Pain World Misfit

Pain World Misfit

By Cynthia Toussaint.

I was recently reminded that just because we women in pain have the strength to re-invent ourselves we don’t get to live the lives we planned for and dreamed of having.

As a 35-year high-impact pain sufferer, I’m proud to have taken what I have left to help others avoid my fate. After feeling my life was stolen from me and considering suicide as my only option, I pulled up my bootstraps and made a wise choice – in fact, one that makes the world a better place.

You’d think that would be enough.

Not even close. Even though I’m passionate about my pain awareness work and I find deep meaning in helping others, I’m constantly unfulfilled. You see, I’m a performer first, always have been. Singing, dancing and acting are what I believe I was put on this earth to do. And that will never change.

Cynthia Toussaint

Many years ago I was being interviewed by a journalist for what turned out to be one of the first in-depth, high-profile articles about what was back then called Reflex Sympathetic Dystrophy.  The writer seemed charmed by my tragedy-to-triumph life. She nodded knowingly while asking her last question. “Cynthia, if you could go back and change anything now, would you?”

I stunned Mayrav when I answered, “Yes, I’d change everything. I wouldn’t have gone to ballet class the morning I sustained my injury. I would have lived the life I’d prepared myself for. The life I had to have, the one that would have made me happy.”

While this longing and discontentedness is always simmering, it recently hit me hard and unexpectedly. I started a LinkedIn account because For Grace is seeking volunteers for our September pain summit. That, and colleagues have been needling me for eons to start a LinkedIn profile.

After setting up my page and connecting with a few folk, I got bored as social networking has never been my bag. I love face-to-face, voice-to-voice. So the devil got into me a bit and I started searching LinkedIn for people from my past. The good, the bad and those who left and broke my heart.

In the process I connected with an old college roommate. Andi left long ago, but I’ve always felt a strong bond with her. She’d planned to go into law, but after observing my aspiring Hollywood life, changed her path and is now a top executive with a major entertainment studio.

Through the magic of LinkedIn, I could see who Andi’s connections were. Producers, actors, writers, directors – all working at the top of their game in Hollywood. My heart literally ached for that exciting, creative universe. These were the people I would have spent my life with. This was my tribe.

I’m a misfit in the pain world. While I have great respect and admiration for people who dig in to comfort, aid and assist those of us with pain, and I’m proud to call many of them colleagues and friends, I flat out don’t belong. I suspect most of us feel some of the same. We long to have our lost lives.

I’m no martyr. Even though the work I do helps people, the desire to feed my soul is often bigger. We should all have the choice to live the life we want, but, tragically, when we’re struck down with high-impact pain, that’s one of the many choices that takes flight.

Most days I accept my lot and right as much wrong as I can. But some days those stars that burn so bright, just beyond my reach, make me cry.

Cynthia Toussaint is founder of For Grace, a Los Angeles-based non-profit that works on issues facing women in pain. She is also a frequent contributor to the National Pain Report.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

There are 21 comments for this article
  1. Tim Mason at 9:00 pm

    Tina,
    Two things I usually do not recommend are people for jobs unless I know them really well. I do not recommend Doctors to people for the same reason.
    However, if you are close enough to Chattanooga there are 3 great Pain Management centers in town.
    You must be willing to follow a contract and be patient as the doctor works you through various low strength medicines up to an level where you need to be. This can be time consuming but pays off. I have seen several Alabama tags in the parking lot because there are few doctors around that can walk the walk. One must enter with meekness and not smell like cigarettes. They hate that. Any doctor hates that.
    Any vagueness a person can remove about their pain via MRI reports, surgical notes go far to getting your ticket punched early in the program.

  2. Jean at 11:45 pm

    God bless you mightily, Cynthia. Again you have voiced so well what it’s like to live with chronic pain. Much love and appreciation to you.

  3. Lynn Copeland at 10:31 pm

    That is crazy. Though I’ve been so desperate I would’ve taken heroin, crying in pain and desperation. I’ve learned that I must be my own pain mngmt doctor. Doctors can only prescribe drugs and give injections. While one Pain Mgr
    Dr advises Tylenol with the Tramadol (which did little to nothing), the other PM Dr advised Advil, which helped
    but showed kidney disfuncfion
    in blood work. So my Internist said to cut out the Advil.

    My big question and concern is why would facet joint injections work well one time and the exact injection given in the exact same place not work at all? Drs. have no explanation.

    And my other dilemma is …..surgery or no surgery. Most Drs advise against it unless of course they are a surgeon.
    I’ve asked several people who have undergone surgery and it seems about 1 in 5 get acceptable relief. Others incur new problems, some get 30 to 50% relief, some pain returns after a year or 2, some are worse off, 1 lady ended up in a wheelchair, 1 now needs a cane, few were glad they did it.

