Heal / Tell Liam

April 3rd, 2013 by Kris

Liam, age 10, lives with Rheumatoid Arthritis.

I remember going to one doctor and they told me people don’t usually get it until they’re older. I got it in my knees first, now ankles, fingers, and I think I might have it in my back. When I wake up my knees and ankles hurt and my back really hurts.

MOM: He’s easy going, except in the morning. He’s a whole different kid in the morning because of the pain.

I go to lunch every Wednesday—it’s for different kids, 5th and 4th graders who have any disorders, and we talk about it. About half the kids have RA but we all have to go to the hospital a lot and we don’t like it.


They kept asking me if I did anything to break my leg and they kept asking. They asked a lot.

Mom: It was almost a month that he was in a cast, permanently damaging his knee. No one thought of it. “No, you must have broken your leg.”

When I got to the doctor for my Arthritis I don’t get how my arthritis is happening and I don’t know what happens to the joints. I didn’t get a lot of the words they told me—it gets complicated…

MOM: What’s the term you use for when you can’t move your hands?
LIAM: If my hands are in one position for a long time they get ‘frozen’.
MOM: He tends to say he’s fine when he’s not fine.
LIAM: When? (laughs)
MOM: He’s accustomed to being uncomfortable. But he’s patient with people.

Usually I can’t wait until it gets bad; my medicine takes a long time to work.

At nighttime I give them food and my sisters get the eggs.

I give the sheep hay. It’s hard—the hay is heavy. When we have lambs we have to split them up.

I want to work for the Animal Welfare Society and be a ski coach, which I can do when I’m 16.

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.

Heal/Tell Robert: Part 2 of 3

March 31st, 2013 by Kris

Meet Robert, former Navy SEAL living with chronic pain.

A year ago I had some really bad thoughts and the horse heard my voice, heard what I’m thinking. “This person’s broken. I’ll get close and let him know I feel what he’s feeling.

I tell my wife I’m leaving, I’ve got to see the horses. They so set me right. I’m clear the rest of the day until the night when inflammation starts to set in my joints.

The entire left half of my brain is completely covered in scar tissue. This horse can erase all that for a moment—everything—the pain, the thoughts in my head—my mind is completely free and clear.

Vets are crying quietly in a room, thinking they’re better off dead than alive, just taking up space with all the memories.

Chronic pain and PTSD are sister and brother, you won’t have one without the other. I know nothing will erase my mind from the horrors but I can forget about them for two minutes—magic I can’t get in a pill.

I have a first name. Use it. I’m a case number, but it’s got to be beyond that.

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?

Prose Portrait of Robert: Part 1 of 3
Video Portrait of Robert: 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.

Heal/Tell Dennis

March 29th, 2013 by Kris

I’m nothing but a number. There’s more than just the pain of the knee. It gets into your emotional problems of not being able to do anything. I want to exercise to get rid of my belly but I can’t. They’re telling you you’ve got to exercise, stretch. I do and the next two days I can’t do anything.

It’s always medicine. “You’ll hurt for a year, just take the pain medicine.” I don’t wish to take the pain medicine. I come from a family of alcoholics, and I’m always scared of being dependent on something. I found out early in life not to be dependent on anything.

I don’t understand how some people have their knees done and don’t have any pain. “Take this pill,” “Take this pill”—I’m taking 12 pills—I put ‘em in a bowl with some milk and blue berries. I tried to get them to put a grease fitting in my knee—it’s metal! They wouldn’t do it.


“Take another pill.” I’m not scared of dying. I’m tired of the pain.

I don’t want to get hooked and I’ve a lot of machinery down here you could lose your fingers on. I make teddybear rocking chairs—I build them nice and round so if they hit their head on it they won’t get hurt. I can do any kind of cabinet. But it’s hard to stand on my leg too long. It’s getting better over time. That’s what they tell me.

I’m always a happy person—I fool around and joke. I think that’s how I’m hiding my pain. I’m pretending I’m someone else.

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.

Heal/Tell Jane

March 28th, 2013 by Kris

Jane lives with chronic pain in Old Orchard Beach, Maine.

Whether you are an OT,  PT or some other healthcare provider, you need to be aware that pain is pain.  My pain is real, I don’t make it up. I want medical professionals to know about pain that involves the whole person—it’s not just how’s my belly feeling after surgery, especially when I have other circumstances causing different pain issues all at the same time.

I don’t look or act like I’m 77.  That’s my choice.  I don’t give in to the pain because my medical team supports me to have a positive quality of life. My frustration is often because I am not physically able to help with my grand daughter, Mariah.  Every year there are more things I can no longer do.

The time in the day I feel the most pain is when I go to bed at night.  There is often so much pain I can’t sleep.  I manage it by walking around every few hours.  During the day I manage the pain because I’m busy—not letting myself think about it.  Crocheting, reading, genealogy, games on the computer.  All of that helps me get by.  I want to be able to help people, but my body wants to be in bed.

The pain scale of 0 to 10 is often misleading.  Sometimes my pain level is much more than 10, because it is a combination of several unrelated causes of pain that I am experiencing all at the same time. My pain is very complex but it is very real and often difficult to explain.

 I make these prayer shawls for people in my church.  Sometimes people just need some comfort.  This is a way I can contribute and use my time to add comfort to someone else’s life.

I have a good relationship with my medical team. I did have one problem with a surgeon who was on call, and not part of my usual team. At one point in my treatment I heard him tell a nurse that he thought “I just liked the feel of pain meds and it was really all in my head”.  He is no longer a part of my team of professional care providers.

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.

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.