by: Maggie Harling
I’m medically trained, but the best description of MS I ever heard was from an auto mechanic. “Imagine a car” he said. “Nowadays computers run cars and the computer communicates with the rest of the car by insulated wires. MS is a disease that eats away at that insulation, causing the message to be lost or even jump to another wire. Effect? Some things in the car work, and others don’t”. What he didn’t say, which is also true, is that MS can also get into the computer itself and wreck the wiring there, allowing crazy messages to be passed to the car.
So, here we sit, like cars with wonky wiring. The effects of the disease vary for everyone, the only common theme is to expect the unexpected. I might wake tomorrow with numbness or weakness in my foot or hand, or both, and it might get better or it might not. Medications for acute exacerbations, chiefly steroids, are unpredictable in their effects; sometimes they work miracles and sometimes they have no effect at all. Over time, even with the new DMTs (disease modifying therapies), deficits often start to accumulate…
If you think about it though, we MS patients may have an advantage in this game of life. Planning for the future is so hard because everyone lives with the unknown around the corner, we just know we do. MSers tend to be very good problem solvers. When planning for a future event we don’t just plan on one way of getting something done. We know that, on that future day, we might have trouble walking, so we include a cane or a walker in our plan. When we move, we think about first floor bedrooms or rails in the bathroom. We may not ever need these things but if we do, we are prepared.
The other thing about MSers is that we can, if we let ourselves, really enjoy simple triumphs. It may not be a big deal for a healthy person to learn to kayak, sail, ski, or ride a horse. There are programs available to teach us all of these things and people who delight in sharing them with us.
So, to my auto mechanic friend, I would say this. We may have wonky wiring but this is how we roll!