More on Michele Bachman's Migraines

It is tempting for me to read some of the "can she be President if she has migraines?" commentary about Ms. Bachman as yet another example of the stigma of migraine or the extra scrutiny that comes with being a female Presidential candidate.  And it may well be that such prejudices are behind some of it.

But I have just finished reading - actually, listening to, since reading and migraines do not mix - a book about John F. Kennedy (An Unfinished Life, by Robert Dallek).  Besides being a fascinating, well-written and detailed narrative about JFK's life, it is a revelation of his numerous health problems and how they impacted his life and political career.

JFK, his family, staff and friends lied and obfuscated about his Addison's disease, intestinal difficulties, chronic back pain, and prostate problems during the whole of his political career.  The very real fear was that his life in politics would be over if the facts of his health and/or the amount and type of medications he was taking ever leaked out. Indeed, the book raises questions and then speculates about how the pain and the medications may have influenced his actions and decisions as Senator and as President.

Had I not been reading this book at the time of the Michele migraine discussions, I would likely have allowed my comments to devolve into decrying the deplorable prejudice - against migraineurs, against women in and with power - evident in some of what I saw.  I have enough experience on my own and have connected with enough women with migraine to be sure there is some political hay-making going on while the spotlight shines.  I recall being infuriated, for example, by the snide and sly coverage and questions asked of Hilary Clinton during her run for Presidential nomination.  So it is out there, and I know it, but that can be the subject of another post.

What I also know is that it is all too easy to cast ourselves as victims.  Being a migraineur myself, I could cite my own and my cyber friends' examples of migraine bias and the painful ways it has affected us.  To do so in the light of what has been said about Ms. Bachman would be justifiable and understandable.  But sometimes it is just not right to revert to the constant, if true, refrain of victimhood.  Sometimes it just feels right to be honest about how complicated it all is.

This is a blog about how living the limited life of chronic pain has influenced my spiritual life, and vice versa.  In the case of Michele Bachman's migraines, the chronic pain encourages a dyspeptic monologue about migraine bias, while the spiritual living encourages a step back and a casting of a glance inwardly to that place of clear-eyed wisdom that is so attractive to me.

Both are real.  And balance is what I desire, along with the peace that accompanies it, so I am compelled by my desires and my own blogging to be equitable about this.  It seems inadequate, even to me and even as I write it, though.  Aren't we supposed to take a stand and stay by it?  Don't people decide what they think about things and then trumpet incontrovertible opinions to their world?  Fence-sitters are not respected, after all.

Oh well.  With apologies to all of us who want certainty and facts and categorical statements on which to rely, here is what I can say about Michele Bachman's headaches:

It may be that her migraines cause her little enough distress that she can manage a high-powered and influential career.  It may be that the seriousness of her migraines are being shielded - a la JFK - from public view.  It may be that persons with fear of and prejudice against powerful women are using the reports of migraines to derail a career that frightens them.  It may be political.

All I can write with any certainty is that I hope - in case the migraines are truly and often debilitating - Ms. Bachman is realistic and self-honest enough, that her handlers, friends and family are brave enough, or that the terrible effects of frequent migraines become debilitating enough to end her run. 

And I hope - in case the migraines are easily managed and inconsequential - that Ms. Bachman continues her career to the best of her ability, attentive to the noble and honorable possibilities inherent in a public service career.

More particularly, I hope and pray that she allows pain she has suffered - from migraine or whatever - to bring her closer in compassion to the pain being suffered now by people in America.


Next Post: Some discussion on stepping away from victim status and the power of honest vulnerability.

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

Michele's Migraines

Politics aside -- I being liberal of the bleeding-heart-on-the-sleeve kind -- I quite naturally have a lot of empathy for Michele Bachman.  Living with migraine pain gives us common ground.  Again, politics aside -- she being conservative of the I-talk-alot-about-compassion-because-otherwise-it's-assumed-I-have-none variety -- I also feel some admiration for her.  Campaigning for nomination for president is rigorous in the extreme, but to do it with WITH migraines?  The mind boggles.

Of course, there is very little information from her about the migraines, their frequency and severity, what meds she takes, how she manages pain, when the alleged hospitalizations occurred, etc.  I'm no political pundit, but I agree with Judith Warner's opinion in the July 21 NY Times: leaving the information to speculation isn't helping. 

Finally, I do not assume that my experience with migraines, which caused me to leave my well-loved work at Miriam's House in 2009 and continues to render me unable to work, gives me any right to judge Ms. Bachman.  Migraine is an idiosyncratic disease, difficult to treat partly due to the varied ways in which it manifests itself in different people.  And it is not very well researched as of now. 

