Mondays with Marlene

In my opinion....


Probably one of the worst things about chronic pain is feeling alone, imagining no one can possibly understand and trying to figure out how to lessen the pain or live with it....live being the operative word. Who can you really talk to besides your doctor? Who can really understand the mess this pain has made of your life? How about seeking out others like you who suffer from chronic pain? I don’t mean a stitch and bitch session; I mean exchange ideas, ask each other questions, give each other hope and know, finally, that you’re not alone.

A long time ago I had a “nervous breakdown”, a different kind of pain but pain never the less, and I’ve never felt so alone in my life. I felt ashamed that I hadn’t been strong enough to work through the stress and just carry on. Thank heavens I had a doctor who was not only compassionate, but smart enough to not just put me on “the pill” and tell me things would get better sooner or later. She sent me to the hospital as a day patient where I met many other people who were going through the same thing I was. I wasn’t alone after all and I also realized that I had absolutely nothing to be ashamed of. My job was to get well and not let the “stigma” of a nervous breakdown break me down.

Although my relationship with pain wasn’t a long one, I would bet the family farm that everyone suffering from chronic pain feels very alone and a little ashamed at not being able to handle it. I think the key to starting a new life is to gather all the information you can about your “problem” then act on it. Communicate, question, search and if, after all, you do have to live with pain for the rest of your life gather all the tools that you will help you, in the end, have a life. Sign up for group discussions, family sessions and know that you are not alone and have nothing to be ashamed of. Live.

We made the papers!

12 Mar 2009Calgary HeraldCHRIS SIMNETT ALBERTA HEALTH SERVICES
Penning the Pain Diaries
Deborah Nicholson has published five mystery novels and has three more manuscripts in various stages of the publishing process.
Courtesy, Alberta Health Services

Author Deborah Nicholson, left, is a transcriptionist at the Calgary Health Region’s Chronic Pain Centre. She is with co-worker Dr. Chris Spanswick.
The author of the Kate Carpenter mystery series, which is published by Severn House in England, found the transition from novelist to playwright anything but painful; despite the fact the subject of the play is pain.
The Pain Diaries is the story of Isabelle, a 30something woman who is dealing with chronic pain. It is anticipated to premiere in Calgary in the spring of 2009.
The play is the brainchild of Nicholson, who works as a transcriptionist at the Calgary Health Region’s Chronic Pain Centre.
She came up with the idea after participating in a number of focus group sessions with patients during the accreditation process for the centre about two years ago.
As a transcriptionist, Nicholson gets the cold, hard facts of a patient’s story and spends her days typing them out. She says many of the stories, told like country-and-western songs where the person’s truck broke down, their spouse left, the dog was run over and the house burned down. She had little understanding of these patient’s catastrophic lives and thought they just didn’t know how to deal with things very well.”
But when Nicholson met some patients, their stories — heard face-to-face — made a dramatic impact on the novelist.
“I’ve learned two things while writing this play,” says Nicholson. “I’ve learned reality just is. Your reality for you is as real, as painful and as serious as my reality is to me. Even if your reality is you’re a triple amputee from the Iran war with damaged lungs from the chemicals they were using and my reality is I’ve just had a wart burned off my foot. You’d think those aren’t comparable but in your reality that is the worst that can happen to you and in my reality that is the worst that can happen to me.
“Along with learning what is real to a person comes not being judgmental about them,” she says. “You can’t call them whiners because they’re not whiners. To them, it’s the worst that can happen to them.”
One story in particular hit Nicholson hard. A woman in her mid-30s came to the centre after years of dealing with crippling chronic pain. She thought the centre was her Mecca — the place where she would be cured and all her problems would be taken care of.
The patient met with Dr. Chris Spanswick, Medical Leader of the Regional Pain Program and Pain Physician at the Chronic Pain Centre, for a three-hour assessment.
“One of the things that is always made very clear to the patients is their pain won’t be eradicated, but it may be able to be reduced by about 30 per cent and then they will be shown ways to manage their pain and get their lives back,” says Nicholson. “This woman said she walked in and was expecting this miracle and all she heard was they couldn’t cure her pain. She went home that night and it was the deepest, darkest pit-of-the-soul moment and she seriously thought about killing herself.
“She fell on the floor in the kitchen crying and trying to figure out how she could end it all. She said she woke up the next morning and she remembered the second part of Dr. Spanswick’s sentence ‘we can help you get your life back.’ It was the first time she had any real hope in her entire pain journey.”
Nicholson’s eyes well up as she tells the story.
“Imagine if you couldn’t be intimate with your spouse or play with your kids; you couldn’t pick them up or go out and kick a soccer ball,” says Nicholson. “You have to sit and watch your life pass by.”
In the play, Isabelle is that person. Her pain keeps her confined in a room where she can only look out of a window to glimpse life going on outside.
It’s a powerful image that got into Nicholson’s head and wouldn’t go away. Normally, she would try and find a way to turn the story into a novel, but this one screamed out for the stage.
“It popped into my head,” says Nicholson of Issy’s story. “I did the focus groups and the story that woman told and a few others never left my mind for months.
“One day I was sitting at my desk typing and I had this vision of that woman having this crisis, going home and thinking how she was going to kill herself — searching in drawers for knives and things like that — and then falling on the floor crying because she couldn’t find anything to end it with. Then the house goes black and the show goes into intermission.
“In my mind that’s how I saw it and I knew it had to be a play, it couldn’t be anything else because it was so visual.”
Nicholson, who worked as house manager for Theatre Calgary before joining the health region, says her initial goal in writing the play was to reach out to chronic pain sufferers and let them know there is hope to get their lives back.
“The other purpose is for people like me to learn what I’ve learned; to learn the whole judgment and reality lesson,” she says.
“It’s not just about pain. It’s been a huge epiphany in my life about people and their opinions. If my friend thinks her high school experience was horrible, it was. I can’t argue with her. That is her reality. That has been huge in my life. It’s totally changed my perception and understanding of people.”
Spanswick is enthusiastically behind the project.
He and other staff at the Chronic Pain Centre have been reading the play as it’s written, giving Nicholson feedback to make the work as accurate and powerful as possible.
“I think this is quite an important thing,” he says. “I see the opportunity of this play to not only raise the profile of pain but also to legitimize it to some people. This has a huge potential to educate people.
“What I like about it is it’s innovative; nobody has ever thought about doing it this way. It’s a way of getting across information and understanding in a non-threatening way and a way I think is more likely to stick.”
Nicholson’s script is as funny as it is serious. She’s out to entertain, not preach. She is hoping to hold a gala opening for the play in the spring and run it for at least a week in a prominent Calgary theatre. There is already interest to stage the play in Edmonton and in Australia, where her books are very popular.

