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.