  4. Bob Schubring at 5:11 pm

    Dear Cynthia:
    Absolutely there is a reason why all of the kindness and love you show to other folks with pain issues, “aren’t enough”.

    It’s intimately linked, to the reason why pain patients are persecuted.

    It even connects to such disparate issues as American racism and German Nazism of the 20th Century, and the 21st Century hate campaign directed against women, that figures prominently in religion-themed hate groups such as Al Qaeda and ISIS/Daesh.

    Here’s the problem. When we’re feeling a slight break in our pain and exhaustion, we start thinking about other people and we empathize with them.

    That feeling of empathy feels good.

    It feels so good, that we exert effort, within what we’re capable of exerting, to reach out to others and participate in their lives.

    Humans love, because it feels good to do.

    And when no one is available to help us care for our own needs, we forget about love and tend to those immediate personal needs, that absolutely demand some personal effort from us.

    So here’s the problem.

    A lot of people have the entire process backwards, in their understanding of it.

    When nobody else is helping me and I have to simply drop everything else I could do, and fix a personal problem that needs to be fixed immediately, that’s precisely what I do. If I’m caught exercising that responsibility, the backwards-thinkers accuse me of self-centeredness, profiting, self-serving action, or some similar term.

    Then, when my own needs are dealt with and I start assisting other folks I know, the backwards-thinkers see me doing it, and also have something to say. Their backwards-thinking view of some act of kindness I show a person, is to assert that I’m behaving “selflessly”. That is to say, they deny that I chose to do a kind act out of love. Instead, they pretend that I automatically, instinctively act for others, like a waterfall automatically gushes downhill or a tornado stupidly smashes things that are in it’s path.

    The phrase “Thank you” is never a part of the backwards-thinker’s vocabulary. The backwards thinker praises our foolishness at dumbly helping others, because he does not genuinely think that any thought, choice nor effort goes into human acts of kindness.

    We find many backwards-thinkers in extremist politics. They love to hate anyone for responsibly caring for himself or herself…usually targeting for blame, acts that might give a person some pleasure in the process of attending to one’s own needs. In their view, the needs we fix, in those exercises of responsibility, aren’t real. Instead, the backwards-thinkers want us to ignore every need, except for the needs that the backwards-thinkers have themselves singled out, as being of some importance.

    So, by listening to backwards-thinkers, we learn such charming pseudo-wisdom, as “It’s a waste to educate a woman.” (That from an Al Qaeda leader in Afghanistan.). Or “Get some exercise and take a vacation from your pain.” (That from a Canadian insurance executive who bloody well ought to know better.). The backwards-thinkers always assume that More Stupidity Is the Solution. Or at least, they want to see more stupidity out of us. They themselves are free to use any trick they dream up, to get what they want out of us.

    In short, these backwards-thinkers are sociopaths. They destroy life by pretending to save it.

    It’s never possible to satisfy these sociopaths, because our deaths is what will satisfy them.

    That’s precisely why I characterize the War On Patients as an act of Genocide.

    It’s driven by a desire to cause us to die soon.

    These sociopaths are our enemies and the harm they do us, is 100 percent intentional.

  5. Hayden at 6:33 am

    Dr. Langley is correct.. Methadone IS an effective pain reliever. No ‘high”. Just pain relief. It is NOT for everyone. I have been told by my pain management doctor that there is even a “test”? that can be done to see if the synthetic opioid will sufficiently ease pain. It has a long half-life which disturbs the authoritarians. I was in fact prescribed methadone and gained over 15 years of “work life” with the medication. I am a builder. I continued to build, physically, strenuously work for over 15 years. I have NEVER used heroin, never even seen it except’ in documentary television. I reduced myself from 160 mgs of methadone about 5 years ago down to 100 mgs of it, on purpose. It was in my best interest, health wise, to remain active. Two back surgeries that did what they were supposed to do yet, there is still intense pain. I was placed into the ‘failed surgery syndrome” category. The pain is real.The 100 mgs of methadone amount was sufficient with exception of a few days per month. I have been reduced from 100 mgs to 20 mgs of methadone. No benzodiazepines taken with it.with it as I was content with the sufficient, effective pain relief. I understand that benzodiazepine with the methadone can depress breathing. After reduction to 20 mgs of methadone per day, the pain is intense enough that I could not sleep, could not work, no income. I am being titrated to an extended relief form of opioid medication that costs $500.00 for 30 tablets( I am insured though). I am now prescribed 30 tablets that state “take one tablet every 12 hours”. What about the other 12 hours in a day? 30 per month is all the “conversion chart” from the mis-guided line is all the pain management physician can, or will prescribe. The methadone was inexpensive, worked well for me, with zero signs of any type toxicity developed as I was examined every 60 days for YEARS of use. Methadone has been purposely attacked. I believe that experienced caring physicians realize that it is an effective pain reliever. No kickbacks to the others? However the methadone clinics are alive and well. At least in my state. One can receive as much as 150 mgs of liquid, or more, instant acting methadone at one daily dosage. It was as much as 300 mgs, at one dosage daily before the mis-guided-line. As long as you have the cash. ?????? Big pharma is NOT going to “lose” money with CDC mis-guided-line. On the contrary, I see huge profits for them! Maybe the health insurance megacompanies will have a “say so”?

