Last night as I was falling to sleep, I decided to listen to Jon Kabat-Zinn’s Mindfulness Meditation for Pain Relief. I’ve listened to this audio book many times over the past few years, and I will admit that the first few times, I was quite dumbfounded with many of the concepts that I heard being discussed (primarily, the one about turning towards and embracing the pain, instead of hoping that it goes away). I continued to listen, however, and eventually reached the point where I figured that I’d give it a try, partly because it was right around this time when–years into living with rheumatoid arthritis–I started to realize that the pain just wasn’t going to go away.
Only recently have I realized just how far I’ve come, in this regard. A couple of weeks ago, I asked the following on my Facebook page:
Does anyone else feel a certain sense of “comfort” from the chronic pain? I mean, it hurts and all (no doubt), but as long as I feel the pain, it’s a reminder that I’m in my own body…and as long as I’m in my own body, it’s a reminder that I know exactly what to do, which ultimately leads me to the awareness that I’ll be okay (no matter how much it hurts).
On the day that I wrote these words, I had woken up with a stronger-than-usual morning flare, and what surprised me that most was what I wasn’t thinking. I was not feeling angry or sad, disappointed or frustrated. I wasn’t even wishing that I had woken up without this flare…I was just accepting my situation exactly as it was, and I was okay. Not only was I okay, but I was actually feeling a slight sense of comfort, as I realized that everything I was experiencing–including the intense pain–was normal.
As I sat there that morning, reading the responses that started coming in to the question that I posted (a majority of which said that they understood what I was trying to say, and often experience similar feelings/thoughts themselves), I went on to ask my sister (who has been one of the primary sources of support during my journey with RA, and who is also an experienced psychologist) if this new relationship that I’ve established with my pain and disability was a healthy one. After all, declarations of hate and anger towards pain and disability are so common, are such the societal norm, that it’s sometimes hard to imagine that one’s relationship with the pain and disability can instead be based upon the complete opposite of hate and anger: love and happiness.
Ultimately, I’m not sure if what I now feel is actually love and happiness for the pain and disability themselves, or is love and happiness for the life that I have…but since the pain and disability are such integral parts of my life, I don’t think it’s really necessary to make such a distinction.
I love my life, pain and disability included.
Any shreds of doubt that I may have previously associated with this statement have completely disappeared. This is my new mindset moving forward, and I feel like I’m on top of the world. The hope that I feel doesn’t deny my pain and disability; instead, it embraces them fully.
As I was listening to the audio book last night, I was struck by what the author said, a few minutes into the introduction. He said that if you were able to do one of the exercises that he had just walked readers through, then “you are already well on the way of developing a new and potentially healing relationship with your pain, and even more importantly, with your own mind and body.”
He could not have been more right.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
I look forward to writing more about the following books in upcoming blog posts! What RA/chronic pain/health and diet related books are you reading right now?
A Resilient Life: Learning to thrive, not just survive, with rheumatoid arthritis
Kat Elton, OTR
Too often, people faced with a disease such as rheumatoid arthritis hear words like, “disabling,” “progressive,” or “tragic.” “Tragic” may be what people are saying but the real tragedy is that these often repeated words do nothing but harm to those who hear them. They completely ignore a very real truth: physical issues can absolutely lead to positive transformation, action, challenge, inner strength, deep courage, and compassion. This unique book is written by someone who knows her subject well. Kat Elton, an occupational therapist and woman who’s had rheumatoid arthritis since age two, knows that people with RA don’t need false hope or to be told what to do. What they do need is to be led toward believing in themselves and improving their reality no matter what it is. Part practical guide, part workbook, part memoir, this book demonstrates that although there is no magic bullet or cure for rheumatoid arthritis, there is a way to live well with this disease.
More Info: http://www.amazon.com/Resilient-Life-Learning-rheumatoid-arthritis/dp/0615289231
Seamus Mullen’s Hero Food: How Cooking with Delicious Things Can Make Us Feel Better
Mullen was diagnosed with rheumatoid arthritis five years ago, and in that time, he has discovered how incorporating 18 key ingredients into his cooking improved his quality of life. In Hero Food, he shows how to make these key ingredients, or “hero foods,” your cooking friends; they can be added to many dishes to enhance health and flavor. Hero Food is divided into four sections, each devoted to a season. Each season is introduced with a richly imaged “movie,” providing the context of Seamus’s life and the source of many of the imaginative and beautiful recipes contained in each seasonal section. Seamus’s “heroes” are real food, elemental things like good meat, good birds, eggs, greens, grains, and berries. He cares about how his vegetables are grown, how his fruit is treated, and about the freshness and sustainability of the fish he uses. His hope is that you will eventually forget about why these recipes are good for you, and that you’ll make them just because they taste good.
