Heal/Tell Patti

March 22nd, 2013 by Kris

Patti lives with chronic pain in South Portland, Maine.

Be sure to see selections from our Portraits of Pain series “Heal/Tell” at the Biddeford arts organization Engine, at 265 Main Street in downtown Biddeford. The Heal/Tell portion of the exhibit will run through April 2nd.


My story is multiple folds. The most recent chapter is about intestinal discomfort. It’s a very odd intestine, with a real big kink—it’s always partially obstructed. I had several intestinal obstructions over the past few years—a mishap after a laparoscopic surgery 11 years ago, which left me fighting for my life. My intestine surgery was one event, and a lot of things went bad. My gut is adhered down by scar tissue. Matted down. I’ve traveled through a maze of medicine.

Had they put one suture in the opening I don’t think I would have had intestines herniate up and go gangrenous. According to standards of practice this was acceptable in the way they close the surgery opening and my doctor not ever seen this complication. I asked her to go back to her team and present my case and ask that they think about how one suture could’ve changed my life. But I’m not sure it has changed their standards. She doesn’t know to the degree my life has been impacted. One suture could’ve changed the outcome and I could not be miserable after I eat.

The system can support us by doing really good communication between providers. The IV pharmacy has been integral in my ability to stay out of the hospital with home infusions to maintain my hydration. It means I am more in the driver’s seat. Illness manages chunks of my life but I’m still managing the rest, I’m not depressed, I’m not withdrawn, I’m engaged in my life and stay active. Last night I went to friends for dinner, and knew I needed to be home within two hours since my pain
usually starts then, I don’t ever forget that.

By getting a multi-disciplinary team who wants to support me, I have a job and I’m at home. I still get hunger, but I can’t think and feel bad at the same time so I don’t eat when I work. I might bring a popsicle to work—it’s a little bit of fluid and some sugar, which helps—it’s a way to stay focused. I work in a health care system and they understand. I still think I do a good job.

One of these days I’ll have an obstruction again, and I’ll have surgery. It’s a complicated surgery, and it could kill me—no one wants to touch it unless they have to.

I want to be engaged and I can’t be if I’m in pain. I try and use lots of methods to keep my pain in check. I have my dog and my heating pad, and I’m very good at distraction so I can deal with it most of the time.

Out of struggle you can have a positive effort. It’s a great to channel energy when I’m not feeling good into something creative and have something beautiful at the end of the pain.

Heal/Tell is a series of narrative and portraits by Cathy Plourde, Director of Add Verb Productions and Holly Haywood of the University of New England.

Please leave a comment – do you live with chronic pain?  What helps you?

Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.

Opening at Engine

March 10th, 2013 by Kris

On Friday, March 8th, Your Brain on Art, An exhibition to promote brain awareness, brain safety and pain advocacy, opened at Engine, in Biddeford, Maine.

The works of more than 10 artists were on display, including prints (see right) from the Heal/Tell series by Cathy Plourde of Add Verb Productions and Holly Haywood, of UNE. See individual portraits from this series in earlier blog posts featuring the narratives of Kate, and Sue.
UNE Professor of Art Sarah Gorham’s work (background, below) is an interpretation of her father’s brain cancer.  Hear her talk about it in this brief interview Neuroscience meets art in Biddeford exhibit.


In the image to the right, in the foreground, The Memory Neuron, is the brainchild of Tammy Ackerman of Engine, and UNE Senior Neuroscience major Lindsay St Louis. Shannon O’Connor and Kyle DiMare, students at the Maine College of Art were commissioned to create the sculpture – envisioned as a way to “engage the community through artistic expressions and create awareness to the many people who have been impacted by brain injury or illness.”*  The public are invited to leave messages on the neuron to/for those who have been affected by brain injury or chronic pain.

In the background, paintings by Karen Musick, a self taught artist from Kerrville, Texas whose Musickscapes map the “landscape of her mind”* as a way to deal with issues involving medical negligence and chronic pain.  Musick will be visiting UNE for the 11th Annual Interprofessional Spring Symposium on April 4th, and will participate in an artist’s panel (PAINting: artistic insights into the lives of chronic pain patients, 1:15 p.m. Harold Alfond Forum 231) to talk about her work and its relationship to pain.

As seen below, other artists include Jon Sarkin, a prolific artist whose artistic journey changed profoundly after a medical procedure that left him deaf in one ear, with splintered vision and difficulty balancing.  Unable to see the world as a whole, and unable to ignore its infinite detail, his brain tries to make sense of what it perceives, and through his art, he tries to make sense of  the faulty information he receives.

