Migraine Moon

I'm in the midst of a series of migraines that don't respond to medication, not even the injection that I save for the worst. So I'm hoping this post makes sense, but if it doesn't you'll know why.

In my last post was a link to an article I found on the website, Spirituality and Health Magazine. The article, an interview with Brene Brown, interests me because it's about vulnerability.

Though the focus of the interview is not on people with chronic illness, I think anyone with a mental health issue that is difficult to resolve, or pain that won't go away, or a disease that turns life upside down, needs to learn to live with vulnerability. And one aspect of vulnerability is shame.

We feel ashamed when we can't perform up to a standard we used to hold ourselves to, or that we imagine others hold us to. We feel ashamed because people our age are out there accomplishing things and it's all we can do to manage our condition. There's shame in being the one that has to renege on a promise to participate in a meeting or outing or group activity. There's shame in trying to participate because maybe this once we'll feel well enough to stay, but having to leave early anyway.

I could go on. But whether we suffer with depression or chronic pain or a disfiguring illness or schizophrenia or addiction or a debilitating condition, we probably deal with shame. Brene Brown's interview, here, talks about shame and how it interferes with relationship. Since the isolation of chronic illness is already a problem, it seems important to understand more about things that keep us from getting close to people.

That can sound intimidating when we're suffering, the idea of connecting to someone else when we barely have the energy to be with ourselves. But here's an example of a way to connect within vulnerability:

My brother, whose photos you see in my posts, gets migraines semi-regularly. He was up and in pain one night recently and wandered out into the cool night seeking relief. He saw this moon, got his camera and took the photo. He calls it "Migraine Moon."

Photo by William Marsh

He told me about the photo in a recent phone conversation. What a neat connection, and it came out of his vulnerability, his pain, which he then thought would fit a post on my blog. It does. And I'm still in pain, thought I couldn't write much today, but am so inspired by the article I read and my brother's example of reaching out, that I've written a much longer post than I thought I could manage today.






Thank you for reading my blog. You can comment below or email me at carold.marsh@gmail.com.

Resource: Brene Brown on Vulnerability, Shame and Intimacy

At the end of my previous post, I wrote that I hoped my sharing some thoughts and feelings that don't ordinarily see the light of day might help others. I know that sharing feelings helps me. As the 12 Steps saying has it, a burden shared is half a burden.

This morning I found a web site (Spirituality and Health Magazine) I've not seen before. I'll study it for a while and then get back here with thoughts and ideas about it, but for today I want to link you the article that caught my eye.

It's an amazing interview with more than enough to reflect upon and learn from to justify its own set of posts. But those will come later. To whet your appetite, here is a quote that comes early in the interview. And it just gets better.

 "There are two things they [those who Brown calls 'wholehearted'] shared in common. The first is a sense of worthiness -- they engage in the world, with the world, from a place of worthiness. Second, they make choices every day in their life, choices that almost feel subversive in our culture. They are mindful about things like rest and play. They cultivate creativity, they practice self-compassion. They have an understanding of the importance of vulnerability and the perception of vulnerability as courage. They show up in their lives in a very open way that I think scares most of us."

Here is the link to the interview:

 Brene Brown: How Vulnerability Holds the Key to Emotional Intimacy

There are two things they shared in common. The first is a sense of worthiness—they engage in the world, with the world, from a place of worthiness. Second, they make choices every day in their life, choices that almost feel subversive in our culture. They are mindful about things like rest and play. They cultivate creativity, they practice self-compassion. They have an understanding of the importance of vulnerability and the perception of vulnerability as courage. They show up in their lives in a very open way that I think scares most of us. - See more at: http://spiritualityhealth.com/articles/bren%C3%A9-brown-how-vulnerability-holds-key-emotional-intimacy#sthash.pony2ys6.dpuf

Thank you for reading my blog. You can comment below or email me at carold.marsh@gmail.com.