More Info: http://www.amazon.com/Seamus-Mullens-Hero-Food-Delicious/dp/1449407587
Our Hands Can! A Show Us Your Hands! Photo Book Project
Show Us Your Hands!
The Our Hands Can! photo book contains the inspiring photographs and moving stories of dozens of people of all ages from around the world who live with different types of inflammatory arthritis. All funds raised from the sale of these books go to Show Us Your Hands!, an international awareness movement which serves to unite and inspire the inflammatory arthritis community.
More Info: http://www.blurb.com/bookstore/detail/3205952
Listening to Pain: Finding Words, Compassion, and Relief
Here’s a pain medication you can’t get at the pharmacy. Biro, an M.D. with a Ph.D. in literature from Oxford, asserts that language itself can alleviate pain—particularly its daunting power to isolate and silence. Illness and especially pain give rise to a wall that separates a person from the world, because pain literally leaves us speechless, Biro finds. What sufferers must do, he asserts, is find the words and images to describe what nobody else feels in exactly the same way. We need to think like Joyce and Tolstoy, Biro declares, and search for metaphors that are universal. His thoughtful, lyrical challenge is, in essence, a study guide to some of the last century’s most powerful writers, their metaphors of pain and suffering parsed and pondered. Biro even turns to evocative artist Frida Kahlo to illustrate the look of pain (portraying herself as a wounded deer, for example). And here’s why we should pay attention to Biro’s difficult, complicated lesson: as long as the conversation lasts, we are not alone.
More Info: http://www.amazon.com/Listening-Pain-Finding-Compassion-Relief/dp/0393340252
Enemy Within: A memoir of strength, determination & acceptance
“I’ve thought a lot about my first IV infusion; about the isolation of disease and the loneliness of the moment when the sickly green curtain is pulled across and you’re shut out from the rest of the world. It’s a moment of no control; when there’s not much choice anymore, just a road map of what you have to do and a landscape of obstacles to overcome.” (From Enemy Within) To the world around her, a young Karen Ager had an enviable life and future ahead – model looks, a killer body and an outgoing personality. But unknown to everyone, including Karen, she was carrying a crippling disease that would change the course of her life completely. Diagnosed with an aggressive form of joint-destroying rheumatoid arthritis (RA) at 17, Karen Ager was told she would spend her life on an invalid pension, unable to accomplish anything due to the constant pain she would suffer. Now 45 years old, Karen enjoys a full life. She married the man of her dreams, teaches grade school children full time, exercises and advocates tirelessly for the millions who suffer from rheumatoid arthritis. In the new book, Enemy Within, Australian Karen Ager shares her inspirational journey of personal suffering at the hands of fate, refusal to accept defeat and the discovery of a hidden gift that gave her a new purpose.
More Info: http://www.amazon.com/Enemy-Within-strength-determination-acceptance/dp/1741108500
Keeping A Secret: A Story About Juvenile Rheumatoid Arthritis
Why can’t Jennifer play soccer or jump rope? Any child with a chronic disease will relate to this young girl coming to terms with her diagnosis and treatment of juvenile rheumatoid arthritis, and the manner in which she shares this news with her friends. “Learning to cope with the pain of arthritis. This problem affects over 43 million Americans of all ages. Children with arthritis face more issues than just dealing with their pain. In Keeping a Secret, Elizabeth Murphy-Melas helps children understand their symptoms and cope with the consequences of juvenile rheumatoid arthritis (JRA). This is a thoughtful and engaging story of one girl’s journey from diagnosis to treatment to the recognition of the importance of supportive family and friends. Ms. Murphy-Melas has given a gift to children and their families living every day with JRA.” (Helene Belisle, Executive Director, Arthritis National Research Foundation)
More Info: http://www.amazon.com/Keeping-Secret-Juvenile-Rheumatoid-Arthritis/dp/0929173341
Pain: The Science of Suffering
Pain is one of medicine’s greatest mysteries. When farmer John Mitson caught his hand in a baler, he cut off his trapped hand and carried it to a neighbor. “Sheer survival and logic” was how he described it. “And strangely, I didn’t feel any pain.” How can this be? We’re taught that pain is a warning message to be heeded at all costs, yet it can switch off in the most agonizing circumstances or switch on for no apparent reason. Many scientists, philosophers, and laypeople imagine pain to operate like a rigid, simple signaling system, as if a particular injury generates a fixed amount of pain that simply gets transmitted to the brain; yet this mechanistic model is woefully lacking in the face of the surprising facts about what people and animals do and experience when their bodies are damaged. Patrick Wall looks at these questions and sets his scientific account in a broad context, interweaving it with a wealth of fascinating and sometimes disturbing historical detail, such as famous characters who derived pleasure from pain, the unexpected reactions of injured people, the role of endorphins, and the power of placebo. He covers cures of pain, ranging from drugs and surgery, through relaxation techniques and exercise, to acupuncture, electrical nerve stimulation, and herbalism. Pain involves our state of mind, our social mores and beliefs, and our personal experiences and expectations. Stepping beyond the famous neurologic gate-control theory for which he is known, Wall shows that pain is a matter of behavior and its manifestation differs among individuals, situations, and cultures. “The way we deal with pain is an expression of individuality.”
