My Passion for Distraction

My Passion for Distraction

By Cynthia Toussaint

Cynthia Toussaint

Cynthia Toussaint

I’ve been using distraction as my #1 painkiller for 34 years without knowing it. Now that I’ve come to  understand the power of intuitive healing, I want to shout it to the world.

After getting CRPS from a ballet injury at age 21, I thought I had gangrene and my purple, burning leg would be amputated. Perhaps the biggest mystery back then was not my excruciating, undiagnosed pain, but the fact that when I got on stage in a Vegas illusion act complete with tigers and fire, I didn’t feel it. When I was in front of the audience, it was as though someone had flipped my pain switch off.

Problem was, when I wasn’t on stage I couldn’t walk let alone dance. When the pain spread and I had to quit the act, I listened to Prince – a LOT! His artistic genius gave me an adrenaline high. Don’t get me wrong, I still had pain. But listening to my all-time favorite artist at his peak often turned a level 9 or 10 down to something I could survive. At least temporarily.

Back in those days my mom was in tune with distraction therapy more than me. When she heard my moans and cries, she automatically started cooking. I was shocked one day when she confessed that my pain was always better when I was eating something tasty. How could that be?

Years later after the CRPS spread throughout my body and I was bedridden, my life became pretty damn small. But I still had normal desires – and my life partner John and I made love often. I was amazed that my tortured body could still feel pleasure. Those afternoon delights gave me ecstatic relief.

Founding and leading the nonprofit For Grace – where we empower women in pain – continues to be my healthiest, most meaningful distraction. Waking most mornings to projects stacked high, phone calls and emails to return, meetings to attend and interviews to give doesn’t allow me to focus completely on my pain. When I’m fully engaged in work, this healthy distraction sets up a barrier to the pain-is-me identity, a trap too easy to fall into.

Probably the longest, most focused and challenging project at work was writing with John our pain experience as a book. For nearly seven years, we huddled with co-writers, agents, lawyers, publishers and our editor. During this often grueling, yet liberating, process, I noticed a subtle improvement in my function and reduction in pain. I used my wheelchair less and began yearning to get into a swimming pool.

When I finally made the splash, it was like moving through medicine – but with no side effects, except for gaining a new community and a better shape. In fact after no aerobic exercise for 19 years, I was within weeks swimming a mile. In no time I recaptured other passions that CRPS had long before ripped out of my grasp. I was singing, traveling and playing the piano.

The doctors called my partial remission a miracle, inexplicable. However I knew it had come about as a result of my years of healthy distraction forged by narrative therapy. But how did it work – and why?

That’s what we’re going to learn at For Grace’s 9th annual Women In Pain conference on September 23rd in Los Angeles (a free, live webcast will be available at forgrace.org.) Speakers will unveil the research that explains how positive things that take us away – allowing us a mini-vacation if you will – also lowers our pain level.

We’ll discover many strategies and actions that can help us get away from our pain including good sleep, healthy sex, guilty TV pleasures and expressive arts. With our Hawaiian theme, including a hula dance troupe led by a woman in pain, we’ll be reminded that fun and play can still be a part of our lives.

I understand too well the suffering, fatigue and isolation that defines chronic pain. In fact, in many ways this has been the most painful year of my life.

But come September 23rd, I’m grabbing my passport, slathering on suntan lotion and going on vacation. I hope y’all will join me. Aloha!

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There are 15 comments for this article
  1. Donna Rubinetti at 2:56 pm

    I am constantly amazed at the resiliency of the human spirit when I read these posts. You all have great ideas and are so also empathetic. Finally I’ve found people that truly understand what living with severe pain is like. I’m truly appreciative of your help.

  2. Robin at 9:29 pm

    At work, I listen to audio books. It seems to keep busy enough of my brain processing power that I can work without the pain getting in the way. At home, I have too much going on to really get into an audio book. However, at home, I can stop and rest as needed. At work, that is not always an option.

  3. connie at 8:50 pm

    Donna Rubinetti, Hang in there with me and hopefully someday we will find that certain something that others seem to have. I keep searching. Someday… The thing I think is most frustrating is the more people that are able to use distractions for pain relief (and it’s awesome for them that they can!) the harder it is for those of us who haven’t been able to make it work to get meds to give us some relief.
    I was always a very busy person even while fighting daily debilitating headaches for 25 years. I was a foster parent to medically fragile infants ( one time I had 6 babies and a medically fragile son that I took care of while my hubby worked daylight to dark 7 days a week), I sewed many of their clothes as well as my own, crafted all kinds of things, loved cooking, baking and making candy, and home schooled my older son. When my pain progressed to my entire body and I had to quit driving and couldn’t get myself out of bed my world narrowed to a 24X24 cabin in rural Alaska. The few acquaintances I had here disappeared. My dearest hubby got me a therapy horse but I can’t ride without help since various parts of my body quit working at random times and I have been unable to find anyone willing to help even if I pay them. Going to the jacuzzi in town helps while I am in it but between the 4 hour time commitment for hubby to take me and the hour drive on terrible roads it’s not very effective so I only go a couple times a year. Thankfully I have the best hubby on earth who is gone to work 15 hours a day yet has taken over all my duties without complaint. Other than constant debilitating pain I have a wonderful life but it’s very limited.
    I tell you this so you can see that I am NOT just laying here feeling sorry for myself and that at one time I had a life. The only way I have any life now is with pain meds. I want to do all the things I used to but realize that is a pipe dream. I have tried every alternative type of pain control other than injections. I refuse them because my pain issues are too widespread. I was told it would require 200 deep injections a month with no guarantee they will work. NOT going there! I tried bio feedback for a year, going into office 3 times a week, with zero success. I have tried herbs, special diets, distraction, drugs that had horrible side effects and lord knows what else. My only relief is opioid medication at fairly large doses which give some relief without any side effects. Sadly when the powers that be look at pain control they don’t see that people are all different and tend to believe our pain isn’t what it actually is! Sometimes I feel that those people who can use alternative therapies are just making it harder for people like me whose pain doesn’t respond to them . I am being taken off most of my meds and the daily headaches that I hadn’t had in years are back. It makes me angry. It’s not fair!
    Sorry this is so long and I thank those of you who take the time to read it. I guess I needed to vent.