Jenn Shifflett lives and works in California, her painting Fire (seen below), has been the cornerstone image for the upcoming Symposium. She lives with Neurofibromatosis type 2, and a select few pieces from her large body of works are based on MRI films which were made during efforts to locate and treat her pain. When created, her “internal landscape” paintings, became a “means…to transform and find meaning in what cannot otherwise be healed through conventional medicine.”*

Nancy Andrews, whose work (seen below) combines storytelling, documentary, animation, puppetry, and research.  Some of her research is into her own experience following profound delirium as a patient in an ICU after extensive surgery.  She knows she got very good care during her hospitalization, but also knows that the aftereffects for her might have been avoided, and has made it her mission to “help patients, family members, and caregivers to identify post-ICU conditions and get help for these, when they occur.”*

Many thanks to Ed Bilsky, Tammy Ackerman and Lindsay St. Louis for all their work on this show – which will be open through the 6th of April.

See more pictures of opening night on Facebook

*All quotes from the Gallery program, and artist biographies.

Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.

“Your Brain on Art” exhibition focuses on raising awareness around brain safety, brain injury and recovery, and chronic pain

March 4th, 2013 by Kris

Our friends at the Biddeford arts organization Engine, in collaboration with the University of New England’s Center for Excellence in the Neurosciences, will host an opening reception for “Your Brain on Art” on Friday, March 8 from 5:00 p.m. to 8:00 p.m. at Engine’s gallery space at 265 Main Street in downtown Biddeford.

Artist Jon Sarkin

Artist Jon Sarkin

“Your Brain on Art” features award-winning artists who have been impacted by brain injury, trauma or chronic pain including Jon Sarkin, Nancy Andrews, Karen Musick, and Jenn Shifflett.

"Fire" Jenn Shifflet

"Fire" Jenn Shifflet

University of New England art professor Sarah Gorham will exhibit work portraying her and her father’s journey following his diagnosis of a malignant brain tumor and his ultimate passing because of the cancer. Add Verb Productions Director, Playwright Cathy Plourde, and UNE’s Holly Haywood will show large format photographs from their Heal/Tell series (which are also featured on this blog).

"Kate" by Holly Haywood

"Kate" by Holly Haywood

The exhibit will also include contributions from artists of all ages, including local school children and students from colleges and universities in the area. The Maine College of Art will exhibit the 10’ tall stainless steel “Memory Neuron” and local middle school students will display their interpretive drawings. Dr. Moses Chao, the former president of the Society for Neuroscience, will be an honored guest at the public opening. The exhibit coincides with the national Brain Awareness Week March 11-17 and will involve other activities and events including:

Wednesday, March 13, 6pm: “From the Studio to the Treatment Room” Licensed clinical social worker Dick Tryon and artist Nora Tryon, demonstrate their work in art therapy.

Saturday, March 23, 1-4pm: Helmet Giveaway and Interactive Art with the Michael T. Goulet Foundation

Friday, March 29, 5-8pm: Biddeford ArtWalk featuring the Memory Neuron community sculpture installation and Knit-a-Neuron

Sponsors of the exhibition include the University of New England’s Center for Excellence and Neuroscience Club, the Michael T. Goulet Traumatic Brain Injury and Epilepsy Foundation, Maine Medical Center Neuroscience Institute, P&C Insurance, Port Harbor Marine, Dennett Craig & Pate Inc., Stuart Financial, Dunston Dental, FHC Inc., Southern Maine Medical Center, Kenneally Dental, Run of the Mill, Southern Maine Marine, Saco Biddeford Savings, Saco Bay Tackle, The Cheese Iron, Dave and Melinda Anderson, Ed and Jill Bilsky, and the Coastal Healthy Communities Coalition.
“Your Brain on Art” will be on display at Engine’s gallery at 265 Main Street in Biddeford until April 6.

For more information, contact: Engine executive director Tammy Ackerman at either director@feedtheengine.org or 207-229-3560.

Heal/Tell Kate

March 4th, 2013 by Kris

Kate is a student at the University of New England, in Maine.  She had to give up ballet as a senior in high school because of her chronic pain.

Be sure to see selections from our Portraits of Pain series “Heal/Tell” at the Biddeford arts organization Engine, at 265 Main Street in downtown Biddeford.  The exhibit will open Friday, March 8 from 5:00 p.m. to 8:00 p.m. and will run through April 6.

