Monday, March 30, 2009

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."


  1. Please accept my apologies if I offended you - that was not my intent. I was afraid these support groups were making you feel worse - and you don't need that!

  2. Lori, Pardon me for being a bit frank here.

    The ideas that you won't be able to maintain previous friendships, or that you and Joe will be divorced so soon, or that you won't be able to handle stress or get your brain and eyes back IS BULLSHIT. Ignorant asshats who don't have a clue about YOU!!!

    Can't promise about the high heels. And I don't know what kind of dancing you're talking about, so can't speak to it. Keep in mind that I don't have a clue about you either, other than the impression I get reading your words.

    But I can tell you that a friend of mine has MS and has a "retirement plan" when the day comes she can no longer fend for herself. That day is not any time soon, but it is something which has been talked about.

    Let me pose some questions to you:

    What elements made up your life before diagnosis?
    What have you done as a livelihood? Are you unable to do the same thing for a living at this very moment? And what had you pictured as your future?

    Allow yourself to grieve for the loss of your future as you had pictured it. Consider talking about these issues with your Social Worker.

    Please know that you are not alone and that your experience is unique, but not really.