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.
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.
ReplyDeleteSo inspiring.... Thank you Marie.
ReplyDeleteWonderful 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.......
ReplyDeleteDEar Friend, It may be cyberspace but we are out here and we hear you.
ReplyDeleteI 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. :)
ReplyDeletewonderful read, Marie - thanks so much for sharing :)
ReplyDeleteRead the book "Potty Mouth", strange title, true memoirs of a woman living with MS, her trials and tribulations.
ReplyDeleteFriends 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!
Marie,
ReplyDeleteWe 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,
Maris
I'm married, but can still use every word you said. Thanks
ReplyDeleteThank 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.
ReplyDelete