More Info: http://www.amazon.com/Pain-Science-Suffering-Maps-Mind/dp/0231120079
Disclaimer: Review copy. I received one or more of the products or services mentioned above for free. I only recommend products or services that I personally use, and believe will be beneficial for readers of this blog.
The old days of medical paternalism are gone. Today we have shared decision-making, in which doctors describe treatment options and patients choose the one they prefer.
It sounds simple, but it’s not. I learned this when I had to decide whether to have a feeding tube during cancer treatment. Doctors explained the tube’s benefits and risks, then left it to me to decide. I said no. I had my reasons — I didn’t want a foreign object in my body or an overnight stay in the hospital. I wanted to prove that I was tough enough to get through treatment without extra help.
But this was a bad decision. As time passed, I became too weak to continue daily radiation sessions. People kept trying to get me to change my mind, and finally a nurse succeeded. Consenting to the tube was the right thing to do, but it took a lot of persuasion for me to accept that.
Argument is a legitimate part of shared decision-making, but not everyone understands this. Some clinicians think that respect for autonomy means they should never disagree with a patient. Some think that it would be cruel to question what a seriously ill person says she wants. Some don’t want to devote time to the hard conversations that produce good decisions.
Patients avoid arguments, too. Many are too intimidated to take issue with anything a doctor says. But doctors aren’t always right, and patients who are afraid to argue can pay the price. A friend had his cancer properly diagnosed only after he challenged his doctors’ opinions about what was wrong.
In everyday life, arguments with family and friends help us think through the consequences of our choices and sometimes change our minds. Patients and doctors should do the same for one another.
St. Louis, Aug. 21, 2012
The writer is a professor of law and medical humanities at Washington University and the editor of “Malignant: Medical Ethicists Confront Cancer.”
Earlier today, as I dropped my sister off at her office so that I could use her car to run some final errands before I return home to South America this coming weekend, I couldn’t help from being momentarily transported back to my last visit here to Columbia, Missouri, which took place a few years ago, back before I had even started writing this blog. And as I drove around, noting that temperatures today would reach the low 100’s as opposed to the low 20’s last time I was here, I couldn’t help from thinking about how my life is such a polar opposite–in so many good ways–from what it used to be.
During my previous visit, I had already been living with rheumatoid arthritis for many years, and while I considered myself to be “experienced” with the challenges that I had to face, I started to realize that my coping skills were not keeping up with the progression of my disease. When it came to my physical life, I had a hard time walking; when it came to my emotional life, I seemed to have no problems sprinting–faster than I could ever imagine–down a very precarious slope into a deep and dark depression. Feelings of the “end of life as I once knew it,” which sprouted immediately after receiving my diagnosis of rheumatoid arthritis years before, grew to the point where I actually started to think that they best way out was, indeed, to end my life.
Needless to say, once I reached this point, I was frightened beyond belief. (Luckily, I was also frightened enough to ask for help.)
And earlier today, as I looked back at this period of time in my life, a time that was so marked with different emotions associated with thinking that my life was nearing some “end,” I couldn’t help but smile now that I am able to see that, in so many ways, it was only just the beginning…
The beginning of embracing and accepting my pain, and not wishing that it would just magically go away.
The beginning of sharing, with my head held up high, the challenges that I face on a continual basis, and no longer hanging my head in silent shame.
The beginning of re-defining what “success” means, and realizing that it has nothing to do with what others think, and has absolutely everything to do with what I think. (And loving the feelings of success that nowadays often accompany seemingly “simple” tasks such as getting out of bed, taking a bath, getting dressed, preparing a meal, etc.)
The beginning of transforming my physical limitations not into reasons why I should berate, criticize, and attack myself…but instead into lessons on how I can be more kind, gentle, and supportive of myself.
The beginning of finally understanding that asking for help makes me strong, and not weak.
The beginning of reminding myself, every time I started to get angry that someone else didn’t understand my disease, that my energy and thoughts were better spent on myself trying to learn something new about my life with chronic illness, something which would allow me to cope even better with the pain and disability.
The beginning of a new awareness that I can happier that I could have ever previously imagined, despite the fact that I have to deal with pain and disability, each and every second of the day…and the genuine hope that continues to carry me forward, which results from knowing that this happiness is more real than anything I’ve ever known before.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!