Abandonment Issues

By: Cynthia Toussaint, Founder, For Grace

February 17th, 2008 • Living with Chronic PainPrint Print

My abandonment issues began in 1969, when my father jumped off of a bridge to his death. I was the middle child of five and quickly began to play a “mother” role to my siblings. I believe it was in part the trauma of my father’s death that brought me to my life partner, John. John’s commitment has remained absolute for nearly 28 years. I’ve always known that he would never abandon me, no matter what, and I joyfully admit that I love being the center of this extraordinary man’s universe.

Before my illness, my family was unusually close and loving. I forever felt cherished by my mother, sister and brothers, along with the endless circus of friends who marched through our house. There was nothing more important to me than the connectedness of family and community.

I never would have believed that any family member, or to a lesser degree friends, would abandon me for any reason. It’s been perhaps my most painful lesson to experience the abandonment of most of these people, due to my chronic pain illnesses (CRPS and later FMS as well.)

I attribute this shattering abandonment to several things:

Many of those near and dear couldn’t handle the life-altering change that came with my illness. I think some of them suffered survivor’s guilt, and perhaps feared that it might happen to them, an unpleasant reminder of their vulnerability and mortality.

Or maybe they didn’t want be around someone so sick and angry. I was once happy-go-lucky Cynthia. Then I became the always-in-pain, mystery-horror-that-won’t-go-away sibling/friend.

I now realize that my family and close friends were also “collateral” victims of my HMO’s abuse and lack of care, as they too didn’t have the dignity of my diagnosis for nearly 14 years. They were all told I was nuts!

Perhaps nature and our culture dictate that we leave the sick ones behind, particularly here in America — where community and family are not cherished (e.g., we warehouse the elderly, our families are spread out geographically, etc.) Also, in our culture, the ill are supposed to get better or die. Most invisible diseases don’t follow that ” rule.”

While my head understands the rationalization of this abandonment, the resulting pain has not lessened in my heart. Twenty-five years into my illness, I’m still in shock, profoundly hurt, at times extremely angry, forever sad.

Severe chronic illness seemingly mandates isolation, which is the worst part of the pain experience for me. I’m a person who thrives on social interaction and personal connection, and I have more love inside of me than I know what to do with.

I now realize absolutely that having people stay by my side, supporting me, is what I’ve needed most to survive. I can embrace the “innocent” disease, but I still fight to forgive the willful abandonment of those near and dear.

I’ve always felt as though I’ve committed a crime, my punishment being like prison’s solitary confinement. I thought I would be exonerated and forgiven when I received my first diagnosis. I was wrong.

I am now so fearful of abandonment, it’s difficult to let anyone in, to truly trust. I believe that if someone should come into my life, and I present the crushing reality of it, they will most certainly run for the hills. The full-blown CRPS experience is just too much for the human animal to witness, though I’m certain there are phenomenal human beings who are exceptions. Certain, only because I know two of them.

I could never have discovered the super-human strength of John and my mother if I had not survived such devastating illness. Also, I could never have fathomed the depth of their love for me. And It is that forever love, strength and support that holds me up and pushes me forward.

I have an absolute certainty that I will never be abandoned by John or my mother. I believe very few people in this world can ever truly trust a single person completely. I don’t have words to express how blessed I am to have not one, but two of these angels in my corner. This is one of the essential reasons I have been able to survive a quarter of a century with life-altering pain.

Cynthia Toussaint is the founder of For Grace, a nonprofit organization raising awareness about gender bias in treating chronic pain. As a leading advocate for health care reform in California, she has been featured in media including The New York Times, The Los Angeles Times, Public Broadcasting System (PBS), and National Public Radio (NPR). Cynthia has Reflex Sympathetic Dystrophy and fibromyalgia. Prior to her illness, she was a professional dancer, actor and singer.



