If you are looking for ways my MS impacts me and us, I am sure you will find them. It is not hard. Much as I may wish them to at times, they refuse to hide. When flustered, I can not recognize what’s in front of me, like the pacifier under the pillow where I looked 3 times (and where I found it 5 min after putting O to bed)…If you are looking for things to be wrong, you will find them as easily as when you note I am constantly rubbing my wrists as if I could magically rub away the discomfort. I promise. However, I think this is true for all of us in all walks of life. If we look for the ways reality is less than perfect, we will never stop finding that for which we search.
If you are looking for the “old me,” I am here too. If you look for me, I am still here loving as much as ever and trying everything in my power to find new ways to improve. I am still up cleaning or working on tasks around the house at my slow pace until close to 11 two of most every three nights. It is a slow distracted pace after nine, but in my defense, I have been up since five. I am still going to spend free time trying to do activities for our family whether it is writing this so I can stay sane or searching for vacation rentals because we as a family are important to me. I am still here.
When you tell me to recognize my MS is causing problems, it leaves me incredibly frustrated. You seriously have not seen me say exactly this? It feels like I soiled myself, and you want to rub my nose in it as public shaming. When people who could be helping suggest my MS is a reason not to care for K, it feels like I am drowning looking for peace, and all you have to offer is a bucket of chaotic water to dump over my head. Yes, there are times I need support, and maybe it is more because of MS. Who takes on mammoth tasks like raising our kids does not?
If your looks towards me are filled with contempt or pity at us for attempting a task that seems Herculean at times, you will come to see in my face a mirror. Likewise, if you look towards me with love and wishes to help, you will see it and gratitude reflected back at you magnified with all that I am capable. If you are sad or mad because I am not the same person I was ten years ago or more, I cry for you and your expectations. Neither of us is nor can be. Nor should we try. The idea by which I try to live is not to hold static that which we once were. To do so is to deny all growth, and I am not yet done growing.
I have MS, and to this point, it puts quite a few temporary limitations on me. However, there are only a few things I used to be capable of doing that I cannot do with calming balm of time, whether it is button my shirt, learn to run again or even learn to think differently.
Sincerely,
An Attempt at Living with MS
A note about A: For the past week she has been subject to teasing on the playground because she keeps trying the monkey bars and taking forever. Kids push her out of the way, and even mock her as she tries, falls and tries again. It might be easy to ask why she insists on continuing to try, and the answer goes back a few weeks to when she tried them and fell. She fell on her back and had the wind knocked out of her. Since then, she is determined to make it across. Much like when she struggled with arithmetic and worked at our dry erase board for weeks A’s math issue I suspect the monkey bars will fall to her determination like everything else has. She may have a harder time picking up some new skills than others, but my money is on her when it comes to somebody maximizing their potential through hard work and force of will.
She inspires me to try to live up to her. If it seems backwards for a parent child relationship, so be it.