All that being said, and given that I live a greatly circumscribed life due to painful and chronic migraines, I cannot imagine how Ms. Backman could even begin to conduct a nomination campaign if her migraines are, as alleged by The Daily Caller, "frequent" and "incapacitating."  If she is having a level of pain and frequency that still allows her to run for the Republican nomination, then until I hear otherwise, I have to think that her migraines are wimpy, unremarkable things that are fairly easily managed by medication.

That makes me envy her.

All that being said, and given that I forced myself to work a good five years with ever-worsening migraines because I loved my job and could not imagine giving it up, I know the toll that ignored migraine episodes take upon health, vigor, mental acuity, memory, and patience.  I know the level of self-delusion required to maintain the fiction that one is well and functioning at top capacity.  If Ms. Bachman is deluding herself in this way and trying to hide her difficulties from others as well, I have to hope that someone tells her no one else is fooled, and that it will catch up with her in a big way some day.

That makes me pity her.

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

Remembering God

"If you pass by the gardens of those who remember God, sit down happily."  Prophet Muhammad

I have realized that I need to take especial care of my health and my spirit during the month of July.  The heat and humidity of Washington, DC are again taking a toll on me, as the migraines both increase and become harder to bear.  And - what is good news albeit poor timing - we'll be moving by the end of the month.

So I shall take the month of July off from this blog.  It is essential that, in the midst of the packing and planning, ill health and pain, I ensure that I have the space and time to sit down happily in the gardens of God.

I will begin to post again during August, 2011.

May you enjoy tranquility and gentle challenge this month.

Knowing Pleasure

I watched Eat Pray Love twice this week.  Well, once I watched when my head wasn't bad, and once I listened, when it was.

The hot, humid summer months have become increasingly difficult these past two years, making me feel sick, extra tired, and less able to handle the almost constant pain in my head.  One of the things I do as part of pain management is listen to movies.

There are several memorable quotes from Eat Pray Love, one of which has stayed with me and caused me much reflection.

Liz is sitting in a barber shop in Rome with her new Italian friends.  During an animated conversation full of graceful, gesturing hands, lilting voices, musical vowels, and hair clippings, this quote emerges:

"You Americans know entertainment.  You do not know pleasure."

I usually find that when an idea sticks with me, there is good reason for it - reason that I find within myself.  So during the past several days, as I re-play the movie and think about entertainment vs. pleasure, I look at my life and, in particular, my pain management practices.

I try to steer clear of dichotomies because they tend to create opposition: to talk about the values of pleasure vs. entertainment as though one concept might vanquish the other is a fruitless conversation that misses the point.  It's more my task to understand why the words have settled into my mind than it is to decide which is better.  So here is a rough approximation of my internal dialogue this week:

"Do I know entertainment better than I know pleasure?"
"Yes."
"But entertainment is one of the things that gets me through the rough days.  Entertainment: listening to NPR or a movie or Seinfeld.  Yes, it's passive, but when I am in pain, passive is what I need."
"OK, then, gotta have entertainment.  It's not an either/or proposition."
"Fine.  So where does pleasure come into my life?"
"Walking my dog, cooking and eating, listening to music or meditation CDs.  Being with my husband.  Keeping up with friends and family.  Knitting."
"How much pleasure am I truly gleaning from these activities when I am also in pain?"
"Not so much.  As a matter of fact, it's more like I am getting through them in anticipation of being able to rest and turn to the entertainment."
"Then the question is not entertainment vs. pleasure, it's how to get more pleasure - be more present to - the pleasurable activities."
"Gratitude."

Gratitude.  That's the simple answer, the one that springs instantly to my mind.  It's part of being present to the moment, the Now.  Or maybe being in the Now - presence - is part of gratutude.  Or maybe it's really that they go magically hand in hand.

I can walk Sierra (our rat terrier) realizing vaguely how good it feels to stretch my legs while otherwise lost in thought or just getting through the walk because my head feels so badly.  I think of it as a pleasurable activity, but how much pleasure do I actually get from it?

I can sit down for a meal and rush through it because it's hard to hold my head up.  But last night, when I put the homemade pizza on the table and focused on it - no radio, no magazine, no planning for what I'd do next, no rushing - I experienced the pleasure of the textures, flavors and nurture of that simple meal; I experienced gratitude for the abundant goodness before me. 

When I walk or eat with presence, gratitude wells up in me unbidden.

I have written before about inhabiting our bodies: being fully, quietly present to our selves and the moment.  Out of this arises gratitude, and out of gratitude arises pleasure.  Deep pleasure, the kind that does not seek entertainment, the kind that is sufficient in and of itself. 

Here's the magic: pleasure itself turns out to be a great pain management tool.

For this, I am so grateful.



