Monday, June 13, 2005

You don't have to be polite!

At this point in my new blogging career, I am a little uncomfortable with my frequent mentions of needing rest, needing to escape the heat, needing to accommodate my disability.

Perhaps my readers don't even notice. Perhaps they are convinced I am a complaining crybaby. Yeah, it's hot. So what? Buck up!

Well, I may be a crybaby, and I am certainly a complainer, but I don't think many people could buck up the way I do. And I'll tell you why.

Multiple Sclerosis may be a killer, but it's a slow one. I'm more likely to die in local Elmira City traffic than I am through MS. I sure as heck will die faster through the help of Black Jack Kevorkian, who's killed many more MSers than would have died naturally, than I will through this disease. And simple depression must kill more MSer than the actual condition itself.

Point is, for many MSers the diagnosis is their signal to stop fighting. Oh well, is that what this is all about? Thank God there really is something wrong with me! Let's look into disability benefits and relax.

Now, now. Easy, there. I know not every MSer is a goldbrick. I hope not many are. But a person with MS hears about everyone's' relative who has it. I hear stories that make me physically ill about people who frankly stopped living after their diagnosis, even though their relapsing/remitting MS does go into remission.

If you have MS and are confined to a wheelchair, or God forbid, more serious life support, Lord bless you. This site is may not be for you. Or anyone with severe disability brought on by the condition has more to handle than I can help.

If you've just been diagnosed, you are sad, sick, furious, whatever. This site is not for you--yet. Give yourself time. Read the Kubler-Ross works on death and substitute MS everywhere you read Death. You've got some serious grieving to do over the healthy person you once were. When it starts to feel like you are losing valuable time, and you are tired of the whole disability thing, come back and tell us about.

If you are done grieving and have resumed living, we need to talk. You need to contribute. I want your help with this site.

Don't be polite. Dig in. Don't mind your manners or your writing. That's what editing is for. I am an editor, a writer who can't keep her opinion to herself. That's all an editor is. Willing to correct what I see as mistakes. It's my site, so it's my right. If you disagree, start your own site.

It starts with dialog. You comment, I comment back, and so on. That's called a thread in blogging. If you have good stuff, we start posting. If you have a lot of good stuff, we open a new site with links back and forth.

Everyone is invited. MSers, their family and friends. Coworkers. Fellow worshippers. Businesspersons. But the most important contributions will come from anyone who has conquered, even the least little bit, any aspect of living that is affected by Multiple Sclerosis.

Everyone is invited. If no one comes, then I will have my own party. No pity allowed, for me, anyway.

I can laugh about it, or I can cry about it. Believe me, I'd much rather laugh.

Little Pond


Dreaming again said...

Hi! I'm Pk. I don't have MS, I have MG (Myasthenia Gravis) another neuromuscular disease. My brother in law does have MS. (husband's brother). He lives in Montana and I've only met him 3 times in the 17 years that I've been married to my husband, so I really don't know much about how it's affected him. Most of what I know about MS is from what I know about autoimmunity through having MG and lupus.

I found your site through Dr. Rangel's 10 Commandments Drug list.

Just wanted to say hi ... Looks like you're off to a good start. I like your sense of humor!

pb said...

Let the blogrolling begin! I believe this lady's site has much to offer those of us with MS. She will be my first BLOGROLLER.

Thanks PK.

Pam said...

Hi Patricia,

Just checking out your website. I told my friend Roma about it so hopefully you'll hear from her soon. Gotta get to work.

love you,

Jayme said...

I'd much rather laugh about it, too, and in the beginning I did! But then people began dropping from my life like flies. Now I am grieving that loss. I didn't grieve the loss of my good health because, frankly, my health was horrendous from the toxic lifestyle I was living. I changed my lifestyle completely and now I feel wonderful! So as far as MS goes, I'm good. I am in the early stages, and I am choosing the alternative route to treatment. No injections or chemo or steroids. Just healthy stuff for me now. I've never felt better in my life!

It's those around me who can't deal with me having MS. It's like I'm contageous or hideous or something. Other than online MS friends, I am in this alone. I give myself limited time for pity parties, but then I am happy and ALIVE again!

Love your blog! Keep being real.