I Would Want One More Normal, Ordinary, Regular Day

A few weeks ago the editor of the MDA/ALS Online Magazine asked me if I would be willing to write a blog entry that would tie in with ALS Awareness Month in the USA, the month of May. I said yes, and then was asked to answer this question.

Complete this sentence: If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more _______________________. 

It is such a difficult question to answer. ALS has taken so much from me, stolen so many "one more times." The loss of my legs, the weakening of my arms, the loss of my career, the loss of my financial well-being; all the losses of ALS, and those which are coming, make it almost impossible to choose just one thing. Then I realized that the thing I wanted most of all was one more regular, ordinary day.

I want a day where I wake up refreshed instead of exhausted before I lift my head from the pillow, tired before my day even begins. I want a day where I just swing my legs over the edge of my bed and stand up, without an M-rail, without transferring to a wheelchair, without being afraid that I might fall in the process. I want a day where I can walk to the bathroom, stand up to go pee, shower vertically instead of sitting down. I want a day where I can dress easily, upright, instead of sitting on the bed fighting with compression socks and pants.

I want a day where I can go into my kitchen and actually see what I am cooking on the stove top, where I can reach the things on the second shelf, or even higher. I want a day where I can get the milk out of the fridge without fear of dropping it, without hands that shake so much it spills as I pour. I want a day where I can unload and load my dishwasher. I want a day where I can sweep the floor.

I want a day where I can take my grandchildren to the park, to play with them, to throw a ball or chase them in a game of tag, maybe even take them fishing. I want a day where I can pick them up, hug and hold them, carry them when they are tired, where I push their buggy instead of them pushing my wheelchair.

I want a day where I can go to work, contribute, make a difference in my career. I want a day where I can go into a meeting room and not have to adjust chairs to make space for my wheelchair, or go out for lunch and not have to worry if the restaurant has steps or high tables. I want a day where I can pick up a coffee and not worry that it might spill all over me as I drink it.

I want a day where I can go home and not worry if the elevator is working, where I can take out my own garbage, where I can walk across the street for groceries. I want a day where I can go to the market without worrying if the electric shopping cart is in use. I want a day where I can cook dinner and not worry about burning myself as I reach across my stove.

I want a day where I can undress for bed without having to sit down, where I can simply go to sleep without having to arrange pills and pillows so I can reach them at night. I want a day where I can make love. I want a day where I can close my eye and my last thoughts are not about how terrible this disease is, about what it has stolen from my life. I want a day where my last wish was that I will wake up tomorrow, not the reverse.

If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more normal, ordinary, regular day.