When I started down this path 11 years ago, I knew nothing about MS. I didn’t know anyone who had it. I didn’t know how it could affect a person. Now, unfortunately, I’m a bit of an expert.

MS manifests itself differently in each person, but for me it has been a left-to-right and a bottom-to-top disease. Problems started in my left side and moved to my right side over time. Problems started in my legs and moved up over time. About three years ago, when both legs had become nearly useless, my upper body started to show the effects of the disease. Now my legs are dead weight, and the left/right game is being played out above the waist. My left hand is severely disabled, and although my right hand is far from healthy, it’s hanging in there.

Given that I’m right-handed, I feel fortunate that this will be the last man standing, so to speak. Of course nobody asked me 10 years ago, but if they had I would’ve preferred that my right hand be the final appendage voted off the island.

So what’s going on with my left hand? It functions kind of like a pair of pliers – a very weak pair of pliers. For example, I can’t grab a bottle of beer and drink it with my left hand, but I can pry my fingers apart, plop a bottle of beer in my lap, and keep it in place for a few minutes with my left hand. Now that’s useful!

I can’t use my left hand to help me open bags or bottles or cans or boxes. Those become single-handed tasks. It’s of no use to me for washing or grooming. I don’t use my left hand at the dinner table. It lies passive at my side. I’m able to make some use of my left hand for helping me to zip up a jacket. I can sometimes grip the bottom of my coat just enough to hold it down as I use my right hand to pull up the zipper. But I fear that this ability is short-lived.

Luckily my left hand is securely connected to my left arm. Although I can’t lift my arms above my head, for tasks below my neck my arms are still relatively strong. I can enlist my arms to raise my body enough to transfer from wheelchair to bed, wheelchair to wheelchair, or wheelchair to toilet, for example. When I do this, I again make use of my left hand like a weak pair of pliers. If my left hand can grasp something it tends to anchor my arm enough so that I can accomplish the transfer.

I use a standard, no frills, power wheelchair in the house. It’s more maneuverable than my iBot, and this allows me to save miles on my iBot and hours on its batteries. This chair only requires that my left hand can wiggle the joystick ever so slightly, and I’m still able to do that. Controlling my wheelchair with my left hand is preferable, so that my relatively capable right hand is available for all other tasks. The operation of my iBot, however, requires more hand dexterity and strength, because of all the buttons and knobs that I must manipulate in order to take advantage of the various modes of operation. Almost a year ago I relented and moved my iBot controller from the left side to the right side. Because my good hand is otherwise occupied, there’s no zipping down the sidewalk while enjoying an ice cream cone in my iBot.

This is all well and good, but the horrible part about MS is not so much what it has already done to you, but what it might still do. I look at my left hand and I know I’m seeing the future of my right hand. Despite the fact that I have a loving support system, adequate financial resources, and a resilient (if not sunny) disposition, and even though I won’t be the first person to ever face such hardship, it’s shit like this that keeps me awake at night.