Comments

Cindee Rice February 19th, 2008

Through my tears reading Chynthia
s Abandonment Story…my heart is so moved. Her story touches a central core in my life.
Although my dad did not abandon me in such a severe way. I feel abandoned by both parents, as if they never were there. I don’t remember one hug or one ‘I love you’. ( I was ill many times as a child and adolescent). I was determined to have that ‘happy, loving, close, honest, open family that I dreamed of. I would be aGOOD mom. After trying SO hard to keep my marriage together and the merry go round of my husbands abuses and unfaithfulness I nearly died. I was ‘struck down’ with a terrible case of the flu that never went away and 25 years later learning to live with increased chronic pain after surgery 21 months ago.
My children’s dad abandoned them 9and me) 15 years ago.
I have to say my extended family never has been a support, they continue to stay away from me,. I think some of them realize that the pain and illness are real, but do not understand why I can’t ‘just get better’ and ‘get out more’ and ‘come to see them’.
A repeated hurt is when they come to visit my siblings but don’t call or stop by to see me or make the effort to see my children.
There is still great dysfunction and denial/
My children and I have learned to rust in the Lord as our only source of hope, love and survival. They truly are wonderful and that part of my childhood dream has come true. Although this CP and illness have been hard for them as well, they have ‘stayed by their mom through thich and thin and we have a close, loving. open, honest family. I am blessed in the midst of pain and know that they will never abandone me, nor me them and that the Lord is the only one who ‘sticks closer than a brother’. My heart is overflowing with love towards God and my children and two g-babies and to all of you who suffer with me even though we have not yet met, we stand together heart to heart.

Rochelle Odell February 19th, 2008

You are indeed on of the lucky ones. Cynthia. My family is spread across the country and I am so afraid if I leave California, I will lose thestandard of care that I have become accustomed to. My daughter, who was a God send during my first grueling six years in my now lifetime battle with CRPS/RSD, however, she was married to a Marine Captain. He got out of the Marines, and they moved to the Dallas. Tx area and their marriage soon dissolved. She moved to the Austin area where she now resides. I feel stranded and so alone. I have friends, but only a select few who truly understand what I am going through.

My current pain doctor has told me the only other State where I would be able to get the medication and doses I am on would be Texas, but I am so afraid to make the leap. I have put together a twelve page history from what triggered my battle with CRPS and am thinking of getting copies made and send to pain centers in the area where my daughter lives and see if none freak out at the meds and doses I am on just to function. If I should get any offers, I will consider selling my home and leaving the State I was born in and love dearly, knowing I can never come back to.

My mother was a raging alcoholic so I never really had a mother, and she did a great job at destroying our family. My Dad remarried. to someone younger than my daughter, but she is Portuguese and it’s very common there and the joy that came out of their union is my 17 year old half sister. But they live in Georgia and I know I could never get the care there I get here. I have been abandoned my whole life by those closest to me, and it’s a real problem for me. Now that I am 61, I realize I don’t have as many years as I used to think I would have. I had a wonderful job, was a volunteer EMT, was a National Ski Patroller, left aerospace after my children left home and returned to school to finish my degree and become a Trauma Nurse, but like you and everyone else who has been struck with this monster, I am sure feels the same way, the rug has been pulled out from under us, and all the physical things we used to do, we can no longer do. I used to be an excellent snow skier, water skier, I would roller skate 2 hours a day, but those days are long gone as my balance has left me too.

I am working on trying to develop an organization to educate Emergency Departments about this monster and if it takes off, I won’t need to move.

Sylvia Brown February 19th, 2008

Cynthia, I am so sorry about your Dad. What a horrible thing for your whole family.

I hope you’re feeling better these days, and that your exercise is helping. I know exercise is an important part of helping RSD. Please keep in touch.

Love, Sylvia

loolwa February 19th, 2008

I want to thank Cynthia for her courage in honestly sharing her story. All of the people that I know who navigate through life with chronic pain — myself included — have experienced some form or another of abandonment. I feel that, ironically, by sharing stories of abandonment, we realize we are not alone. Thank you to everyone who has left comments so far. I appreciate your opening your heart to everyone who visits this site. Blessings for strength, healing, and continued courage to all of us. Namaste, Loolwa

Baul Richard February 20th, 2008

Etiology/Cause & pathology of CRPS/RSD/Causalgia Discovered
Richard Qian of the Medical College of Wisconsin.
——The mechanisms given new physiological concepts, cure and prevention

Jan 22, 2008
Dear CRPS/RSD specialist and medical professionals:

I have discovered Complex Regional Pain Syndrome (CRPS/RSD) etiology (Causes or origins), animal models, objective diagnosis tests, cure treatments and prevention. It is first time for human being to know this in medical history. It means I have discovered the primary, major pathophysiological mechanisms of Complex Regional Pain Syndrome (CRPS/RSD). These new causes/mechanisms can give 95% explanation of all issues of CRPS and its mystery. The “Complex” is only number two which include only two easy-understanding mechanisms.

