Monday, February 25, 2008

Being There

As I have said before, I hate having Multiple Sclerosis. It does not make me a better person. It does not make me grateful for what I have or more appreciative of life or cause me to stop and smell the roses. It just makes me cranky, resentful and self-pitying. And sick. Anyone with MS is very sick and probably in constant pain, but we look pretty darn good, so people tend to forget just how darn sick we really are. As I have also said before, there is no justice in this world.

I do believe that most people are basically well intentioned. But they can be incredible knuckleheads. In attempts to be “helpful”, they say the most mind-bogglingly insensitive things. For instance, I might point out it is less than helpful to tell me about the 61 year old woman who has died of MS. I figure at that rate I have about 8 more years. Someone actually told me this. And read me the obituary. And asked me if I knew her, as though I know everyone in the world who has MS.

Guess what? It may be greedy, but I would really, really like to have more than another 8 years. So that is information that I find depressing to the point of paralysis. Telling me about people who died of the same disease I have is probably at the top of my list of things I don’t want to hear.

Some other things to consider not saying, after polling people with chronic conditions:

* My cousin had that and he was cured after eating nothing but bean sprouts (or applying crystals or drinking oxygenated water or meditating) for a year.
* I heard that medicine [that you are taking] causes death, insanity, blindness, extra limbs, take your choice.
* This is God’s will.
* God never gives you more than you can handle, or its obnoxious cousin, this will make you a stronger person.
* Oh, you go to that doctor?
* I believe people who really want to do get well.

Some things to consider saying to anyone who is sick or in any kind of distress:

* I am thinking about you.
* I am praying for you.
* Here is my number if you want to talk.
* I am sorry you are going through this.
* I don’t know what to say, but I care about you.
* Can you tell me if there is anything you need?

People who are struggling, for whatever reason, physical illness, temporary setbacks or something else really big (even if it is only really big to THEM), mostly need support and presence, love and genuineness. None of us are perfect. You don’t have to find perfect words.

Maybe don’t remind them they are going to die. But be there.


Anonymous said...

thats been the most difficult part of the last couple of years. Watching my friends fall to the wayside. Oh a few really good ones have stood the test of time, but the others have slowly faded into the woodwork. Yes, i suppose we can say they weren't the best of friends then, but that doesn't mean that losing them all is easy, or that i don't miss my old life, or them. And i know exactly what you mean about being surrounded by the knuckleheads and their ridiculous comments. If my mother calls one more time and asks me if I am all better.....I swear. I finally said to her just this morning. Mom, are you expecting some miracle? Do you expect me to one morning answer you with well whadda ya know......i'm walking great, feeling great, have tons of energy and the pain is magically gone. She actually sounded embarrassed from a thousand miles away. No she said, i know your not going to get any better. So i wonder then to myself, why do you keep saying to me......are you better today??? Petty on my part perhaps, but it just gets exhausting.

I hate that you have MS too Marie

Marie said...

Oh, I'm sorry, too that you can relate to this. I hate it for you, too.

I kind of feel sorry for your mother as well. It must be painful and futile hope that forces her to ask that question of you all the time. She must be terribly sad and scared. Not that it makes it easier for you. Or reasonable. I don't think you were petty at all.

Since your mother is asking you that question every day, I won't even tell you who it was that read me the obituary. :)

And you're right, nothing makes losing the things we have lost any easier. Not rationalizing about the depth of the friendship. Not even wonderful new friends.

That is one of the things I miss too, is my old life.


I will be thinking of you and you will be in my prayers.

janet said...

i have no idea why my comment showed up as anonymous...i certainly wasn't trying to hide myself, lol

perhaps i'm hitting the wrong buttons, this is the first time i have ever blogged.....gosh, how out of it am i? In case i do it again, its me Janet, lol

thank you for keeping me in your prayers.

Marie said...

Hi Janet! I figured it was someone I knew!!

I just thought maybe you were trying to keep a low profile! lol There's nothing wrong with that!

Hey, this is the first time I'VE ever blogged. You think you are out of it?! I'm hopeless. But you figure it out through trial and error.

You are always in my prayers. I pray for all of us MSKK'ers all the time. And the ones we don't know.

God knows we need it.

Jessica said...

It's good that you're writing about this, because people don't always know how to act or say. Just love them even they are saying inappropriate things. It's showing they care. Just think it as, better they are saying something than ignoring the whole issue.

Marie said...

Jessica, you make a really good point. Thanks for helping me to think from another angle.

I am so grouchy and you are so nice! :)

Anonymous said...

Marie-I've been going back through some of your older posts. You do have a way of cutting through the clutter to get right to the heart of the matter! I admire that.

I'll have to admit I don't know much about MS, but I can say I'm sorry that you do know. I have been guilty of making insensitive comments in my life and maybe hours or days later realize how it may have sounded to the other person and hated that I said it.

Let me say in advance I'm sorry if I do that with you.

Marie said...

Tricia, you most certainly have not said or done anything insensitive.

But it is incredible what some people will say. When a lovely lady at church found out she said to me "Oh, but I guess you don't have it too bad."


Well I guess if being in a wheelchair qualifies as having it bad, then I don't. But I still have a pretty horrible illness that does pretty horrible things to me.

Anyway, enough ranting for one day!! :)

Back to my writer's block.