What Emotions are you dealing with? - Muscular Dystrophy Message Board

michigani · 06-24-2008, 09:08 AM

I find that I'm dealing with myriad emotions concerning my LGMD. The biggest ones being: Frustration, Fear, Depression, Embarrassment, Anger, etc.

Of all of these I think frustration is the most predominant. I got used to not doing the big stuff like sports, hiking, etc, but it's the stupid little things like not being able to get up the step into my house, or that I can't bend over to pick up a small item I've dropped. That's the stuff that makes me grit my teeth and growl

. My family says "don't get all upset, we'll help you" but they can't really feel this.

Second is fear. I constantly wonder what the future will hold. I'm not so worried about myself but what this will do to my wife and kids. I feel bad it's affected our vacations, home life and future.

The good news is that the other emotions: depression, anger and embarrassment are all very mild and I barely feel those things. Maybe once a month for a few minutes. And of course there's always "Hope". That's the big one that keeps me going and helps me keep a positive outlook. I have to believe that the cure will come in our lifetime. Hopefully for the kids first, and then shortly afterwards we adults.

Mark

CJs Mom · 06-24-2008, 10:09 AM

Hey Mark,
First let me say, you are a very humble man! The part in your post about helping the children with this disease, then the adults, proves to me that you are an angel!!!!

As you know, I do not have MD, but my 5 year old son does. So I know I don't know what you are feeling, but I have so much pain, frustration and fear over this disease that it really gets me down at times.. He will be starting kindergarten this year and I am absolutely terrified of what some of the kids may say. I can't bear the thought of someone making fun of him, but I know it will happen, because it already has a few times and it literally breaks my heart, because physically, there is nothing I can do to help him.

But you keep your head up!!! Let your family help you all they want, and try not to be frustrated by it. It's obvious they love you very much and they want to help. We all must try to remember that strength is not really found in your muscles.... but strength lies within our hearts!!!!!!!
I hope you have a great day and maybe, sometime soon, that "HOPE" will become a reality for everyone affected by this disease!!!!

Have a great one
Lori

michigani · 06-24-2008, 11:55 AM

Thanks Lori for the uplifting reply. If I was next in line for the cure and there was one dose left to give out, I would let Caleb go ahead........I have stood on the rim of the Grand Canyon. I've hiked the Appalachian Trail, run the bases, and held someone's hand walking a sunset beach. Your little boy deserves all of this. And I believe he will know these things someday.

Mark

npwnry · 06-24-2008, 04:43 PM

How about a little self pity and jealousy? Sometimes I wish I could be just like "everybody else", rather than be dragged down by such a rare and life-altering condition.

I will also say that, since I started using a wheelchair, I've developed a lot more faith in humanity than I had beforehand. The wheelchair make it unambiguous that I have a physical problem (rather than the "normal" appearance masking profound weakness, which confused people). And the many, many people who hold doors, smile (not in a piteous way), offer help, et cetera is quite remarkable.

michigani · 06-24-2008, 05:03 PM

Oh yeah, I've felt both of those too. I watch people jump out of their car and run into a store and I think, "Gosh it must be nice to do that without thinking". It's a major event for me to get into a store.

I've noticed as well that it made a difference just using my cane. Without it people would think I was drunk or just "weird". The cane makes people realize I have a problem.