After my AT and back injury, the hips were the next to go, and the most severe pain. My hips still hurt every single day, even when not dancing, from the constant rotation and overexertion. Ballet is not safe unless practiced correctly. Even walking from point A to point B hurts. I saw a discussion saying ballet dancer injuries are the most severe next to football. I’d love to see the research behind that.

Thera-bands are for tone and strength—these are my favorite.  I use them now for strengthening I didn’t get in PT.  The second a dancer enters a studio for the first time he or she should be presented with one of these and taught strengthening exercises.

These [new pointe shoes] are bright, shiny, innocent.  They have not seen the depth of the stage, the hours of rehearsal, and not seen the blood, sweat, or tears caused by intense training.  Of course, they have not seen disgustingly blistered and calloused feet.

If I had told my teachers I was injured they would see that as weakness. Pain and injuries changed my mindset.  If I could endure the pain of an injury and become okay in the end, I could handle anything life throws at me.

… when I told my parents I couldn’t dance anymore, my senior year of high school, they hugged me. It’s hard trying to get over everything that I have worked for my entire life being taken away–at 18– for something I didn’t want. I didn’t want med school; I only wanted a studio. That’s a midlife crisis before graduating high school.

Not until I came to UNE, did I realize there’s place for me.  I know the development and hardships of a dancer and I want to apply my experience as a dancer with medical training and injury prevention.

Heal/Tell is a series of narrative and portraits by Cathy Plourde, Director of Add Verb Productions and Holly Haywood of the University of New England.

Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.

Heal/Tell Sue: Part 1 of 3

February 20th, 2013 by Kris

Sue lives in Saco, Maine, with a diagnosis of Rheumatoid Arthritis. Realizing that she is not alone in her experience of chronic pain, she started the Chronic Pain Support Group of Southern Maine.

Be sure to see selections from our Portraits of Pain series “Heal/Tell” at the Biddeford arts organization Engine, at 265 Main Street in downtown Biddeford.  The exhibit will open Friday, March 8 from 5:00 p.m. to 8:00 p.m. and will run through April 6.

 

Before I had my shoulder replaced in 1994, I couldn’t sleep for more than two hours at a time without being wakened by the pain.  The pain doesn’t register with you after a while—it envelops you and becomes a part of your life. My RA doctor is absolutely fabulous.  He knew I had RA the minute I walked in.  What I like is that we’re equals in this.  He’s my partner, I’m his partner—together we cope. If he doesn’t know the answer he’ll research it for me.  I never feel he’s rushing me out the door.

 

Chronic pain is hard for people to understand, and that’s why I started the group.  I got permission to meet at a local church, and put out posters and PR notices. It surprised me there were so many people living with pain. Every story was different, but they all nodded their heads to show they understood what the speaker was going through. The group freed me to love my friends for what they were—they didn’t need to deal with the issues of my pain.

 

I’m lucky it’s not in my hands—my rheumatologist caught it before it got that bad.  I’m pretty much in remission. The pain I have now is from damage done before the RA was diagnosed, in my shoulders and knees.

 

The thing that really frustrated me at first was people telling me I should be taking bee sting therapy or wearing copper bracelets.  I have the disease; don’t you think I’ve done the research?  If there’s research that backs it, and it’s not too expensive or too invasive, I’ll try anything.  Different things have helped and some have not.

 

I just decided what was important.  Money is an important issue when you’re faced with joint replacements.  We did afford it.  It means not having a vacation, but some people just don’t have the money to do it.  A friend is waiting yet another year because she doesn’t have the money, meanwhile her knee is deteriorating and her health deteriorates because the pain keeps her from exercising.  I pay taxes, too.  I know the money has to come from somewhere.  I don’t know what the answer is, but I think health care should be something everyone has a right to have.

 

I should ride my exercise bike more, but I do walk three days a week with a friend of mine.  We walk about two miles. Exercise is really key in a lot of chronic pain problems.  You need to do what they tell you to do at PT—if they say do the exercise three times a day, do it three times a day because that’s what’s going to help.  A physical therapist suggested that I get tested for RA.  I thank him for that to this day.  I was surprised, looking back, that he recognized the symptoms for RA—my doctor did not.

 

Do your own research but don’t believe everything you read on the internet. You have to be a partner in this deal—some don’t want to put the work in or think they aren’t capable.  But you know your body better than anyone else.  The doctor knows what the tests are saying, but the doctor’s got to hear from you.

You can’t just say it hurts.

Heal/Tell is a series of narrative and portraits by Cathy Plourde, Director of Add Verb Productions and Holly Haywood of the University of New England.

Prose Portrait of Sue: Part 2 of 3
Video Portrait of Sue: Part 3 of 3

Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.