There are two things they shared in common. The first is a sense of worthiness—they engage in the world, with the world, from a place of worthiness. Second, they make choices every day in their life, choices that almost feel subversive in our culture. They are mindful about things like rest and play. They cultivate creativity, they practice self-compassion. They have an understanding of the importance of vulnerability and the perception of vulnerability as courage. They show up in their lives in a very open way that I think scares most of us. - See more at: http://spiritualityhealth.com/articles/bren%C3%A9-brown-how-vulnerability-holds-key-emotional-intimacy#sthash.pony2ys6.dpuf

There are two things they shared in common. The first is a sense of worthiness—they engage in the world, with the world, from a place of worthiness. Second, they make choices every day in their life, choices that almost feel subversive in our culture. They are mindful about things like rest and play. They cultivate creativity, they practice self-compassion. They have an understanding of the importance of vulnerability and the perception of vulnerability as courage. They show up in their lives in a very open way that I think scares most of us. - See more at: http://spiritualityhealth.com/articles/bren%C3%A9-brown-how-vulnerability-holds-key-emotional-intimacy#sthash.pony2ys6.dpuf

There are two things they shared in common. The first is a sense of worthiness—they engage in the world, with the world, from a place of worthiness. Second, they make choices every day in their life, choices that almost feel subversive in our culture. They are mindful about things like rest and play. They cultivate creativity, they practice self-compassion. They have an understanding of the importance of vulnerability and the perception of vulnerability as courage. They show up in their lives in a very open way that I think scares most of us. - See more at: http://spiritualityhealth.com/articles/bren%C3%A9-brown-how-vulnerability-holds-key-emotional-intimacy#sthash.pony2ys6.dpuf

There are two things they shared in common. The first is a sense of worthiness—they engage in the world, with the world, from a place of worthiness. Second, they make choices every day in their life, choices that almost feel subversive in our culture. They are mindful about things like rest and play. They cultivate creativity, they practice self-compassion. They have an understanding of the importance of vulnerability and the perception of vulnerability as courage. They show up in their lives in a very open way that I think scares most of us. - See more at: http://spiritualityhealth.com/articles/bren%C3%A9-brown-how-vulnerability-holds-key-emotional-intimacy#sthash.pony2ys6.dpuf

25% Improvement

Earlier this summer I posted twice (here and here) about a new treatment that might improve the migraine pain.

The first post, on July 27, shared some startling feelings I had when contemplating the possibility that a new treatment (occipital nerve block) might give me a more normal life. The other, a few weeks later, shared a strong desire to be cured forever because the pain was sometimes just too much. It wasn't easy admitting, in the first post, that I had these strange feelings. I felt more than a bit ashamed of myself. And then, a few weeks later, I'm writing about feelings just as strong, though opposite.

What a roller coaster.

The update is that the nerve block has improved my quality of life by, I figure, about 25%. It might not seem like much, but it actually feels like a lot. I can hold my head up for longer and with a lot less fatigue and pain. Although the migraines themselves have not improved, eliminating the pain at the back of my head has made me more comfortable in general and resulted in better stamina as well as better ability to manage the migraine pain. What a relief. I am grateful.

I have no worries or fears like those I shared in the July 27 post linked above. I'm excited that maybe I can be more social. I'm ambitious to do more writing than I've been able to do. I have plans to begin talking to others about some sort of freelance work. Now, I know some of this may be premature, so I'm trying not to get too excited and I'm going to take it slowly. But it feels good to have some hope of a freer life.

Photo by  William Marsh

 We often have thoughts and feelings that we'd rather not bring into the light for others to see. We feel ashamed of ourselves and hide who we are. Yet the human experience is such that all of us have darker sides we're not proud of and that we think set us apart from other, nicer, better people.

One of the reasons I write this blog is to be honest about life and who I am in the midst of it. I dare to hope that others will relate to some things I say and may even feel comforted to know they're not alone.




Thank you for reading my blog. You can leave a comment below or email me at carold.marsh@gmail.com.

Ferreting Out Those Hidden Blessings

Four or five times a year I have a period of many days with a particularly bad migraine that just won't go away. Wednesday through Saturday of this week made one such period.