  6. StevefromMA at 6:13 am

    Tina,

    The smart Ph.D. running the Younger lab, his name is Dr Younger 😗, at UAlabama Medical School in Birmingham school is doing research on FM and other chronic pain there. See if he can refer you to a pain management specialist. He occasionally needs volunteers for studies but I”m here in MA.

  7. Tina at 11:03 pm

    Last year my beloved Pain Management Doctor was closed down by the DEA because he dared to keep prescribing for his patients in chronic, intractable pain. I found another but from the beginning I knew this doctor just didn’t care. I’ve now been abandoned by the new doctor due to CDC Guidelines. I have no hope left. I cannot function without medication. If you know of a good doctor in Alabama, please give a shout out. I’m about done. I mean that with all my heart. How sad.

  8. Leslie Turnage at 8:16 pm

    I am once again in a spot, my wonderful Dr retired, and now my care is spread far and wide. I am 4 years into my fibro diagnosis, found out my hips are deformed in both socket and femur ball, and they rounded it out with scoliosis. I have a supportive husband, and we have insurance, yet still looking for pain relief is frowned upon. Not giving up, and finding this blog is a refreshing change from the constant mindless dribble of pity I am used to reading. I know we all have bad days, weeks, … good to know there are other like minded souls, who can articulate feelings and supportive gestures!

  9. StevefromMA at 5:08 pm

    “My desire to live my active life style is alive and burning a hole in the very fiber of my being – that one frayed, stretched, fiber left!” Leslie , that is a very poetic description for a miserable state we find ourselves in, thx for posting.

  10. Sheryl M Donnell at 2:23 pm

    While I truly understand your feelings of loss of career, I certainly have those same feelings, it is very sad to hear you say you look at the rest of us and don’t truly feel we are your tribe but the Hollywood glitterati are. You truly have no idea where your career would have taken you. You were too young and never actually achieved greatness and lost it. You are imaging something you would have lost. You must know hundreds or thousands of aspiring talented dancers, singers, actresses that never made it. Maybe instead of focusing on something that never was, or would have been quite impossible to maintain, you should be focusing on what greater things you have accomplished in your real life including your high profile. You are very well known. You have clout. You have helped so many. Could you say the same as a failed entertainer? I wash voice performance major in college and knew so many uber talented people I couldn’t begin to count them all. None of them are well known. A few support themselves in the field. A few more are doing very well. The most talented I knew left the industry completely. Focus on the real life you lead and the real good you do. Not a fantasy of what you think it could have been. We never will know that outcome because it never happened. But be so happy you have great treatment, a supportive family, and a loving tribe that accepts and is there for you because we get what you are going through and believe you and would never leave you when the going gets tough. With the greatest love, very honestly. Sheryl

  11. Lynn at 11:54 am

    JC needed to change Dr long time ago. I use Tramadol which varies with relief. Dr gives me 90 for 30 days; it varies how many I take, usually 2 a day, but important to take prior to the onset of pain.
    Facet joint injections help half the time. I have severe spinal stenosis L3,4&5 and bulged disks, degenerative disks and arthritis. Once a very active gal jumping horses, racing jet skis, water and snow skiing, hiking…
    …..life has drastically changed.
    Surgery is last option. Help and support are needed.
    Am taking leap of faith and traveling next month. I can be in pain anywhere, but the pleasant distraction of friends and a different place can make a difference.
    Lynn 714-884-8610 text only

  12. JoDawn at 10:41 am

    Cynthia. My sweet friend & heart sister.

    I don’t think we ever finish grieving. Not for those we’ve lost and not for the dreams we had for ourselves.
    And that is ok…
    As long as it isn’t consuming and dragging us down.

    I don’t know if you’re a misfit. I think maybe you have just learned to be very honest with yourself!
    ((((((Gentle Hugs))))))

  13. William Dorn at 10:08 am

    Can you get any of your friends in Hollywood to get chronic pain patients suffering out there .The media listens when Hollywood speaks.It would be a way to make the public hear the truth maybe even president Trump.

