Friday, July 20, 2012

The Power of One

Marie Cooper
Writer, MS Renegade
I taught childbirth preparation for many years at our local hospital and spent much class time discussing how to manage pain. I emphasized how it was important to have as many skills as possible in your virtual tool box, so when one wasn’t as effective anymore, you could reach for another. But most of all, I would tell the couples in my class over and over, that one of the most basic and effective tools in managing pain was simply having another person there to offer support and caring.

Those lessons that I once taught have actually been helpful to me all these years later in dealing with the physical and emotional pain associated with MS. Unfortunately, that basic strategy, having another person to share the load, is not always available to me. 

It can be hard enough being single under the best of circumstances. But when you throw a chronic illness into the mix, the words “challenge” and “lonely” acquire a whole new depth of meaning.

I like to remind myself there are definitely some plus sides to being a singleton.  I‘m independent. There are never any quarrels over money or what to watch on television or what is for dinner. I have only myself to answer to and I usually agree with myself. And when I don’t, I simply tell myself to shut up and that is the end of it. I don’t even have to be polite to myself.

On the other hand, it can feel overwhelming to be responsible for everything. It is endless work coordinating rides to medical appointments. It is upsetting to struggle through painful or tedious procedures with no one to hold my hand. And, while it is a luxury of singlehood to be able to stay up till all hours reading without disturbing anyone, it is those middle-of-the-night tidal waves of anxiety that can knock me off my feet because I feel so alone.

Those dark moments are part of the human condition, I think, no matter what. But there are things we can do to help balance them. We can develop a sort of virtual tool box, much like the one I used to talk about in my childbirth classes.

Friends: One of the most important things I can do is to foster my friendships. With a chronic illness, it is so easy to lose touch with friends. As I get more immobile, I find I isolate more because I don’t want to be a burden. To me, it feels like so much work to do something as simple as going out to dinner, so I tend to decline invitations. But, my friends don’t look at spending time together as though it is work. Those who can are happy to help. They remind me that they actually like my company.  It is hurtful to them when I make assumptions and limit the opportunities they have to help me out. Plus, while physically it may be hard to get out, a change of scenery often helps lift my mood. And you never know who you are going to meet along the way. I have finally accepted the fact that Prince Charming is unlikely to turn up spontaneously at my front door.  Instead, I might actually have to go out with my eyes peeled.

Revise personal expectations: In my former life I outdid Martha Stewart in terms of type-A, every-detail-precise entertaining. I have had to force myself to reassess my standards. This hasn’t been easy. It just about chokes me to even type that sentence. But, again, people come over to see me, not to see if the underside of my antique dining room table has been hand-rubbed with beeswax.  (Yes, I actually used to do that. Hey, I never said I was not insane.) While it makes me want to cry that I can no longer whip up a multi-course luncheon with 10 minutes warning, most of my visitors are more than happy with store bought food. Or with a glass of water. Or with nothing at all but a lovely chat. And they prove it by coming back again and again.

Make serenity an objective: Through painful experience, I have learned that peace of mind is a choice. Knowing this does NOT mean I am always in a peaceful state, however. For me, it requires constant work, constant practice, constant reminders. So I read encouraging literature, I put affirmations on little slips of paper and tape them to my laptop and desk, I meditate to slow my speeding mind to a low-level buzz and I try to keep a positive perspective on things. All easier said than done, but the key word here is “try.”

Nothing can take the place of a fulfilling, loving relationship with one special person. But that does not mean our lives have to be empty otherwise. I have found that by keeping the focus on maintaining my health and keeping an open mind, I can indeed manage well, even though, right now, I am only one.


  1. Thank you for sharing Marie. I will keep in mind your wisdom regarding friendships...because I too struggle with not wanting to be a burden when my friends invite me out. Be Well.

  2. So inspiring.... Thank you Marie.

  3. Wonderful to hear of your strength. I have always been a strong person and one of the hardest things I have had to deal with in tackling MS is accepting I need help from others. I have also had to show what I initially felt was weakness on my part during painful relapses, painful medical studies and even worse painful daily injections and reactions. I realize at times its not weakness, but rather being human. However, in all honesty, it is still difficult for me to not be the strong one all the time. It's work in progress.......

  4. DEar Friend, It may be cyberspace but we are out here and we hear you.

  5. I am so pleased and humbled that my simple posts resonate with so many of you. It is so helpful to feel we are all in this together. :)

  6. wonderful read, Marie - thanks so much for sharing :)

  7. Read the book "Potty Mouth", strange title, true memoirs of a woman living with MS, her trials and tribulations.
    Friends are wonderful and most strangers. If I'm having trouble getting into my car, for example, I'll ask a friend, or even a stranger, to help put my right leg in. We usually end up laughing, but I've pretty much gotten over trying to save my dignity in that kind of situation. Keep your spirits up...loved your story!

  8. Marie,

    We can all SO relate to what you say. I'm lucky to have the best partner (for me)in the universe, but everything else you say is true for all of us. I also had to go through a switch from super-mom, super-teacher, super-home maker, etc, etc. After the initial anxieties, panic, fears, questions that come with dx, I also MADE THE DECISION to take everything on a different plane. I started meditating daily, found my inner self, peace, serenity and to take life in a very Zen manner: as it comes; not to fight with it, to flow with it.

    Peace & Serenity,

  9. I'm married, but can still use every word you said. Thanks

  10. Thank you. I really struggle some days. I also have Lupus and Vasculitis. The heat has been such a burden. I need a local support group.