More or Less

by Dean Kramer 
November, 2003


It’s a beautiful, warm day at Cripple Creek. The sun is shining on glorious Autumn foliage, and almost all the household winterization chores are done. Twink is off on a hike with two of our dogs and a friend who has a dog of her own. They are exploring the trails at a nearby state park. My best friend, Bart, is away for the weekend with a few more of my friends. They are hiking in a state forest several hours to the north. I am no longer able to go hiking, and I am here, at home.

It is sometimes hard for me to face not being able to do things I once enjoyed doing. I can think about a loss of ability with equanimity, but when the actual moment comes and everyone is hopping into the car to head off for (in this case) a hike, it’s not easy to be at ease with myself. It’s also hard for my friends. They have to accept the loss of my companionship on such outings. They feel bad for me. They miss me. And they probably feel a little bit uncomfortable racing off for a terrific time without me. And, although some activities can be modified so as to include me, rough trail hiking is not one of them.

As MS can affect the energy and abilities of those who suffer, we find ourselves having to make choices and set limits. Friends and family members may not understand. Those who do may not be able or willing to help us compensate for a lack of participation, a presence, in activities they can still enjoy, nor is it healthy to expect them to do so.

For me, the healthiest response seems to be, first, an acknowledgement of my own sorrow. Before going forward it’s always helpful for me to recognize where I am. Next, I need to deconstruct the entire situation and rebuild it in a way that serves me, with my MS, as I am now. For example, I can’t join my friends on a hike, but I can do each of those things separately.

I can ask them, on their excursion, to observe carefully and fill me in on all they saw and did. I can go outside on my scooter and do the same with my own journey. I can take a book, binoculars and a sandwich. I can enjoy a day outdoors. And, I can join my friends later for dinner where we can share our experiences.

No, it isn’t the same as taking a hike with friends. When you have MS, depending on your degree of disability, many things are not going to be the same. But, as I often write in this column, not the same doesn’t have to mean not as good.

Recently, I talked with a man with MS. He was sad that he could no longer help his daughter with her athletic endeavors. As we spoke it became clear that he gives her a great deal—attention, emotional support, good listening skills, expert advice based on experience. He recognized that these are gifts many able-bodied fathers do not offer their children.

When it comes to family and friends, I can explain myself. I can ask for understanding. I can point people toward resources to help them understand. I can ask for compromise and accommodation. But, in the end, I have to find my way toward fulfillment without reference to other people.

When I can do that successfully, I find I have more to give to those others, more to share, and a greater sense of security within myself. That hard work creates an atmosphere that leads to deepening bonds of friendship and family connectedness. But don’t just take my word for it. If it isn’t already your practice, try it for yourself the next time you feel stymied by loss of a former activity and abandoned by friends or family members.

Soon enough, cold snowy days will be here—days when a scooter is not really useful and I am more often confined indoors. But today my scooter is charged up and I am heading outside to revel in this Indian Summer weather!