  4. connie at 7:29 pm

    Thank you Jo. That’s what I have been looking for for years. (((Gentle hugs)))) peace

  5. Angel at 2:14 pm

    Distraction is the best DIY therapy out there! I’ve set myself a rigorous schedule of distraction daily. It’s really helped me cope with my pain and not being able to work. Forcing myself to walk everyday do yoga everyday read, paint, shower and do my makeup these things have really helped me. They may be only small things but they’re keeping me out of bed longer and feeling human again. Hopefully like you I can add travel to the list someday! Enjoy your mini vacation!

  6. Donna Rubinetti at 1:01 pm

    Unfortunately my experience has been similar to Connie’s. Lately even cool or warm swimming pool water’s been unbearable. I fear I must be doing something wrong because I can’t get any relief. It’s terrifying!

  7. Melanie Ross at 12:54 pm

    Yes Connie – I hear you! Your comment only reinforces something that’s become obvious to me in recent weeks, mostly because of recent posts through national pain report. And that is, that each and every one of us is completely and totally unique when it comes to our pain, and how we’re able to deal with it (or not!) Some have more pain, some less, some have different types of pain, some have some help through things like pain meds, some use other non-traditional medicine, and some are better at finding “distraction” from their pain than others, for whatever reason.
    A lot of the picture is also painted by things like whether we have a significant other in our lives, whether we have the independence and freedom that owning a car and being able to drive can bring, whether we have a support network of any kind, how many others we are physically responsible for, and what our income level is.
    I’ll use myself as an example, since that’s the one I know best.
    I have been disabled since 2004, and have not been able to afford to own a car since then. I have not been in a relationship with anyone who owns a car since 2008, and don’t currently have a significant other. I live in a semi-rural area with limited bus service (no Sundays or anything after 5:30pm, daily). Before developing fibromyalgia in 2015 my main means of transportation was my bicycle. I would generally ride about 5 – 10 miles a day, and I loved the release I got from the exercise. (Because of how little I could carry at one time I would usually need to use the bike to go grocery shopping about 3 or 4 times a week.) Luckily a couple of neighbors would help occasionally with rides for things I couldn’t carry on the bike.
    Now my pain level won’t allow bike-riding, so I’ve had to adjust by walking and riding the bus instead. The bus schedule doesn’t allow for anything that happens during evening hours.
    I have not been prescribed any pain meds for my fibromyalgia pain, and I don’t take any over-the-counter meds either. The only “remedy” I’ve found that takes the edge off my pain is not currently legal in my state.
    The other thing I can now point to and put a name on is what I’ve been using for years, to avoid just laying around feeling sorry for myself, and that is distraction. I actually truly believe that all chronic painers HAVE to use some level of distraction DAILY – otherwise we wouldn’t make it!
    I’m lucky enough to have a yard where I planted a garden – it is my joy – and I’m grateful to have it. (Though this summer’s weather was brutal – 130 degrees in the sun by ten am almost every day!) But at least there are windows of tolerable temps in the very early morning, and again in the evening.
    I also LOVE cooking – and that is a great distraction. The infinite range of on-line recipes is mind-boggling.
    When I was younger, and when I had a car, I would love to go on adventures – hiking, backpacking, camping, and exploring. I miss those days. I’ve had to accept the fact that so many of those possible “distractions” are, in my current reality, no longer available. I could have become bitter and resentful about my situation, but I also have a sense of spirituality that doesn’t allow seeing life that way.
    Which leads me to my closing comment, which is that I would truly love to explore other ways that people have found to “distract” themselves from their pain, or from the life reality that their pain scenario brings. I guess if there’s even only one thing that could be found by listening to the online version of the “pain distraction event” coming later this month, I would be grateful!