  14. Michael G Langley, MD at 8:40 am

    jC
    Methadone was used in my pain clinic, back in the late nineties. It is a form of opiod. It is not for everyone. Some people have trouble with cardiac arrythmias induced by the methadone. Most had great results with pain controlled up to an twelve hours per dose! I had a patient that died from a reaction, after an regional hospital, in the area, sent him home without stopping the cause of the ER admission! He had been admitted to an ER near death. That is just one of the many acts of negligence I witnessed while I was in medicine! But, I was blamed for that one!

  15. Susan Clopper at 7:48 am

    Dear Leslie
    If you are still searching for help please search Thank you dr sarno. His work saved my life as well as thousands of others in chronic pain. Howard stern, Larry David, senator Harkin are just a few well known people who have been cured using this approach. Please consider this as no one should have to be suffering as you are.

  16. Susan Clopper at 7:37 am

    Dear Cynthia
    I’m so sorry that you are still living in chronic pain since I too experienced this myself and am now pain free. Please read any of the books by dr John sarno or dr Howard Schubiner’s unlearn your pain. Your pain is real just as mine was. This is not a hoax or snake oil treatment. Please go to tms wiki.org and you can find thousands of others who have been healed. Also practitioners who can help. Many of them were on your place but are now pain free. I hope this helps.

  17. Suzanne Stewart at 6:25 am

    I’m so sorry, not sure how this happened-but this article was not written by me. I just wanted people to know that this was not written by Me; nor about me.
    I love you all & will have a new article soon!
    Suzanne Stewart

  18. Signe Topai at 5:45 am

    Oh, how I love your story. In my small life, I too, felt your yearning! I may have not danced on stages but taught thousands of children my love for movement, improving their health, friendships and playful souls….I was a gymnastics instructor and Physical Education teacher. How my heart yearns.
    So, Thank you for your beautiful story. Life does go on and we must find truth, love and passion in different ways. God Bless you and may you stay in peace, joy and love.

  19. J C at 5:33 am

    I am so sorry about the loss of your career. That truly is heartbreaking. I can say that you ARE helping others, me for sure. Thank you for reminding me I am not alone. I am so sorry you have such terrible pain. Every month my doctor seems to forget that I am even in pain. Last month, she wrote that my CRPS was resolved, which is not true, i am in constant pain in both feet, and like you Suzanne, I have to take pain med about 6 am, so i can get up in an hour or two, and be able to function, somewhat. When i showed my doctor my feet in spasms, she LAUGHED at my toes severely contracting!!! She said it looks funny!!! I wanted to cry. She is very upset that one 5 mg hydrocodone doesnt last a whole day, alnd she insists 45 pills is enough for 32 days. I can take tiny amounts of pain med and get some relief, even 1/2 pill or 2.5mg can make a difference, yet she will not prescribe even 2 hydrocodone 5 mg strength for me per day. I am so woefully undertreated for pain, she has decided it is far better for HER to just leave me in pain all day, than to help me with even 2 low dose pills per day. If i take meds, within 1 hour my pain is reduced 50% but the doctor wont prescribe it. If I was diabetic, would I have to just not take meds some days? Why are antidepressants pushed everyday, when they dont work for my pain, and pain meds do! Antidepressants are very addicting. And have not helped my pain. Pain med gives relief, but not allowed???? This is a horrible thing, to know YOU COULD FUNCTION but someone wont let you have what you need to function!!!!! Has anyone tried methadone clinics for pain relief???? Is that what this is coming to? Is methadone an option? Has anyone tried it for pain? It is supposed to be long acting, which should provide longer pain relief. I have also lost my hopes and dreams, BUT I am fighting for my life to be able to have enough pain med to walk for 15 minutes, on SOME days, and to have SOME quality of life! I dont understand how a doctor can leave someone in such pain. I have had this doctor for 26 years, never needed much. I badly sprained my ankles, in a freak accident, and I have had CRPS for 2 years, as diagnosed by podiatrist, but he wont prescribe pain pills, sends me to PCP, and she puts down that CRPS is resolved! Unbelievable callousness is happening, on so many levels. It leaves a person hopeless and needlessly suffering in pain. It’s like we have gone back to the Stone Age, and have no effective meds, when in reality, it is right there on the shelf, but they wont let us have relief due to political correctness. Why is it ok to leave people suffering in pain? Man’s inhumanity to man is starkly disturbing and has no place in medicine.

  20. Leslie Turnage at 5:28 am

    Well said. I find myself constantly searching for another answer, always searching for a way to beat my pain and steal my life back. Some days, I think I cause myself more stress because my diagnosis is well documented. My desire to live my active life style is alive and burning a hole in the very fiber of my being – that one frayed, stretched, fiber left! 😉
    I do love reading articles/blogs/etc from those who still seem to have life left in them, and I will try (for a very short time if unresponsive) to help others with a list of “I can”, but find people like you and I are far and few between.

    I am new here – and am already enjoying your blog!

Leave a Reply

Your email address will not be published. Required fields are marked *