Sunday, April 18, 2010

i'm so bad at keeping this up

I've been curious/concerned about facebook lately and its influence on the masto community. recently this sort of meme-thing went around about how Christopher Reeve had mastocytosis and it might have played a role in his death (i guess the story goes he had an anaphylactic reaction to antibiotics) Now, I don't know the specifics of his death, I wasn't there, I don't know the Reeve family (though I do support their foundation, as even though they don't support masto research, stem cell stuff may help us in the future) so I can't comment on whether or not there is any validity behind the claim that mastocytosis killed Christopher Reeve. I mean it's possible. It's also known that he had a severe spinal injury that most people don't survive. I know when I get a cold or cut or bruise myself badly my mast cells flare up into full effect. I can't even imagine the impact of a spinal injury would do, of what being a quadriplegic would do to the mast cells.

What I -do- know, without reservation, is that even with mastocytosis, Christopher Reeve was superman. He was a student at Cornell, a stage and film actor, he was an athlete, an equestrian, he was asked to run for congress....he had a ridiculously full life -and- he had mastocytosis. He did all that in spite of the disease we have.

Don't let the circumstances of his death (which are cloudy) overshadow the fact that he achieved a lot. he lived. fully.

What upsets me is that i posted a very abbreviated version of this on someone's page on facebook (who constantly posts about masto in the most negative and ill informed light, inferring we're going to die, that we will need organ transplants) and they "unfriended" me and then wrote some passive aggressive shit about me.

Now, I'm all for forming a community for people who deal with this disease. I think it's crucial, I think we need each other. But we also need to not throw daily pity parties and spread around dangerous misinformation too...and I see a lot of that happening on FB, way moreso than I do on the various mailing lists that I've written about in the past. It's interesting because both the mailing lists and FB provide us with community, but they seem to come from completely different angles. I almost get -scared- when I feel like I'm "teaching" someone who has masto about their disease, especially if they're being very vocal about stuff that doesn't make sense.

None of this makes sense. We'd need to be MDs or PhDs for this to all make sense, and I get that. But I guess I just am wondering if I feel the need to be educated more important than the need for masto-friends...But don't take this to mean that I don't want masto friends, because I totally do. I want people that I can relate to, who won't look at me with pity or fear if I get flushy or rashed up.


In other news, I might have to step on a plane soon for the first time since my diagnosis. It's still very up in the air at the moment, but it's quite nerve wracking too.


Foxxy One said...

What a tool. I like your take on things. I loved Christopher Reeves. He played a huge part in my childhood and I prefer to remember Superman as he was - an amazing and full of life human being.

Life is what you make of it. There are some people who have this damn disease so bad they can't leave their homes. My heart aches for them. I am blessed to have very manageable issues. In their honor I'm living my life to the fullest just as you are.

Have you flown before? Did you flair? I've never (thankfully) had an issue with flying.

Bridget said...

i know. i think for some people this becomes the definition of who they are, and i wouldn't hesitate to say there is some enjoyment in the attention.

i agree, even though i have issues from time to time, my goal is to live the fullest life that i can. some days are rougher than others but this is it, you know?

i have flown before, and i'm guessing i flew with masto (just wasn't symptomatic at the time, the last time i flew was maybe 4 months before my diagnosis) however i was on steroids for both flights, so i'm going to play it safe and take steroids ahead of time this time as well.

One Sick Mother said...

Yeah Facebook seems to have a magnifying effect on certain character traits, particularly among people with chronic conditions. There was some very bad behaviour centered around one of the EDS support groups there. I meant to write a post about it actually.

The best analysis I have found of Christopher Reeve's death is by a doctor and page one (of five -the links are at the bottom) can be found here

According to this guy, it had nothing to do with masto.

Bridget said...

that is a really interesting article, thank you. while i'm guessing it's possible masto might've played some role, this really sheds a lot of light on all the other reasons it didn't.

Stacie Hogan said...

I wasn't aware that Christopher Reeves had masto. As a mother of a beautiful 4 yr old boy who just found out he has systemic masto this is very encouraging! Thank you!

Terri said...

I had to give up all the Masto support groups because everyone seemed to be more focused on what they couldn't do, than what they could. The truth is, is that you can live a full and happy life - you just need to make that choice. I manage quite well. Of course there are rough patches and days that I don't feel like doing anything but going back to bed, but I work hard to avoid my triggers, take my meds, and try very hard not to use it as an excuse to not live.

As for flying, I have never had issues and I have travelled around the world. Just make sure you have your regular meds, and be especially aware of your triggers. I also have a piece of paper in tucked in with my passport, that gives details of the disease, and when I go places like China or Jordan, I pay a few bucks and get it translated into the language of the country I am heading to. I have never needed it, but it's nice to know that it's there.