People with chronic illness of any sort -- fibromyalgia, depression, diabetes, rheumatoid arthritis, schizophrenia -- experiences these particularly difficult times as part of having the disease. And we know how difficult it is to get through them. Having been through one, I'd like to write today about finding the (admittedly really hard to see) blessings or positive things present in the awful.

Part of the inspiration for this post came from here, a blog I read often: Migrainista. She is blogging about chronic migraine and fibromyalgia, both "invisible" illnesses, but I think all of us can relate to her list about what it's like to handle the realities of a chronic illness.

If we want to not just survive but learn from and grow within our chronic illness, it helps to remember that there are good things about our lives. I'm not saying we sit up and smile and hop out of bed, ignoring the pain we're in. This is not one of those stiff-upper-lip things, nor is it about what we hear all too often, that we're letting the illness get us down, or if we just [fill in the blank] we will feel better.

This is about having the courage or sheer doggedness to remember the good. Here's my list of blessings from the past four days:

1. My husband kept me well supplies with watermelon chunks and sympathy and humor.

2. I got a letter from a friend, who stays on the look-out for new info on migraines, with an article that told about a possible new treatment.


3. My little dog was especially cuddly and quiet.

4. I developed a new passion: a British television show called, "Sherlock." I don't watch TV or video when I'm in pain, I listen to shows like Seinfeld and The Office because they're verbal and funny. Sherlock, not funny but suspenseful, has great story lines, inventive plots, intelligent writing and, best of all, really good music and sound editing. 



 Today I'm blogging, doing wash, baking biscotti, and making myself rest between activities. I'm glad the pain is over, and I'm grateful for small blessings.


Thank you for reading my blog. You can comment below, or email me at carold.marsh@gmail.com.

Thoughts on Ferguson -- What a Suburban Kid Learns About Police

I grew up in upper-middle class suburbia. I learned to read in the sixties, from books created precisely for kids like me: relatively well-off, white, well-fed and economically secure. I never thought that this life, the one I lived and that I saw reflected faithfully in books as soon as I began to read, was anything other than representative of all of America.

Sometimes the kids in the books had trouble. Their puppy was missing or their kitten caught up a tree, or they got lost in a neighborhood they didn't know well. They always found a policeman who, kindly and helpful, would rescue the pet or help the kid find her way home.

Every once in a while a policeman (they were always men, back then) would come to our classroom and tell us about never getting into a car with a stranger and how to call them on our phone in an emergency. We suburban kids were taught that the police were our friends, adults we could always turn to when we were in trouble. We knew them to be kind, to have our best interest at heart, and -- maybe most important -- to be just like us.

When I moved to Washington DC in 1990, at the age of thirty-five and having lived the same sheltered (though I didn't know it was) suburban life all my years, I worked at a residence for homeless pregnant women, all of them black, poor, and hungry for most of what I had forever taken for granted as simply there for me. For all of us.

The culture shock I experienced warrants a long essay of its own. But right now I'm thinking about how shocked I was to find out that these women distrusted and disliked police. As much as anything else that turned upside down my complacent, blinkered view of life in this country, the realization that these women did not and could not trust those I'd learned to count on implicitly shook me to my core.

Now I watch and hear people who grew up a lot like I did talk about Michael Brown and the policeman who shot him. And though I deplore their lack of understanding of the realities of being black and poor in America, though my frustration just about explodes when I hear them reflexively defend the officer while casting all the doubt they can on Mr. Brown, I know where they're coming from. I have been there.

The difference for me is that I got to leave there for the discomfort of others' reality and do the most radical thing in my life: listen and allow myself to be taught.

I'm no saint. It took me years to stop fighting and resisting while my ivory tower was demolished. Then it took me years to learn how to actually listen. These years during which the patient ones and the not-so-patient ones were willing to teach me despite my angry denial were painful in the extreme. But today they seem a quiet and achingly slow miracle of acceptance, good faith and welcome.

The kind of acceptance and welcome so frequently not offered to the very ones extending it to me.

The kind of acceptance and welcome now being withheld from the parents, family, friends and race of Michael Brown.

 And that's what breaks my heart.


Thank you for reading my blog. You can leave a comment below or email me at carold.marsh@gmail.com.