Everything is exacerbated if I leave my home environment. And everyone wants to help me. But even though they try hard, they are not walking in my shoes. All I want is for those people to leave me alone! I’ve noticed that the more my disability has increased, the less patience I have with others helping me. Three and a half decades of living with MS is a long time, during which I have figured out what works for me and what does not. When people try to help me in a way that they see as being more beneficial to me without seeing the reasons I do what I do, it frustrates me.
I Wish People Understood That Not All Disabilities Are the Same
Our cleaning lady does anything I ask her to. Her heart is certainly in the right place, or she would not want to help at all. She and I have a good working relationship, but we keep our distance. She tends to lump all disability into one basket. I know this because she occasionally compares me to her parents and what they went through in their older years. But comparing these two situations is like comparing apples and oranges, in my opinion. There is no way I can convey that to her, except by being completely blunt. I am afraid of hurting her feelings, but fortunately, altercations are soon forgotten, like the one that happened the other evening. On that evening, I was coming down the stairs very carefully, backward like I always do, gingerly grabbing the railings on either side. Our cleaning lady, unbeknownst to me, was watching my movement, and she piped up with the opinion that I would be better off sitting to come down the stairs. She was adamant that that was the solution. My response, about why that wouldn’t work, did not seem to matter. The whole situation annoyed me. I really didn’t want to have to explain to her all the issues with my legs. I have spasticity and contracture in my left leg and spasticity and clonus in both legs. How would she understand that? I just know that I cannot get technical with her. Long story short, I am not coming down the stairs by sitting. She is a very sweet person, and she gave me her opinion on a better way to come downstairs — as she saw it, anyway. How am I supposed to react?
When People With MS Offer Help, It Feels Different
Another situation occurred that same week, where two people from my MS group were trying hard to get me and my wheelchair over a threshold. This situation played out very differently from the one with our cleaning lady. First of all, my friends recognized my situation, asked me a few questions, and understood my needs. I recognize that these folks also had MS, and there was a feeling of inclusiveness, which I do not deny. But this situation showed a hands-on approach to me that was unlike that used by our cleaning lady. Obviously, I am biased. But in this situation, with my friends with MS, I knew how to react. In the situation with our cleaning lady, I did not know how to react. I understand that this is complicated.
I Need to Work on My Reaction to Unwanted ‘Help’
The only way to finesse this situation is to allow things to unfold. I have to see how things feel before I react. If I am too emotional after encountering a situation like the one with our cleaning lady, I should learn to just walk away. It’s refreshing to know that not all encounters are difficult. One of the keys may be the way one reacts, in this case, me. Patience and giving the benefit of the doubt are higher functions that I should be able to attain by now, but obviously, one is dealing with different people, who come with different beliefs and attitudes. In summary, one cannot cherry-pick one’s challenges.