Shush-Writing

Hello! This is a different kind of writing for me. It is genreless, although I was definitely influenced by both creative non-fiction and poetry.  Basically, I decided to experiment with something out of my poetry comfort zone, as I thought the experimentation might lead me to new insights about my pain. I do think the experimentation led me to include more rhythm in my piece that I normally do, and I was also pleased with how this piece represents the frustration I often feel about pursuing new, and often ill-defined, remedies. I was trying to represent the barrage of information, opinions, and attempts, I experience. As always, click read more for the whole poem.

Shush

By: Blog Admin

“Shush.”

I cradle my head in my hands, as if my hushed voice could lull the nerves burning in a band around my head.

“You must be doing something wrong,” they say.

 I tiptoe around my migraine, wearing earplugs to shield it from the clanging dishes or blasts of music. Icepacks on my forehead. No preservatives in my diet. Gluten free muffins, spongy and deflated, for breakfast.

“Shush.”

Pain flares.

“This is your body sending you a message,” they say.

Doubt and Hope

Hi, readers! I don't know about you, but one of my favorite books of all time is Jane Eyre by Charlotte Bronte. At one point, Jane is waiting for the answer to something, and she is almost wishing the answer doesn't come because "to prolong doubt was to prolong hope." Even though this quote doesn't directly relate to chronic pain, I have been thinking about it a lot lately. In just a few days, I will be switching doctors and going to a different clinic, where they are going to run some tests on  me and reassess my diagnosis.

I feel like Jane right now, like I would rather not hear the answer in case it's the answer I don't want to hear. This, of course is complicated by the fact that I don't know what answer it is that I want to hear. On one level, I think I would rather that their tests find something than that they don't. That might seem strange, but part of me is tired of having this unexplainable pain that no one can treat and that no one else can see any evidence of. I think that other people with chronic pain may have a similar problem. Most of us are like Jane, stuck in a place between doubt and hope, continually looking for answers, if not from one doctor, than from the next, or from the next chiropractor, or the next acupuncturist, or whatever the case is. It's a strange state to be in. Personally, sometimes I don't even want to let myself hope that I will be cured, because hope can be dangerous. Having hope means you can be let down. Yet, I can never quite stop myself.

And even though I've had people tell me I shouldn't be too hopeful, I don't think hope is wrong. I think we, as people in chronic pain, need hope. Hope can help us cope with pain. I think its more a matter of what our hope looks like. For instance, for a long time, I was living for the hope that I would grow out of my pain, and that was my main focus in life. It kept me from enjoying what was around me. So, I think hope can be good, but not when we let it control us. Too much hope can be as life-destroying as not enough.

New Poem- Especially Then

Hello, readers. As part of my own personal writing therapy, I decided to write a different kind of poem today. I'm not going to explain it much because I think the title and the poem speak for themselves. Let's just say that, even though I often write about societal biases and ignorance in the face of chronic pain, I am deeply grateful for those who are not in chronic pain and have yet done their best to understand and share in some of the difficulty of chronic pain. If you are one of those people, this poem is for you. Please click "read more" for the full poem.

Especially Then

For my Dad, for my Mom, and for Everyone Else who Tries

By: Blog Admin

I want you to know that I love you.

I love you when you look at me, with my flushed cheeks,

the picture of health,  and still trust me, believing

a monster, an illness you cannot see, lurks in my brain.

I love you, even when I snap, yelling and stomping my

foot like a child because you cannot see

the way the edge of the table glimmers in green or

the way the walls ripple—the way the world

looks through the eyes of a girl with advanced Chronic

Migraine Syndrome.

And I love you, even when

 pain drills a hole through

my head,  and all you can do

is hold my hand, trembling.
Even then.

Especially then.

I want you to know that I’m sorry.

New Poem-5 Senses of Migraine Auras

Hello, readers. Here is the poem I promised about my migraine auras. While you will probably get the idea from the poem, for those of you who don't know, an aura is when a patient experiences a strange sensation of some part before or during a neurological phenomenon, typically a migraine or seizure. These auras can include lights, sensitivity to sound, and well...my poem includes others as well. I only recently learned that it is rare for someone to experience auras in all five senses in a short period of time, so I though I would write a poem about what these five sense auras are like. I also have experienced other aura related symptoms not include here, such as memory loss, aphasia (difficulty remembering words/language), and loss of balance. I hope you enjoy this poem. 

