This is the first of in a series of posts about the caregiver of someone with multiple sclerosis. It has been 16 years, to the day, since Joeli was diagnosed. I remember thinking “OK, this isn’t so bad, it’s not like cancer or ALS. She will still live a happy, healthy life with some minor impact. As time has passed, I realize the impact it has had on her and our family.
There are times when things are mostly fine. When I say fine I mean she is in her wheelchair and moving around without much effort. Then, there are times when she can’t make the three steps to the toilet. As anyone who has cared for someone with a physical disability knows, people who are disabled do not like help that they don’t need. But as I watch Joeli struggle to move her foot the distance of her big toe, I want to give her foot the gentle push it needs to go the distance. But, wisely, I refrain.
Some might say that the physical challenges are the most difficult. I would beg to differ. The emotional impact of MS has been like a slow moving storm. You can see it coming, but you have no idea of the impact until it hits. This has been true on so many occasions. And I am sure that other’s said this to me, but this phenomenon is incomprehensible until you are “in the storm.”
I think the thing that is most frustrating about this disease is the emotional impact. As my two kids have watched their mother deteriorate, I can only imagine the pain. But then again, that is all they have known. As for me, I struggle with the delicate balance of being available for help, but not jumping in too quickly. On the 16th anniversary of my wife’s diagnosis I must say that I love her more than ever. Her attitude and her spirit make me realize how simple my problems really are.
