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.