We accept one loss, and another comes. Keep working.
A tough New Year’s week has given me new things to accept, and some of my old ways aren’t working. While I know acceptance is key to staying sane with multiple sclerosis (MS), it’s not an easy path. It’s a long and winding road. Things change; we have to keep re-accepting old losses, and new losses keep coming up.
So, why accept things like loss of mobility or of career choices? When I think back on how much harder it has become to do simple things like cook dinner or get out of bed, I really don’t want to accept such changes. When I first consider it, acceptance feels like giving up. Shouldn’t I be fighting back instead?
These are good questions without any easy answers. We can’t always accept things quickly, and we don’t always want to. There may be workarounds we can do. How can we move toward acceptance in the healthiest possible way?
I learned long ago that you can’t change something until you first accept it the way it is. Not accepting is called denial. We think, “This is not really happening,” “There must be a treatment or a pill that will make it better,” “I’m not going to let MS change my life.”
There are benefits to denial. Denial is a crucial survival skill that protects us from facing more loss than we can handle at one time. Religious people often say, “God never gives you more than you can handle.” A truer statement would be that denial won’t let us see more of our situation than we can cope with. It buys us time.
But we don’t want to stay there too long, as with a diabetic who says liters of soda pop won’t hurt him, or a smoker who believes she is immune to cancer. If we stay in denial, we won’t pursue activities and life changes that could make us better. We won’t be motivated to change if we don’t accept that we really have a problem.
Denial is stressful, too, because we know we’re not seeing the world as it is. We’re pretending and not being our true selves. We usually find things go better when we work with them the way they are.
MS people face these issues all the time when it comes to mobility assistance. Some of us won’t accept needing a cane, a walker, or wheelchair. Some are embarrassed to need the help; some can’t get themselves to give up their old ways. So they don’t go places they’d like to go, or they take chances and wind up falling.
It’s the same with other adaptations. Like, why should I learn to use a piece of adaptive eating equipment if MS isn’t really happening? Why embarrass myself with some clunky apparatus that I don’t really need?
When we think like that, we are disabling ourselves. By not adapting, we miss out on things we could actually do. Susan Haight-Liotta, a disabled activist friend, told me, “Disability doesn’t mean not being able to do things. It means finding different ways to do things.” In other words, accept and live the life we’ve got.
One example in my case is exercise. I used to play ball and lift weights. Now all my exercise is seated or lying down. I still do weights, but now they’re 2 pounds, not 20. I have resisted such changes; I find them embarrassing and discouraging. I have had to find ways to accept my new normal, because when I do the exercises I can do, I feel so much better. Not accepting would mean no exercise, and I would get weaker and weaker.
Moving Toward Acceptance
MS brings loss, kind of like life does, but faster. The only way I know to deal with loss is to grieve. If I don’t let myself feel sad sometimes, to cry or even to sob, I’ll stay in denial and suffer. You have to grieve before you can accept.
Grief takes time to process. We don’t mourn an important loss for one day and be done with it. Grief will come up repeatedly, sometimes when we least accept it. We can’t get to acceptance and stay there permanently. But we can get better and better at it, and our lives will flow more easily if we do.
I dealt with this last weekend when some MS bladder problems made me so weak I needed to go for emergency treatment. I couldn’t even get myself out of bed. I was devastated and thinking: “This is the end of living independently.”
But it wasn’t the end. I got treatment, learned a new way to transfer, and now I’m back with a new normal. Acceptance doesn’t mean giving up. If we grieve and accept, then we can fight back. We can adapt.
The Hardest Thing to Accept
One of the hardest things to accept is needing other people’s help. Everyone wants to be independent; we learn self-reliance as children. Needing help is un-American, unless you’re rich.
But with MS, with disability or with aging, asking for and accepting help are important skills we all need. I’ll write about accepting help another time – It’s my favorite topic – but for now, I just want to say it’s like accepting anything else. We have to grieve our losses, recognize our needs, then accept and adapt.
It will all work out.
To connect with other people living with multiple sclerosis join our MS Facebook Support Group.
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