This is my theory with evidences. It does mean I have know 90% the reasons of CRPS and how to prevention and treatment with cure goal while very few pathological changes of CRPS have been known by medical professional. When we all know the real pathophysiological changes in RSD patients, it become easy to let everyone know CRPS (awareness), to prevent from CRPS for EVERYONE in the world.

Complex Regional Pain Syndrome (CRPS/RSD, which are classified under Causalgia or Mitchell-Qian Disease by me. It isn’t syndrome.) has been diagnosis for 134/70 years, human being have suffered from it over three thousands years. The detail symptoms are known very well, but little of the pathological mechanism is known. My wife suffered CRPS from April 6, 2007 and has been disabled completely. After eight months continuously basic and clinic research and thinking, I have discovered the primary/major pathophysiological mechanisms of CRPS and its’ causes. I have evidences to show them now. All Data were from Medical College of Wisconsin, Froedtert hospital and me. These mechanisms result in tremendous spontaneous burning pain (possible last life-long), long time disabled, swollen, discoloration (deep-red), temperature change (warmer or colder), pain spreading, muscle atrophy, movement dysfunction, and other sympathetic change. These discoveries give us new anatomic and physiological concepts and new research field; These discoveries have been followed by absolutely useful prevention (90% cases can be prevented), diagnosis, differential diagnosis, and treatment (90% cure rather than present pain-killer treatment.), and prognosis. These discoveries show us clearly why it is so difficult for human being to understand CRPS for 134 years. I like to give 30 minutes presentation any time to show my discoveries. I think it is easily understand by medical professionals and patients. They are totally different from present ones, from any information of PubMed. Two objective tests of mine can be set up and one to be gold standard for CRPS/RSD. Two animal models of mine can be set up which can mimic the pathological changes of patients 100% and be wonderful models for Neuroscience. My two treatment regimens will be standard to cure CRPS. My prevention procedure will be benefit to everyone in the country, including those patients going into surgery room. “The well-known CRPS mystery” will be past. I have had enough data and confidence; you will have same confidence too after my presentation. This research will benefit to 0.2–2.0 million of CRPS civilian patients and veterans cases in USA and more than triple the number in the world at least. My personal opinion will double this number, because more than 50% RSD (or post-traumatic pain syndrome and/or RSD) patients have been staying home without diagnoses and benefits, or with one of hundred of artificial (man-made) names about pain or post-traumatic pain syndromes. I have to say, CRPS isn’t rare disease, CRPS is common disease when we know causes and have gold standard of diagnosis. The present diagnosis criteria and most doctor’s diagnoses are without understanding the primary pathophysiological mechanisms, so that clinical diagnosis criteria has been overstrict, far away from truth and has missed and continue missing very high percentage of patients anytime.

I have designed all procedures, animal models and objective tests. My animal models will be completely as same as human being’s CRPS pathology and causes. But I need an offer of assistant professor position in USA to continue the work now. Is it absurd? Absolutely not. It is only me, who am under this situation, have unique medical training, who am a doctor and scientist without professor title, can discover these mechanisms. I will apply NIH grants to finish the project with your support and offer.

Now I have my MD background and graduated from famous medical school, 10 years full-time basic scientific research, seven years research in USA, 12 years surgeon’s practice, 21 years talking with a physician and PhD, eight months of CRPS patient’s husband, and: I have thoroughly read Dr S. Weir Mitchell’s original books of RSD/Causalgia (1864 and 1872) and all of CRPS/RSD papers from Pubmed and keep any details in mind. Dr Mitchell is the Father of American Neurology and discoverer of RSD. I have tried to answer any possible questions to my discovery, and have gotten 99% answers. This gives me one hundred percent confidence about my discovery.

