Yesterday, I had the joy of participating in the first annual MG Foundation of IL walk. I didn't walk, I got pushed in the wheel chair, but I was still so glad to be able to be there. My parents and brother participated with me.
Almost everyone there seemed to be without wheel chair. I think the instant thought that goes through the head is everyone is doing fine, except you in the wheel chair. Disregard that first thought. The real reason most who attended are not with wheel chair is because of the following.
First, while talking with other MGers prior to the walk I learned many were not attending but their families were on their behalf. So, to begin, the majority of the people at the walk don't even have MG. Second, some of the MGers were helping out in the tent, so they didn't walk it either. Third, some MGers have occular MG which means it only affects their eyes, thus they can walk without trouble. And fourth, and the biggest and I feel most important... even deserving of a new paragraph...
If you attend an MG event or meeting with me, I think the majority of the MGers will be doing fairly ok, probably don't use a wheel chair. Why is this? Well go back to the first reason in which MGers aren't there but their families are. Why aren't they there? Well if I was having a very bad day, or still in the hospital, I wouldn't be there either. Those in worst case scenario are unable to attend the events. Thank God I do have a wheel chair and family to push me. Many people aren't blessed with that privilege and therefore much more confined. It was also 50 degrees yesterday... such crazy weather for June, but cold does affect many MGers just like heat does. It certainly affects me. My muscles were beat after that walk even though I didn't walk it. So every little aspect affects who is going to be at an event or meeting.
It's unfortunate because I think it would be great to always have a wide range of MGers... so that family and friends can see the variance in person to person, minute to minute. But since this is not the case, we must keep an open mind about the situation we are within and remember it is only a glimpse of the big picture.
Opportunity for a call of action here... if anyone has a wheel chair, walker, cane, scooter, etc. sitting around that is not being used, consider donating it to an MGer or another with a disability who would benefit greatly from this. Sometimes I wish I was able to get an electric wheel chair so I could just "go for a walk" to the park or around the block by myself. But, I must remember the wheel chair I do have has been SUCH a blessing. I never once felt embarrassed using it because I have to use it to get out and about. I always said this disease isn't going to stop me and if I have to use a wheel chair I will. Some people might not be at that point of acceptance yet and might not want such help, but there are others out there I know would love such a gift to assist them in leading a more active and "normal" lifestyle. Since MG is rare and not known by many, there is not as much support and causes out there to assist us. Be the blessing you would wish to receive if you were in that situation. Always BE the blessing and I just know you will in return receive a blessing.
Lastly, there is another MG walk which will be put on by the MG Foundation of America, national foundation but local walk in Naperville, IL in Sept. This one will be a fundraiser where you sign up and raise money for the cause. I would love to do this one too. This one allows for teams as opposed to just registration as an individual. I didn't know if anyone would want to do this with me but a friend had asked about such opportunity and it made me think maybe there are others out there who would like to participate with me. So, if anyone would be interested, please just message me and let me know. I'll be making a decision soon to register as an individual or team. It would be awesome if friends, family, old and new would like to join me. And if not, you can still help by making a donation once I start fundraising. As always, anything and everything to help is much appreciated.
Thank you!
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