I'm hoping this link will take you there.

Welcome to our new Master of Ceremonies

Welcome to Marlene Robertson, our new Master of Ceremonies around here. She has graciously volunteered to keep this blog running regularly, to free me up to write the play, edit the play, fundraise for the play and eventually stage the play. So you can now watch for regular updates - two to three times a week.

We appreciate all your comments, so please keep them coming.

Here's Marlene's first message.

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“You’re such a pain in the neck; Harry is a total pain in the butt.” How many times have we all made these statements and probably many more variations? These are relatively painless pains, and quickly pass. Nothing life-threatening here. But what happens when the pain doesn’t go away? What happens when we live with pain every day, sometimes for weeks, months or years? What happens if the pain never goes away? Well I suspect some of the people we have called a pain in the neck or a pain in the butt live with pain every single day of their lives, but we can’t conceive of that so we think they should just get on with life or suck it up or just grit their teeth and quit complaining. Ah, if only it was that easy. Wouldn’t life be grand?

I’m Deborah’s mom, Marlene, and I'm going to take over as "blog master" here, as the Pain Diaries becomes a reality. Over the years I’ve had some pain: a broken wrist, surgery, root canal and many years of migraine headaches, but until I was in a very bad car accident, I truly had no idea what pain was all about. Lots of bumps and bruises and stitches and six broken vertebra in my neck and back. Paralyzing, numbing, never-ending scary pain. But I am among the blessed because almost eight months after the accident, all six vertebrae have now healed, the pain is pretty much gone and my neck is slowly starting to work again.


What would I have done if I had to live with that pain every day for the rest of my life? Could I have sucked it up, got on with my life or grit my teeth? I don’t know and thank God and my Angels I don’t have to find out, but it made me understand that pain can be overwhelming and can literally cripple you. No more skiing, long walks on a perfect summer evening, or taking your kids camping. No more driving the car, making love with a man you adore, a man who has stuck with you through thick and through thin, a man who is suffering as well. Life will never be the same, and as I was so fond of saying throughout my recovery, “I just want my life back.” I have so very much to be thankful for and never again will I judge anyone who is in pain. Never.

Dr. John Clark is not only a member of our Advisory Panel, he is medical director for the Calgary Health Region Chronic Pain Centre, and an international expert on chronic pain. He was kind enough to take some time out of his busy schedule to give us a "web interview". Hope you find it as interesting as I did.


You started out as an anesthetist. Can you tell us what led you into the field of pain medicine from there?