5 Senses of Migraine Auras

By: Blog Admin

My throat prickles with

dryness, but I narrow

my eyes at the five feet of linoleum

between my chair and the sink. The

pain –my migraine—twists, a

chain coiled around my head.

I glance at the sink, but instead of

seeing muted steel, the sink shimmers with yellow

and green. A couple blinks, a shake of my

head, and the pain slices above my

left eye,  the lights dancing

in rhythm to the pain.

Resource Updates and a Quote

Dear Readers,

Hello! I am currently drafting and revising another poem. This one will be about the way my migraine auras alter my perception of reality, so stay tuned for that. I am also writing this post to tell  you that I just posted a couple of new resources for chronic pain patients. I found some awesome online tools to help chronic pain patients keep track of their symptoms, including a device by which patients can create “maps” of their pain, and I wanted to share these resources with you. Of course, you may find the new resources in the resource page of this blog, as well as in the previous blog post.

I would also like to leave you today with a quote I recently stumbled upon by Bob Dylan: “Behind every beautiful thing, there's some kind of pain.”

I think this is a quote that could be interpreted many ways, like most quotes. For me, this quote means that everyone in the world must endure pain, but also that pain can make something beautiful. I’m not denying that pain is hard to bear and is often very ugly, I simply think that pain is what so often pushes people to be better persons than they think they can be. For instance, chronic pain may inspire someone to a life of advocacy or help someone find inner strength he or she may not know he or she has. I have certainly seen this in my life, and I find it strangely comforting to think about how the most beautiful things are often products of pain.

A Good Day-A Poem

Hi everyone! Since I have written poems describing my chronic pain condition before, I decided to focus on the days when I don't have any pain this time. They don't happen very often, but when they do, they are beautiful. (Click on read more for the whole poem).

A Good Day

 By: Blog Admin

I open my eyes to greet the day and

freeze—

my head feels light

as cotton.

 I prod the side of my

face with a shaking hand.

Nothing—no pain at all. 

Short Synthesis Essay About my Semester!

My Dear Fellow Chronics and Allies,

Hello! The first stage of my project is complete. I would like to thank Dr. Woodard for being such a compassionate, patient, and helpful faculty adviser. His help has meant a lot to me. I would also like to thank Dr. Stewart, who will be advising the second phase of my project, in advance for agreeing to help me.

I have finished the short paper I was writing to complete this part of my independent study. In the essay, I discuss some of the theories about why reading and writing literature may serve as effective coping mechanisms for those with chronic pain. I also discuss some of the insights I have gained by writing and revising the five poems I wrote for and published on this blog. Feel free to read it!

Also, even though this phase of the project is done, I will probably still post on this blog, so feel free to check it out any time! I will also most likely be publishing my final paper when I complete the last credit of this course (probably in the fall).

My essay is copied and pasted below (I tried embedding it, but this resulted in some very strange formatting, so I will not be able to embed it as a word document). Please click on the "read more" link to see the entire essay.

Essay:

Literature: A Healing Tool

For years, doctors assured me I would grow out of the pain disorder I have struggled with my entire life. This disorder, Chronic Migraine Syndrome, encompasses a wide range of migraine experiences, but, for me, it means I have a headache or migraine all of the time. Last year, I realized that the doctors had stopped assuring me that I would outgrow my pain. I did not know how to react to the possibility of lifelong pain, so I realized I needed a way to more fully process my emotions about my chronic pain condition. Many others face a similar problem. While the type and severity of pain varies, around 100 million Americans suffer from chronic pain, more than the amount of people who have diabetes, heart disease, strokes, and cancer combined  (“AAPM”). After conducting research, managing a chronic pain blog, reading pain narratives, and writing to reflect on my own experiences, I have developed a fuller understanding of the ways in which writing and reading literature can help chronic pain patients learn from and cope with the physical and emotional pain that chronic pain conditions often entail.

Professional Poster Project

Dear Blog Readers,

I have finished the digital poster of information about my project. I made it to use in an academic poster fair accompanied by my oral explanation, so sometimes there are just bullet points. However, if you are interested--this poster will still give you an idea of how my project progressed this semester.

Here is the link to this poster:
https://www.slideshare.net/secret/q5683ucmo5D3tG

Thank you.

Updates

Dear Blog Readers,

Hello. I have added a couple of new resources, including a medication reminder tool (listed under the "Interactive Tools" category on the resources page) and a link to a discussion about dealing with sleep that is affected by chronic pain (listed under the "Miscellaneous" category on the resource page). I am hoping to find more resources on the second topic in the future.