Poster Children

I have a thing about poster “children”.  When I received my initial diagnosis, me being me, I said let me learn everything about it, I can.  I am notorious for doing my homework.  First thing, we reached out to the MS society.  My diagnosis, which I reject or maybe deny, is PPMS.    Actually, I reject but that’s another day.  So we receive their packet.   Talk about poster children.  The PPMS brochure has woman in a scooter and she talks about how wonderful it is now that she has her scooter.  F’ing excuse me?  Not only is this not what I want to hear, it’s a piss poor message as far as I am concerned.  So, how I am going to cope and fight with this disease is bop around on a scooter?  Really?  Not me, not yet, probably God’s willing not ever.  We start with surrender and acceptance?  Not working for me and I don’t think it should!  We scratch MS society off our list and decide to fly solo.

Next, just this month we receive the newsletter from the Institute that’s treating me.  Monitoring is actually a better description.  See inspiring story on page…  Flip to page.  Another woman saying she wept buckets when they told her to use a cane  but now it is sooo wonderful.  Well, I didn’t weep when we had that conversation. I argued and acquiesced.  I don’t cry as a rule in front of other people.  I work really hard at not crying about this.  When I do, it’s usually frustration and rage as oppose to fear.  I have to use a cane now most of the time in public and it is so not wonderful.  I understand I do need to be safe.

What kind of message is being sent?  Are we Victorian?  Am I supposed to lie back and think of England?  I get it about false hope.  But what about possibilities and determination?  They don’t seem to fit in this “traditional” setting.  Well, I worked for years in fashion and was always considered trendy so this is my take.  Screw these “poster children”,  my trend is not to go quietly into the night or anywhere, not to surrender and not to accept defeat.

4 thoughts on “Poster Children

  1. I too was diagnosed with MS, unfortunately that changed to NMO. I am not in denial, but I don’t fit the box and I refuse to accept that one day I might. Granted, one day I probably will but not now, and not if I have anything to do with it. I bought myself an awesome cane with smarties all over it, because if I am going to have to use one, I’m gonna make it look cool. Luckily I don’t need it yet. keep on keeping on. We have to keep fighting for a better life or we just give up…. and that just doesn’t work for me 🙂

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  2. You don’t have to fit in any box or be on any poster– none of us can or do, really, because MS is ridiculously different for each person. All we can do is share our victories in hopes that they help others, & console each other when it seems like all is lost. Hang in there, lovely.
    P.S.- I nominated you for The Liebster Blogging Award. Follow the link to my post for instructions.
    http://msandfabulous.com/2015/03/28/a-long-time-the-liebster-award/

    XOXO
    Jess 💋

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  3. I’m a big cryer haha but I’m not good at anger. We all have our own ways I think. But yeah, I haven’t done much to connect with the MS community, aside from the blog. I can accept that I have the disease but I don’t want to hear about how awesome it is once you give in and get the walk in bathtub or move into a one level house. I’m not there…will I ever be? And if I do physically have to do it, I doubt it will be with a smile on my face. I will adjust but that doesn’t mean I’ll do it willingly or easily. Today I pulled 2 stumps out of the ground while saying eff you MS in my head. So that’s how I’m feeling about it right now…maybe I do have some anger in me after all.

    Don’t go gently into the night. I know I won’t.

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