Exposed as a resident in anesthesiology to chronic pain, had previously worked as family doctor and it was what was available as a job when I wanted to return to Halifax.

How has the practice of treating pain changed from when you first started out to the present day?

Originally very focused on physician only care, no resources available to provide care, pain was just ignored. This is still an issue to some degree but it is now recognised that working as a team with a person with chronic pain and their family is a much better way to help - interdisiplinary teams.
Resources and wait-times are still a major issue.

Can you define chronic pain, for anyone who might not really understand the term?

Any pain that lasts longer than it should based on why pain initially occurred

What frustrates you most about the field of pain medicine or treating pain?

The lack of education provided to all health care professional about pain during their eduaction. Less than 1% of education is directed to pain management but pain is the most common reason we see a physician!

Do you have any words of advice for people out there who are suffering chronic pain?

Become advocates, join consumer groups like the Chronic Pain Association of Canada to advocate for more resources and better care and better education

How did you get involved in the Pain Diaries Advisory Committee?

This is a unique way to bring the issue of pain and how to help those with pain to a much broader audience, to raise awareness and to advocate for better care and more timely access to care. Empowerment.

What sort of impact do you feel a play like this could have? Can art and science help each other out, or will they always just be opposite sides of the brain?

We need innovative ways to highlight and focus on pain as a disease - this is one way

What do you hope that people involved with and/or viewing this play and documentary will get from the experience?

Better understanding about what those with pain and their families go through and the impact it has on so many peoples lives.

A desire to donate to the Calgary Health Trust to further research into how best to treat pain and set up a Trust to establish a Research Chair in Chronic Pain at the University of Calgary. The Calgary Health Region's clinical program is a world leader in the management of chronic pain, lets make Calgary a world leader in research in this area as well!



Thank you.

Long Time No See

So, there is something I've figured out as I've been working really hard to lose weight. Life keeps getting in the way. You can use it as an excuse and never accomplish your goals, or you can plow through the hard times and come out the other end. I'm trying really hard to plow through. Really. And I feel sort of successful, after all, I have almost three quarters of the play finished. And that is GREAT! And I'm really happy with the content overall, though it will require rigorous editing - but then what writing project doesn't!

And do you know what else I've discovered? You can't do it all alone!

So here's what happened since last we've talked - I've got two books out at two different publishers and am getting positive feedback, but still waiting for that magic word "contract" and have been doing some editing on those.

I've had a great opportunity arise to work on a children's story that is probably going to turn into a young people's symphony concert.

I've written three quarters of the Pain Diaries.

I've been overcome by another great idea that came to me as I drove the coast of Oregon two summers ago.

Plus I've worked a full time job and managed full time family issues.

Did you hear the one about my mother who was trying to move back to Canada from Mexico with her husband? They got stopped for about two months in California with some heart problems. Then, they got medical clearance to travel and three hours on the road they had a blow out which led to a devastating car accident. They had to be cut out of their car, mom was unconscious and it turns out she has about six fractures in her neck and is now trussed up for the next three months or so. I have to say, stuff like this really distracts me from writing - with the emotional toll it takes.

On top of that, I try really hard to maintain some balance and have a bit of a life. I'm still hoping to find lots of travel and friends and fun before I go, and maybe even love...

So I can't do it alone. I can't write a play, manage the project, raise the funds, run the workshops and man the blog. So I'm asking for help.

I'd like to find someone (or many someones) to help with the blog. We really want this to become in interactive forum for pain patients and caregivers, but we need a blog-master/mistress. I can't run this and maintain everything else...as I've already proven.

I would love to put together a fund-raising committee. We need to raise about $20,000 to run a successful workshop performance to polish the play. We probably need another $100,000 after that to stage a big opening gala and week or so run of the show. The great thing is that this would potentially raise about $200,000 in donations, which would go into pain programs/research. And the Calgary Health Trust will write tax deductible receipts for us for the project.

And if I can't get a team, then I'll still get it done, but a little slower and one task at a time.

So if you're out there and you think this is something you could help with, send a comment, which will magically arrive in me email box and let me know.

Otherwise, thank you all for being patient and don't give up - I haven't!

Deb

Happy New Year!

Wow, can you believe it's 2008? Wasn't it just 2000 and we were worried about world-wide computer failures? Or maybe it was 1986 and I was shopping for a bow for my hair like Fergie wore? Or maybe it was 1976 and I was planning for my first trip to Europe? Yes time flies.

So to celebrate the passage of time as we tick towards the work=shopping of our play - lets start with some mini-interviews of some people very involved in chronic pain.