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

Wounds, Stigma and Compassion: 30 Years of AIDS

The 30-year / 30-million dead AIDS anniversary has me in a gut reaction that I cannot name.  It's so complicated: there is the deep, deep sorrow over the many women I knew and loved at Miriam's House, now passed away; the horrifying numbers (30 million world-wide); my anger about the ravages of the disease itself and the ravages of the stigma, judgment and shame attached to it.  But what I want to write about today is a view of AIDS from the perspective of living with a chronic, painful condition.

No, I am not equating living with migraines to living with AIDS.  But today, as I mourn 30 years of this epidemic, I am very aware of how much more difficult stigma and shame make living with a chronic illness.  There is - as with anything that others cannot or will not understand - some stigma attached to living with migraines ("You are just letting the pain have too much power over you."), and the consequent unemployment ("Why don't you at least work part time?"), but it's really not that bothersome to me - I am able to note it and move on.

However, having lived and worked with women living with AIDS at Miriam's House, I have experienced as close to first-hand as is possible - short of actually having AIDS myself - the stigma, judgment and shame that go along with the disease.  And I can tell you this: it makes so very problematic the living with pain, the chronic reality and the endless doctors/hospitals/ERs/medications.  As if living with AIDS weren't problematic enough in and of itself.

I experience anger all over again as I remember (names are changed):
* Alexa, invited to a family reunion in North Carolina as long as she would agree to stay in a motel rather than with family, as everyone else was doing;
* Viola, allowed to live with her mother but forced to eat with plastic utensils and paper plates and cups so as not to contaminate her family or their dinnerware;
* Victoria, who moved to the States as a 12-year-old when her mother realized that the health care in her native Africa could not keep her alive, but whose aunt and uncle kept in a small room just larger than a closet, isolating her from themselves and from even a semblance of normal teenage life;
* Terri, who was terrified that her family would learn that she'd contracted AIDS because she'd seen how they treated a cousin;
* The women with whom I sat for long hours in hospital emergency departments, and who - had I not been there to advocate and agitate for them - would have been shunted aside while care was given to others.  (This, I came to believe, had more to do with their status as poor African Americans on Medicaid than with their disease, but it was hard to distinguish and just as hurtful whatever the reason.)

There's a lot more to tell, but this post cannot hold it all.

I imagine how miserable I would feel if I had to hide my illness from friends and family; how devastating it would be to live in shame imposed from without yet intensified within; how I would struggle with judgment even as I tried to accept the limitations of the migraines. 

And I remember, as I do so often, the incredible grace with which these women lived with their illness:
* Alexa, who never failed to ask me if I had a headache and who, with genuine love and concern, prescribed rest and stress-reduction;
* Viola, who eventually moved out and into her own apartment, proceeding to care through her final illness and death for the mother who had handed her those plastic utensils.
* Victoria, ill and nauseated and half-conscious in her hospital bed, asking her visitors how they were and making sure they all had a place to sit;
* Terri, with whom I spent long evenings watching gospel music shows and comic movies while being entertained by her running commentary;
* And the women in the ERs, watching me tire and telling me to go home despite their fear of being left alone in so vulnerable a state.

What am I trying to say here?

I do thank God that the stigma of AIDS is - at least in this country - not as bad as it was 20 or 30 years ago. Yet still it exists here, and is virulent in other countries. 

We all, to one extent or another, experience heightened awareness and even fear in the face of what appears to be other than normal to us.  I suppose this could be some sort of ancient survival mechanism left over from when most of the "others" we encountered might kill us.  Yet our evolution as a species has brought us to a place in which we can simply note the immediate and unbidden reaction, allow it to pass, and take a second look into our own hearts and into the heart of the different other.

What am I trying to say?

There is no different other.  There is only we.  There is only the human state, with its fears and isolation and wounds.  Perhaps my wounds are more visible than yours; perhaps your wounds are more socially acceptable than mine.  No matter: we are all wounded, we all hurt.  In that, we are no different.

We are no different in our need for compassionate understanding and forgiveness.  We are no different in that, given compassion, we blossom, we become more able and eager to extend compassion to others.  We allow that within us which we have hidden through shame and fear to become forgiven and thus transformed.  We become less inclined to stigmatize differences, and more ready to celebrate similarities.

We discover that our wounds and shame become transformed into loving compassion for self and others: still wounds, perhaps, yet also widely opened doorways.  But do not take my word for it: go make a friend of the one you consider the other.  Allow her to teach you.  Give your heart permission to let him in, to show you his humanity and how similar you really are.  Extend your hand just a small distance toward her and experience how generously she - however long it takes - reaches out to grasp you. 

Allow her to teach you that we are all the same.


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