  8. Jean Price at 12:50 pm

    Great article, Cynthia! And it’s important to name something which we often use without giving it a name or its due!! Distraction is used by many people in pain who don’t necessarily call it as such! A visit with a friend, prayer, an uplifting tv show, a good book, or small hobbies can do a lot for our outlook and shift our focus on to something else besides pain!! (One down side that can happen is the flood of increased pain that inundates us when the distraction has ended, and this is always hard to deal with! Extra activity with the distraction can sometimes increase our pain and then we are left flattened and having to recoup…yet still better off because we are uplifted from actually DOING something or ACCOMPLISHING a small goal or action we had enjoyment from!). I have a neighbor who doesn’t bake or cook and I used to get a lot of pleasure “using” her for my therapy…that’s what I told her….when I baked a cake and shared it!! The same goes for my plants and the “babies”I raised from seeds or clippings to be given away! Sadly, I have lost the ability to both cook and mess with my plants…two distraction I counted on a great deal. So now I am trying other things to help me, yet with a decrease in most activity…this is harder than I expected. My writing helps, and a prayer group on line I joined does too. But I long to bake and garden some, still. I loved water exercises and thought of putting in a pool until I started having major pelvic pain and found my pubic bone was separating. So the water therapy is a big no for now, since it exacerbates the pain and increases the separation. My imagery and my phone calls to friends and family still give me a breather from acknowledging the pain, and my grandchildren are often my best medicine…just looking at their pictures on Facebook brings a smile and a sense of joy that helps so much when life has gotten so much smaller! I have a friend I can call and ask her to distract me by telling me what she has been doing lately, and I’d recommend this for anyone with persistent pain! Especially when they are a compassionate person who understands the pitfalls of life with pain! Even a fellow pain patient can help with this! It’s all perspective, and how we deal with life as it is, getting the most out of our medication and the most out of life when pain limits us! And distraction is good medicine any day of the week! We sometimes will be faced with changing what we had previously used, yet there is usually something out there we can try and depend on to do the job…even if it’s more passive than active.

  9. Bob Schubring at 12:27 pm

    It can also be argued that these “distractions”, are not distractions at all.

    By engaging in pleasurable activity In moderation, we trigger endorphin release that moderates pain.

    The opioid pain drugs are plant-based knockoffs of the endorphin molecules we make in our own brains, in response to pleasure.

    By rediscovering that pleasure is pleasing, we experience Achievement. That is, we predict what will be pleasurable. We do that, We feel the pleasure, and we understand that we know how to do good things.

    Self-esteem is a gift that nobody can give us. We experience doing good, and we feel we are good. We sit and suffer, and we feel we are not good.

    A distraction that makes us fearful or angry, actually makes the pain worse instead of better. It’s more than just distracting, when your doctor is charged with a crime for treating you, and you need to find care. But this angering, horrible distraction, only makes your pain worse, instead of better.

    Even people who don’t have CRPS, have similar experiences. Distractions caused by some mean person doing us harm, make our pain worse. Doing something in which we take pleasure, takes away the hopelessness we feel, when chronic pain inflicts itself on us.

  10. JoDawn at 12:18 pm

    I think my best distractions are-
    1 laughing hard with family & friends that might as well be family! That’s awesome!!
    2 Books. Books & more books!! Better than TV because you have to use part of your brain for the actual reading, and part for all the imagination of voices, faces, inflection, etc. I’ve even become a beta reader for a couple of amazing authors! 😃
    3 Binge Tv series. I’ve got the memory of a steel sieve. But, watching the same show all the way through actually works!
    4 Mix 2 with a bubble bath! I use a kindle, double bag it in ziplock bags and enjoy! Be sure to add Epsom salts to your bath & maybe a couple of drops of lavender oil. Ahhhhh.
    The only tough part is getting out after being so relaxed. My hubby knows the drill, help her out & into terry cloth robe. Wrap towel around hair & make sure she gets in the bed. Wet hair can get untangled later. 😊❤️

    Looking forward to learning more soon! 17 days & counting!
    Sept 23rd!!

  11. JoDawn at 12:05 pm

    Connie-
    I hope someone will say something (maybe on the 23rd if you can tune in) that will “click” an idea in your brain!
    (((((Gentle Hugs)))) & God bless!
    Jo

  12. John S at 11:41 am

    Biofeedback- Relaxation- Guided Imagery are in the same ball park.

    These can be very helpful for those of us in pain. I use them more as a Sleep aide.

    Back in 1987 it was just called – Self Hypnosis!

    Thanks,

    John S

  13. Heather at 7:41 am

    That’s awesome, and water therapy by far was the absolute best therapy I ever did. We even went an bought a large above ground pool just so I could continue and when I have high pain days, let me tell you it just melts away. I get in it quit often just for the benefit I received from therapy and try to continue those exercises. Some days are harder than others but it is super for the body. Keep doing what your doing. Stay strong.

  14. connie at 5:19 am

    It’s awesome that distraction works so well for you. The things I most enjoy would be making love and riding my horse. I can manage them a couple times a year but endure more pain in the midst of my emotional pleasure. I don’t understand why it works for some and not others. If I could figure out that answer perhaps I would get relief from pleasurable activities. I read voraciously, knot and crochet a good portion of my waking hours and find NO relief, in fact I usually end up in more pain. While I am happy to hear stories like yours,knowing that someone finds relief, it makes me feel like there is something wrong with me that I can’t make it work@