First, let's start with Dr. Chris Spanswick. Dr. Spanswick is with the Calgary Health Region and practices as a pain physician at the Chronic Pain Centre. He is also the Medical Lead for the Regional Pain Program. Dr. Spanswick, and his associated Dr. Chris Main, actually wrote the text book "Pain". You can see Dr. Spanswick's picture on the right hand column, as he is on our advisory committee. Here is what he has to say.

Dr. Chris Spanswick

Q: You started out as an anesthetist. Can you tell us what led you into the field of pain medicine from there?

Chris Spanswick: Having a boss who was a pain in the but, I was looking for a cure! My first boss in anaesthesia was interested in chronic pain. It was down hill from then on.

Q: How has the practice of treating pain changed from when you first started out to the present day?

CS: People get better! Doctors don't carry the burden on their own anymore. Slowly people actually believe chronic pain exists! Needles are used more judiciously.


Q: Can you define chronic pain, for anyone who might not really understand the term?

CS: Living with a fire alarm going off all the time.

Q: What frustrates you most about the field of pain medicine or treating pain?

CS: Lack of appreciation by non-pain colleagues. Unrealistic expectations given to patients by others. The promise of cures by those who are only good at wallet-ectomies. More money...................for research and treatment resources. Having said that we have more than anyone else I know.

Q: Do you have any words of advice for people out there who are suffering chronic pain?

CS: Trust me I'm a doctor! Take each day as it comes. Keep active if not physically (and that's important) keep active mentally and socially. You are what you do. So make sure you don't do nothing but you do something.

Don't trust people who say they can cure you especially if they make a lot of money from you!

Q: How did you get involved in the Pain Diaries Advisory Committee?

CS: I was told to and I always do as I am told! Nobody argues with Deb (and lives!)

Q: Okay, so when I get an idea I must admit that I'm like a dog with a bone and I won't let go! What sort of impact do you feel a play like this could have? Can art and science help each other out, or will they always just be opposite sides of the brain?

CS: It will get pain talked about. It's real and wrecks people lives. They don't imagine this stuff. Perhaps then politicians will listen and take it seriously too. Nobody does until it either happens to them or someone they love.

Q: What do you hope that people involved with and/or viewing this play and documentary will get from the experience?

CS: I hope they laugh and remember the next time they meet someone who has chronic pain. I hope they bug their MLA.

Q: Thank you. Tune in weekly for more interviews. If you have questions or comments, please send them in. We do not guarantee to answer them all on line but will read your correspondence. Please remember that you should get all your medical advice from a trusted primary care physician and NOT the Internet!

Raindrops on Roses and Timelines for Plays...

Yes, the holiday season is upon us. Where has the year gone?

Well, for me, here's where it's gone. I work a full time job and write at night and on weekends. I squeeze in visits with friends and family. This year also included two moves (am I crazy or what) but now I have landed permanently - barring flood. And I shouldn't joke about floods, because the year also included finding our offices at the Chronic Pain Centre under about 3 inches of water. And can you believe it - here it is December and the flood was June 20 - and we are still undergoing some renovations from that event. We've had some turnover at the Centre, so I've been working alone for a good part of the year, and getting very far behind, hence my absence from this site. But now we're put back together, I have a co-worker again and we're caught up, I'm almost finished the interview process, I've written another book and I'm working on finishing the play. Now I see where the time went.

But this year will forever be etched in my memory. It is the year I met some incredible people and learned so much about pain. To hear someone tell me how they wouldn't change their pain experience because they came out the other end understanding what was more important in life than they did before - how can that not affect you. Or even to hear someone still struggling with the journey, still trying to find some meaning and purpose in their lives. I have had sleepless nights, I have cried when listening to interviews, and I have written some scenes which I think have captured a bit of this journey.

I have also learned a lot about grant proposals and fundraising (our goal is $100,000 to $150,000 thousand - so if you know anyone with lots of money to give....)

But for now, I want to wish you all a wonderful and happy holiday season and let you know what our new timeline is for the next year, so you can keep track of our progress.

And don't forget - if you have anything to say - you can leave your comments here!

TIMELINE

Blog:

January, February and March - interviews with the advisory committee and pain experts from around the world.

April - Summer - notes on workshops, auditions, fundraising and everything else involved in mounting a production!


The Play

January - June: complete interviews and writing the play. Work with Advisory committee on draft of play. Re-write and re-write and re-write some more!

July/August: Workshop the play. Details to be announced.

Fall 2008: The opening of The Pain Diaries - Details to be announced.


The Documentary

Filming will take place at various events throughout the year. Again, if you have any comments or ideas, please post them here and we will be in touch.


Thanks to you all for your support!