matt. Raising FA awareness is something I can get behind. I struggled with the fact that FA was so unknown, to the point that I would lie when someone I wasn’t close with asked why I use a wheelchair. It was easier than explaining/owning FA every time that it came up. That would be a great discussion thread, by the way: How do you explain FA to people who do not know? So, avoiding altogether or at least mitigating that whole interaction ritual is an issue that I see as important. But being a visible proponent for a cure is something I see as problematic.

      • #11914
        Matt Lafleur

        Sam, I love that conversation topic. It’s brilliant. Do you want to make it and flesh it out a bit? I don’t want to steal your idea.

    • #12682

      I know a few fa’ers and I’ve talked with them . helped them. Gave one our old van that has a lift in it. But maybe its just me or maybe its more of an individuals choice i.e. parents. All of them are over 35 and one when he was younger his parents, at the advice of their dr, fused his spine . he gets along 10 times better than others at his age ( over 40) that I have met. I realize different peoples progression is going to be different . has anyone else come across this ?

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