Everyone has that one friend or family member who, upon hearing your plan for something – a building project, or a party – jumps right in to help, saying things like “don’t you worry, I’ll take care of…” some key part of the project. You smile and thank them, appreciating their enthusiasm; but experience has told you that something will prevent them from completing the act, so you go ahead and make other arrangements to cover “their” part. You protect yourself so that you won’t be “left in the lurch” when that person again fails to come through. I don’t know, maybe it’s codependent – there are classes for that.
That’s what living with MS is like. For me personally, my enthusiastic friends are my legs. After many last-second letdowns, I’ve had to accept that they will fail me, regardless of how secure they feel. At first I did “freak out” when one or the other of them cut out me, I was surprised and angry. Pretty quickly, though, I learned to accept that these sporadic failures are just going to happen, and other measures needed to be put in place. Enter a walker, a manual wheelchair and finally a power wheelchair – the Pro’s have determined it’s best if I don’t count on my legs at all. But my bathroom is too small for any of these helpers to enter there.
In the bathroom, one wall is now completely covered from end to end with ADA approved grab bars to assist me from the door to the toilet and the tub. I have a shower bench and a hand-held shower head, and I even have arms affixed to the toilet. All of these things are in place so that I can use my hands (or whatever) to do the work that other people count on their legs to do. To be honest, I do occasionally “test” my legs out, determining to use my grab bars as little as possible. I can take one step before I’m grabbing the bars.
To be smart, I only shower on the days when I feel like I have the energy to get myself securely out of the bathroom after showering. Well, today was NOT such a day, but people were going to be in my apartment and my hair was noticeably dirty, so I determined to shower anyway. Yes Vanity, thy name is STILL Susan.
Sure enough, my post-shower trip across the bathroom was eventful. My legs stubbornly refused to move at the start of the trek, necessitating the use of the grab bar AND the surfaces on the other side of the room – smooth closet doors (NOT advisable) and then the counter. The left leg collapsed just at the end of the trip. My physical/emotional reaction is still the same – a gasp and alarm – but I had one hand on a grab bar and the other on the counter, so my backups did their job.
Life teaches us who and what to trust one way or another. The weird thing with MS is that we have to learn not to trust parts of ourselves.