About Me

My photo

With a Master of Fine Arts in Creative Nonfiction degree (Goucher College, August 2014), I am looking at a new phase in my life. From 1992 to 2009, I served as Founding Executive Director of Miriam's House, a residence for homeless women living with AIDS. I left this position when Chronic Migraine Disease overtook my ability to do my job. Now I hope that a writing career will both accommodate the migraines and give me a creative, productive outlet. And soon, September 4, I will launch my Inkshares author page in a bid to hit the 1,000 pre-order goal in 90  days. The book I want to publish is "Nowhere Else I Want to Be," a memoir of ten of my years at Miriam's House.

09 October 2010

Feeling Guilty for Our Pain

This week a thought arose in me without warning, bubbling up and surprising me because I thought I'd finished with such feelings:

"What is wrong with me?  What am I doing wrong?"
It was on Friday morning, after I'd lost most of Wednesday evening and then all throughout Thursday to Friday morning to a really, really bad migraine.

I call them "crashers", these migraines.  But that is not the point of this post, because I'd like to explore the feelings of guilt that were in me when I faced Friday still in pain.  As I said above, it caught me by surprise, even though I know that it is typically such unguarded and vulnerable moments that have special power as teachers.

The guilt was about two things that I can see at this point, now that it is Saturday morning and I am blessedly free of that pain.  The first was about my body's inability to handle strong medications; the second was about the many tasks not getting done while I lay in pain.  I had begun a new, prophylactic medication called Lamictal on Sunday after having tried several others in recent years that proved too strong - even at the smallest doses - so that I could not tolerate the side effects.  I was afraid this headache was a result of the Lamictal.  And the laundry was sitting, still dirty, beside the clothes washer, I hadn't been grocery shopping, etc.

Aside from those details, what about guilt and pain?  Why do we have feelings of guilt about something that is absolutely out of our control?  You may recall from other posts (28 September, 2 October) that one of the ways to handle chronic pain is to choose one's reaction to it.  That, I believe, is in one's power: the pain itself, most often, is not.  Once we have chosen a constructive, proactive and management-type reaction to the pain, why the guilt about having it?

This is a huge subject - spiritually, socially, metaphysically, emotionally - and I do not at all think that I can explore and explain what smarter minds than mine have been considering for ages.  So I am not trying to write a treatise, but I am wanting to explore and work with the guilt that can go along with chronic pain in this and the next few posts.

There are some fairly simple answers to the emotional component.  Many a parent or responsible adult - myself included - have impatiently indicated to a child that their pain or upset is not real: "Oh, you're not really hurt that much."  "Just hush."  "I'll give you something to cry about."  It simply is not possible to respond to each moment in the emotional roller coaster of a child's life with complete sympathy, and so sometimes the message is that the amount of our pain is somehow our fault.  The adult version of this is, "Just talk yourself out of the pain."  "You seem fine to me." 

Additionally, there are many things in life over which we have assumed control - or, at least, the illusion of control.  We have overcome odds in order to complete our education, or to start a new business, to be in recovery over our addictions, to get out of a destructive relationship, living space, etc.  We begin to believe what our society believes, that if we only apply ourselves, or really want something, or stop being self-indulgent, or just say or think the right thing, we can control all situations.  Life has given us lemons from which we have made lemonade, and we are justifiably proud of that.  It's just that our ability to move mountains becomes puny and ineffective when it comes to stopping chronic pain.  And so we feel guilty.

I recently found a website (thanks to a suggestion from my sister, Joan Sparks) in which there is a page devoted to 12 Steps of Living With Chronic Pain.  Based on the 12 Steps of AA/NA, these steps are wonderfully full of wisdom that takes the guilt - our own and that imposed on us by others - and then clearly indicate where we do have power, where we can grow in emotional health.  I will not repeat all the steps here because the link above taking you straight to them, but I do want to comment on several of the steps in the context of this post.

The second step begins with the words, "I refuse to feel guilty ..." and I just love the strength in that.  Although it surely takes a while to get to the point of being able to internalize and actually believe them, these words go directly to the heart of where we do have some power.  After the first step focuses on our powerlessness over the pain, the second step heads straight to one of the most debilitating points of our emotional reaction to being in chronic pain.  Then it goes on to use the phrase, "... that limits but does not stop my life."

This is encouraging to me.  Yes, my life is limited: Tim and I had to cancel dinner with dear friends on Thursday evening, and that was only the most recent example of what is a regular occurence for me and for us.  Plans with me are tentative because the migraines limit my ability to be up and moving.  But that does not mean I never make plans, and I am grateful in a way that is also beneficial to my spiritual life when I can do the simple things that I should guess are taken for granted by folks who do not live with chronic pain.  Being able to walk a few blocks to the grocery store to pick up fresh fish for dinner is a joy to me.  Would I notice the way the sunlight plays on the tree leaves and the way the their bright green makes beautiful contrast with the blue sky if this were something I could do every day whenever I wanted?  I think not, knowing myself.

I like the realization that while my life is limited by pain it is not stopped by pain, and actually take some pride in knowing that there are often times that I am in pain but choose not to cancel plans.  Furthermore, I can choose, to the best of my physical ability at the time, to act as though I am not in pain.  My best friends can always tell anyway, but I do believe I fool most of the people most of the time.

So the laundry takes 4 days to get done - it IS getting done.  So we eat a lot of leftovers because I have learned to cook large amounts for dinner, not knowing if I will be able to cook the next day - I DO cook.  So I had to cancel dinner plans this week - I WILL get out today with Donna for a visit to LOOPED, our friend's new yarn store in DC.

If we can honestly say when the pain is too much and just as honestly rejoice when we can accomplish even small things, then we are enhancing our ability to live in a healthy way with our chroic pain.  It is not a matter of one or the other, and that is where I think it is easy to lose perspective.  It is both/and:  pain stops my life some days AND it only limits my life some days.  Knowing this helps me to take responsibility in my life, about which I will which in my next post.

I would love to hear from you.  Please use the Comment box, below, or write me at carold.marsh@gmail.com.

No comments:

Post a Comment