When Amy Susan Crohn was 36 years old, the doctor she had been seeing for mystery symptoms for several years dismissed her concerns and curtly told her to get out of his office and “go live her life”. Despite her protests to the contrary, “Dr. C” as he is known in Amy’s autobiography, “Dying to Live – Running Backwards Through Cancer, Lupus and Chronic Illness“, insisted the young mother of two was overreacting about her symptoms and should just learn to relax.
She listened to her doctor. She trusted him. After all, he had the medical degree and had taken oath to heal others. This blind trust would ultimately lead her through a year-long battle of harrowing proportions when her body collapsed under the weight of two serious conditions; lupus and Hodgkin’s Lymphoma.
I recently had a chance to talk with Amy and interview her about her experiences and the book that’s fast-becoming a platform of understanding for those with chronic disease.
Below is a glimpse into her journey as expressed to me and outlined fully in her hard-hitting and poignant autobiography:
1. “What types of chronic pain/illness do you struggle with?”
In 1997, Amy was diagnosed with Hodgkin’s Lymphoma and lupus. Since her 16 rounds (it was supposed to be 18 but Amy won a small victory by going into remission before the drugs cured or killed her) of chemotherapy, the cancer has gone into remission but the battle still rages on.
Due to her aggressive treatment, she now struggles with neurological impairment, vertigo, brain fog, osteoporosis from extensive steroid use, and gastroparesis as her vagus nerve was paralyzed by the chemotherapy.
She also has been clinically-diagnosed with depression, anxiety, and post-traumatic stress disorder, which is directly correlated to her lengthy hospital stays, myriad invasive procedures, and ill-treatment by certain medical staff.
2. “How long before you received an accurate diagnosis?”
Amy describes herself as a “sickly” child who endured a lasting bout of mononucleosis, which she was forced to battle in a hospital bed for lack of support from family and friends.
New research is now emerging to suggest childhood illness of this kind (mono, Lyme), can prime the immune system to turn on the body’s own healthy tissues in adulthood.
It wasn’t until she was 36 years old that she would discover how poor her health had really become and receive the dual diagnosis that would level not only her but her adoring husband and the two young sons who depended on her.
3. “How do you manage your condition?”
To say Amy managed her condition when she was first diagnosed is to give the illusion that she had some sort of control. She didn’t. Once her body collapsed under the weight of her malfunctioning immune system, she succumbed utterly and the disease managed her.
Although it has been over 15 years since her many hospitalizations and the subsequent treatments it took to save her life, Amy still requires an extensive list of medications and supplements to combat the effects of her treatment.
- Conventional – Anti-inflammatories, digestive motility aids, menopausal medications, and medications for mental health
- Natural – Integrative medicine, a gastroparesis-specific diet, oral and intravenous supplements, meditation, energy work, massage, creative visualization, and lots of sleep
4. “In what way do you believe child abuse/neglect plays a role in chronic disease?”
Amy explained there is new evidence emerging out of a 25-year study called the Adverse Childhood Experiences (ACE) study that directly ties childhood trauma to chronic illness. This comprehensive study has shown that at least two-thirds of the population has a score of 1 or higher.
The study asks only 10 questions. The higher you are on the scale, the more likely you are to struggle from chronic physical and mental health problems. If you score 4 or higher, you have an 86% higher chance of being diagnosed with a serious physical or mental health condition. The physical condition is nearly always autoimmune disease or cancer.
Amy’s score is 8. (So is mine).
In a strange twist in the study, it was discovered that a small group of children who underwent significant traumatic experiences in childhood did not develop chronic illness later in life. There is more research being done to understand this apparent resiliency to see if it can be harnessed and duplicated in the form of some type of post-traumatic treatment involving autobiographical writing, dietary changes, and a healing supplement regimen.
5. “Please tell us about your book.”
Amy wrote this book to heal as one of the primary suggestions for those scoring high on the ACE study is autobiographical writing. Diving back into the experiences of her childhood, which included an emotionally-unavailable father and a mentally-ill mother, Amy came to understand that the root cause of her illness lay in her broken heart.
During this process, Amy reconnected with her inner child and slowly rebuilt what she calls her ‘Statue’, or armor against the world.
Today, the statue still stands but Amy has learned how to allow her heart to remain open. After the death of her parents, Amy was finally able to share her story without guilt or fear of reprisal.
Taking care of the father who often neglected her in childhood helped them repair the damage and rebuild a bond.
Taking care of her mother only revealed what Amy had already known, that her mother was mentally-ill and in most ways, incapable of giving Amy the love she needed and rightfully deserved in childhood.
From page 140 of “Dying to Live”:
“Mom. You know what you’re like?” Amy asks this as she’s pushing her now-invalid mother in a wheelchair. Her mother’s response is quick, like a slap to the face. “A Black Widow spider,” she said, “because I eat my young.”
I believe it was in this moment that Amy saw her mother for who she really was and regained a certain sense of strength and balance because she knew, ultimately, that her childhood experiences were never her fault.
When you read, “Dying to Live – Running Backwards Through Cancer, Lupus and Chronic Illness“, you won’t get a clinical, detached account of disease, you’ll journey with Amy through her confusing and disruptive childhood and understand why the word “home” never held any meaning for her until recently.
You’ll gain an understanding of those around you with chronic illness and better understand your own if you live with one.
Despite the trials Amy continues to face, her enduring strength shines through in her love for her family and her decision to become a Court Appointed Special Advocate for children in the foster care system. Having adopted her youngest son, she has a unique perspective and understanding of what these children go through everyday.
Amy is a fighter. She’s a teacher. She’s a healer. Now that she understands how critical it is for children to receive the deep love and nurturing they need in order to avoid becoming a chronically-ill adult, she will never stop fighting for them.
Click below to pick up your copy of Amy’s book and be prepared to laugh, cry, and come away with a deeper understanding of what chronic illness really means: