Facing disability and finding peace

My mother, Caroline, has Multiple Sclerosis. She was diagnosed 23 years ago, after visiting various doctors over a period of time, complaining that something was wrong. She would say to us “I think I’ve had a bit of a bug”. Once the medics agreed that there was indeed something wrong, they suggested three possible eventual diagnoses, of which MS was the most preferable. So, surprisingly, it was a relief when the tests finally confirmed that she had this condition.

Caroline’s MS is primary progressive, which means that it has generally just got worse and worse over the past couple of decades. She feels ill, fatigued and in pain all the time, and her mobility is severely impaired. As a result, she’s unable to do very much at all; leaving the house is for short drives or simple visits to my house for a change of scenery. She does manage, however, to live independently, with a good deal of help and the knowledge that my house is just down the road and someone can come in an emergency. For someone who used to be extremely strong and active, going for long walks, gardening and volunteering, life changed drastically.

This morning I asked Caroline what her MS actually means. We talked about how it has changed her life and the things she can’t do, and also the fact that she has learned to sit still, to spend time reading, learning and just being. She described to me where her feelings about MS are, and what they are like.

“It’s in my chest, and it’s a comfortable, warm,safe feeling. It feels like peace; yes, I’m at peace with it”. She then described to me how, when sometimes it’s more difficult than usual to walk, or the pain is a bit more severe, she says to herself, “it’s OK, it’s just my MS”. She’s at peace with it, and the thought comforts her.

Such a state of mind hasn’t come overnight, or without effort. We didn’t talk about this now, but I know Caroline has asked “why me”, and mourned the loss of her mobility and independence. I remember, five years ago, when she decided not to renew her driving licence at 70, how hard she had to work at accepting this loss. Sometimes, she pushes herself too hard at a task, or engages in conversation too long, and pays for it over the next few days in extra fatigue.

But this amazing lady, my role model and best friend, shows us that it is possible to live happily with a life-altering condition. She practices acceptance and gratitude on a daily basis, and is always interested and cheerful so people love to speak to her. Just by being herself, and by striving to live with joy on a daily basis while also having MS, she offers hope to anyone facing, or dealing with, a life-altering diagnosis “there is hope; life may be different, but it is still worth living”.