Genius and American medical pioneer Dr. S. Weir Mitchell described RSD but left the question of causes/mechanism to new generations. I have answered it. It is one of most wonderful and important discovery event after discovery of HIV in medical history and American history, especially Neuroscience, neurology and pain management.

Please feel free to give my letter to anyone. Any one is welcome to talk with me.

Sincerely thank you for your consideration.

Richard Baogang Qian, MD. Research Associate.
(Co-author Rong Zhao, MD, PhD.).
The Medical College of Wisconsin
Department of Physiology, Room 545
8701 Watertown Plank Road
Milwaukee, WI 53226
414-4568553 (O)
414-6303727 (C) (any time and any long time.)
bgqian@mcw.edu
bgqian@yahoo.com

C.J. Boehle February 20th, 2008

Dear Soul,
I also was one who thought everyone would be better off without me. God had other plans for me and I did not die. i was a mother with small children and had no idea that their lives would be broken by my actions.
So your post on what it has been like for those left behind has given me much to think about.

Sometimes i think this chronic pain.(I have thyroid cancer,postpolio and some kind of autoimmune stuff) is to help us weed out the superficial and get our attention. At least i am using it for that purpose.

i love so many that have been in my life but because I don’t want them to suffer with me have glossed over my physical condition and just started avoiding them so they won’t know. So your post has given me another thing to think about. Do we also abandon those that love us by not being totally candid?

So thank you for your honesty in your posts. Such courage does inspire me to consider so much. Our lives maybe compromised but they can be very rich and meaningful as you have proved.

much love,
c.j.

Nickie February 20th, 2008

I’m currently dealing with some feelings of betrayal surrounding others’ responses to my pain. Reading your choice to focus on the love of your partner and mother is so encouraging. Thank you for sharing your story here!

Brenda September 19th, 2008

I am thankful to have found your site! So many in my family believe that I am over-exaggerating, or over-dramatizing the extent of pain I endure. They, along with my doctors, it seems to me, think that I am ‘only after medications’. Darn right I’m after medications, I need relief, and yet what they do deem to give me, is, (if taken only as precribed) only strong enough to ‘take the edge off’. I admit, I do sometimes take more than is prescribed because, well, a person needs complete relief once in a while in an attempt to keep ones’ sanity. I don’t feel that is unreasonble. I have been dealing with this condition for over 30 years. I’ve been diagnosed with fibromyalgia, PTSD, Bi-polar to name a few. I personally, think it’s a viscious cycle–the pain in my mind brings about the extreme pain in my body which brings about depression and round and round. In all these years, and trying many, I’ve not yet found a doctor that I trust. What do all of you do to handle life with this and these conditions. I wish I knew. Thanks for listening, Brenda

Michele October 11th, 2008

This blog entry brought tears to my eyes. I am so sorry for your sufferings and have said a prayer for you. Abandonment is a terrible thing. I have a bipolar priest friend who was abandon by his dear spiritual community and sent miles away to live in a house for priest who need continuous care. What he needs most is love, support, understanding, connections, etc… We became close and caring friends, and due to their lack of understanding, they found fault with that too. I am trying hard to fight off feelings of depression and helplessness that I experience daily. Sharing helps.

xxx

Michele

flashy Mc loop December 3rd, 2009

Bookmarked

REBEKAH LASALA July 5th, 2010

The pain and tears are often too much…I actually hae many tears on the inside…I do not know how to cry anymore.  My bladder is constantly in pain and it feel slike someone is knifing and stabbing me in that area repeatedly every day.

I have so much to say to you…I really do not know what to say b/c I do not have the time to write what I want…except to say that I am not sure how my life is going to end up right now…I have been abandoned by my father and all “friends” who basically have abandoned me from being in chronic pain.
I suffer from chronic bladder pain and have had over 45 urinary infections in one year and a condition called Interstitial cystitis which is chronic inflammation of the bladder.
I recently had my father turn on me (and his wife) and many people have tried to get me to believe that somehow something is wrong with me and that I am a failure and have done something in wrong from having chronic pain.
Rebekah

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