"I hope you are able to find new hope while living with this disease."

This is one of the things I just don't understand. This person is a stranger to me. She just happened upon my blog, and decided that I was a great candidate to give hope to other people neither of us know because I have self-identified as someone with MS.

You know what I have hope in?

Science.

I have hope that the collective fundraising groups are throwing more money at research and science than they are building websites to build hope.

Hope is a false profit.

Science, that's got the chance to really change things.

I don't believe that there's a "cure" for MS that doesn't include completely changing one's immune system. Fucking with DNA, wholesale stem cell transplants; that's where the hope is.

It's not on a website full of platitudes.

I'm still well enough that if they found a way to permanently halt the progression of my disease, I'd be okay. I could live for the next 50 like that. No problem. I think that that kind of cure isn't that far away. I suspect that we'll be there by the time I'm old enough for CPP.

It's the reversing of MS related damage... that's going to be where the money is.

Once they get there, the next thing is to prevent MS from happening in the first place.

My hope is in science, not in a bunch of people I don't know.

A group of people with MS walk into a bar...

I've belonged to two MS groups on Facebook (I remain a member in only one), and probably a half a dozen other sites or forums at one point or another. On Facebook I've had some problems with being friended by women who think it's great that we both have MS and then being defriended shortly after they see the stuff I post to my wall. I post a lot of stuff about marriage equality, trans* equality, anti-bullying, anti-racism, atheist organizations, feminism, intersectionality, and rape culture. I also swear a FUCK of a lot.

This is apparently a problem.

It probably doesn't help that almost NEVER a happy person. I choose not to waste my energy seeking an ideal I've only been able to obtain in 10 to 30 second increments. I get the orgasm, I drink the cocktail, and/or I find the perfect thing, it's perfect for a moment, then it's done, and so is being happy for that day. I am content most days, but this constant drive to "Happy" is just one of those insane perfectionist, crazy making, unachievable ideals.

Fuck that shit.

That worldview don't go over so well with the chronically ill. I have yet to see the benefits of trying to be fucking happy when it comes to curing any of my MS symptoms. I try to remain positive around my friends and loved ones, if only to make sure that I am not alienating myself from them.

But the biggest thing I've learned in the past three years is that sometimes the only thing I've got in common with a person who has MS is the fact we both have MS. That's not enough to build a friendship around. At least for me.

Questions

I posted this terrific post by Wheelchair Kamikaze regarding CCSVI to a couple of Facebook groups. This post is thorough and thoughtful and explains better than I could why I am cautiously optimistic about CCSVI and the "Liberation procedure" but not completely sold.

I was then attacked via Facebook messages by people who were completely happy to drink the Zamboni Flavor Aid and were *ANGRY* at me for not being as thrilled and ecstatic about the *cure* as they were.

Oh "ye of little faith"! I, like a lot of us with M.S., am very excited about this treatment if only for the spotlight that this discovery casts on this disease! Don't dash our hopes with your negativity!

That's the only one I didn't delete. The other ones were just fucking rude, like I was purposely trying to piss all over their day by pointing out the obvious unknowns about CCSVI!

I was told that I must be so incredibly disabled that I've just lost all hope and now I can't stand to see other people happy.

I was told that I just needed to get on the MS Recovery Diet and I'll never have an attack again.

I was told to "Think Positively", "Accept Jesus into (my) heart!" and "Count my Blessings! (I'm) not Dying!"

(All Y'all KNOW how much I love being "Brightsided". Fucking gives me the warm fuzzies ALL OVER.)

To recap, all I did was share a well thought out and researched post about CCSVI and then people felt it necessary to send me messages trying to make me feel bad for not believing what they believe.

WHY do people do that?

I disagree with a LOT of what people post to the internet (I have a Twitter account for crying out loud.) but I don't find it necessary to privately message them to tell them that they are wrong for what they think or believe about their own medical condition, even if they are wrong and I know that they will suffer for it. ;)

It's not like I'm some Glen Beck fan spouting crazy in public.




PS.

I'll be back tomorrow, it's a big day.

I remember her saying, "I'm already dead".

My experience with peer support groups was not based on me trying to deal with my symptoms, or what they mean or meant, or needing explanations of what ever ache and pain was about.

I was trying to find out how you deal with the real world when your body can and will stop working for you without notice.

I was trying to find out how you don't shut yourself down and shut yourself out of the real world.

I was trying to find out how you reclaim your life before diagnosis. I was trying to find out how you keep your old life as much as possible. I wanted to know how you deal with having your livelihood, your body, your mind and your senses stolen from you without losing your mind and sanity.

And the truth of the matter is... none of the people in these groups had answers. Or their answer was unacceptable to me.

Today I went outside for the first time in a long time all by myself. I walked 10 blocks from my house to the SkyTrain, took the SkyTrain to Waterfront, walked from Waterfront to my former workplace in Gastown, picked up my last paycheque and the stuff from my desk, walked back to Waterfront, went to the bank, went to the Shoppers Drug Mart at Broadway, grabbed a burger at A&W, and took the bus home in just less than 90 minutes.

My left leg started failing between the office and Waterfront, but the rest on the train made it better once I got to the bank. But for the most part, the outing was uneventful.

(Well, I got new mascara. That's eventful. It was on sale for $7 and we'll see how I feel about it later.)

Tomorrow I have an appointment with my social worker at the MS clinic. We've got some stuff to talk about then.

That brings me back around to the title of this post (which is a sample of Patricia Krenwinkle, a former Manson family member, used by White Zombie in the song Real Solution #9) and the original point of this post.

If not being able to get something that looks like and acts like who I used to be is the expected and tolerated outcome of MS, then I'm not sure I want to live.

Maybe I haven't allowed myself to fail enough yet, but I'm not drinking the MS support-group Flavor Aid just yet. I refuse to believe that the only friendships I'll be able to maintain are people who meet me after my diagnosis. I will not believe that Joe and I will be divorced by the end of 2011. I cannot accept that I won't be able to handle stress or dance again or wear heels or get brain and eyes back.

If I that's the way it HAS to be...

"I'm already dead."