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searching for self-identity

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    searching for self-identity

    Hi everyone,

    Long story short, I feel like MS has robbed me of my self-identity… I am only 30, living back with my parents, am essentially (and by definition too I suppose) a quadriplegic because I have minimal use of my arms or legs anymore, and I just do not know who I am really anymore…

    Before the huge spiral down to isolation in a power wheelchair, I was in grad school in a PhD program, had traveled the world, and was happy with my life and where it was going. But now, I sit at home doing nothing more than watching TV or reading the random sci-fi novel on my Kindle, and the most dreaded question I get asked at neighborhood parties (that my parents drag me to) is "so what do you do?"

    So I guess my big question to all of you is how do you answer that question? I am working with vocational rehab but when I showed them my resume they just say "wow, so can you find a job and maybe we can help you from there?" I do not know what to do or who I am anymore, and this just stinks!

    I feel like I have been physically tossed back to "Ground Zero" and I am not sure how to move forward… Any suggestions?


    – Joe

    I hate that question also. I've had to keep from defining myself by things both mentally and physically, and I can see how many aren't comfortable with what's left. People don't like to think about things like MS.

    Anyway, my usual answer to that question is "not much".

    I think that if you need a sense of identity, reach outside those things. Find your own identity, and a way to express that in one sentence. "Not much" might not be ideal, but it's a place to start.


      I would say something funny then ignore. However one thing I have done is start writing about 2.5 or 3 years ago, about stuff I'm not supposed to write about, but just because I want to. I can't believe it but I have written over 400 pages. I haven't published it yet for a couple of reasons, but I will say that writing and thinking freely has been a great experience.


        You are awesome

        Joe you are awesome! Don’t forget that.

        Humans prefer certainty over uncertainty. A fact that all street magicians, con men and politicians try to exploit. We label, box, and simply our experiences in an attempt to own them. But you are not simple and you cannot be owned. We can often fool ourselves into thinking just because we cannot give as much as we are used to giving we are not capable of giving anything. But this is a convenient lie that frees us from dreaming a new dream.

        You are still the person who was brilliant enough to be a grad student and you are no doubt creative, adaptable, and hardworking. You should be proud of that. You can still explore the world and try new things for as long as you like. You could consider teaching informally perhaps? Or as modern jazz says -write.

        Most of all I encourage you to seek out people with whom to create cool stuff. I’m pretty stable right now but I still exchange fan fiction and fantasy shorts with my best friend. I show off the unfinished paintings I am slowly moving to completion. I talk to whoever is crazy enough to talk to me and now I have amazing people all over the country whom I call friends.

        You are powerful. Give yourself permission to risk and try things out. You may need to step back sometimes (learned that myself still have emotional breakdowns sometimes) but when people ask me what I do I’m proud to tell them the truth. “This month I’m painting dragons and cleaning stuff.

        I hope you find your next adventure and find yourself right where you always were.
        Gatitude can transform common days into Thanksgivings, turn routine jobs into joy, and change ordinary opportunities into blessings." - William Arthur Ward.


          Originally posted by SpottedCat View Post
          You are powerful... when people ask me what I do I’m proud to tell them the truth. “This month I’m painting dragons and cleaning stuff.
          I LOVE THIS.
          All the best, ~G


            Originally posted by SpottedCat
            We can often fool ourselves into thinking just because we cannot give as much as we are used to giving we are not capable of giving anything.
            SpottedCat points out the kind of thinking all too current today!

            Society judges by success and not by effort.

            We fall into thinking similar... we literally become our own worst enemy and therefore curtail our attempts even before putting in an honest effort.

            As Kierkegarrd said;

            To be a particular the only true and highest significance of a human being...

            Or as SpottedCat put it.... YOU ARE AWSOME


              I know that you posted this a while ago but you're still active on the site, so if you want you could always say you're medically retired or taking a medical leave of absence. You can steer the conversation from there, or let the other person. If you let them, you could wind up talking about what you were studying, what you're interested in now, or educating them about MS.

              If I was forced to quit I would still say what I did, as one of my HS teachers said I earned these degrees and I put my time in on the job and nobody can take that from me. An MS group leader also said, "just remember, it's not your fault." It's not like we smoked for ten years and got emphysema, or were stationary and got heart disease. This is a bolide meteor, hit by a bus, random suck thing that happened and it can just as easily happen to the person you're talking to.