It’s been a tough week in the masto community. We’ve lost two amazing people who struggled with the daily challenges of Mast Cell Disease like I have. Another special friend is in the ICU fighting for her life as I write. That’s how unpredictable this is…life is
I’ve been in that place of almost not coming back. The last few months I’ve dipped my toes in that place several times.
Please..if you know someone that is struggling, reach out, check on them, love them. Your time may be limited.
If you can, please send prayers, healing energy, your thoughts to Jeanne Johnson Griffin and her family.
We need research, we need a cure
Having faced death several times myself and recently experiencing the deaths of two very special people, I find myself preoccupied with loss.
Adoptees tend to do that of course. Our beginnings in utero had already started the prewiring necessary for our survival which was begun with loss of our mother.
Of course, I’d like to be thinking of sunshine and rainbows, but the reality for all of us is that death is inevitable. It could be tonight even.. It will come whether you’re ready or not. That is a certainty and we don’t have many of those in this life.
My life has been filled with loss as most adoptees are. The loss of our mother, our family, our heritage, our genetic markers, our family dynamics. Each future loss such as the recent losses I’ve mentioned open that old wound.
Then of course you add in the numerous losses one…
“ICU psychosis is a disorder in which patients in an intensive care unit experience anxiety, auditory and visual hallucinations, paranoia, agitation and disorientation”
November 22nd 2015 my life changed forever…again.
Exactly one year ago today.
It’s taken a year to sit with the almost daughter, the experience still so vivid. I can’t wrap my brain around everything that happened on that day and for weeks and months after. I’ve wanted to write a blog about my experiences. It’s an experience that family and friends are never prepared for and from a patients view terrifying. There are simple things you can do to help alleviate someones terror, someones hallucinations, delusions. I’ll tell you what those things are at the end.
I woke up with one difference that day. Centralized, excruciating, left, lower quadrant pain. Pain so severe that with any movement at all, a scream, dripping with tears would escape. I have a very high pain tolerance and dealing daily with a mast cell disease you are used to pain and feeling quite ill. My rational brain said go to the hospital, the nurse/patient thinks it will go away.
Being chronically ill with a complicated mast cell illness along with ME and Fibro you tend to forget what normal is, what not being sick is, what acute pain feels like vs the constant deep bone, muscle and joint pain of disease.
By noon I was bleeding heavily rectally, in so much pain I couldn’t get up from the toilet. Within minutes, my friend and the ambulance arrived. They are familiar and know my mast cell protocol by heart.
This was different. We all knew it was bad. No words needed to be spoken.
I had been feeling worse the past few months.I thought it was my mast cells acting up. I had recently started a continuous Benadryl pump with hopes of keeping my mast cells in check and me out of anaphylaxis and the hospital.
The diagnosis: pelvic abscess, bowel perforation, partially collapsed lung and sepsis.
Very quickly things became a blur. CT’s with contrast, meds, IV’s, surgery the only option. The surgeon informed my daughter and friends there was a good chance I wouldn’t make it through surgery. My systems were severely compromised due to the sepsis and of course, mast cell issues adding to the complexity.
After experiencing respiratory arrest in the OR and with continued problems with my oxygen levels I was sent to ICU. My O2 sats were 82%@7L, systems unstable, survival questionable.
Day after day, hour after hour,
moment by moment,
systems stopping and starting
There were brief moments of awareness, of tears and fears and then quickly I would be put back in the twilight zone. 15 IV bags being controlled by nurses, each system tweaked by moments.
Life and Death in The Rabbit Hole
Critical Care would continue in the 3 bed step-down unit. Constant monitoring by machines and nurses. I emerged from the rabbit hole for brief moments. I lay there attempting to reorientate myself. I tried to check out body parts but I couldn’t move. Tubes and bags hissing and whooshing were everywhere sucking out toxins and spitting into collection bags of assorted sizes.
I was very much in the danger zone, no guarantees of tomorrow.
Pale beige curtains surrounded me. I had my own tiny cubicle. Stains from previous tenants moved changing patterns as I watched in horror.
In Critical Care, the lights never go out, noise never stops, call bells constantly ring, the retching, the demands for pain meds, the cursing of another patient in The Rabbit Hole. Reality fades in and out like waves..
I hear them. I know….
They’re talking about me!
Stop whispering! Please!!
I know what you are thinking. It’s not true. They’re going to take pictures of me. Their friend, I know all about him…he’s the guy that has been stealing medication from patients drawers and little old ladies purses while they wait for answers about their loved ones.
I hear them talking.
I whisper when my friends visit. Pointing, desperately gesturing in attempts to have them make sure my purse was safe…zipper side at the back. They don’t understand my desperation but they patiently show me that everything is there and quietly close the drawer exchanging looks of confusion.
A constant stream of doctors, nurses, phlebotomy staff, physio, dietary, more blood work, new bags of nutrition added to the several already hanging. A whirlwind of medical necessities keeping me alive. To them, I speak appropriately. I know my eyes show my terror. No one asks.
I can’t tell them about the guy across from me and his friend and the many changing patients beside me. I know they wouldn’t believe me. Each one is part of the rabbit hole. One is chanting Native prayers and putting spells on us with his computer coding which I know nothing about. The other, screams obscenities while he pulls out tubes, blood and feces splattering over the floor oozing under my curtain.
At night, the sounds are deafening, bells ring louder, a tangled tube is pulled out. I call for the nurse to help him. I can’t yet move myself. My left side is so swollen, hot and painful, from shoulder to hip. My trusty mast cells coming to the rescue in crowds, building the fluids and swelling until it looks like a raw slab of meat plastered on my side. I drift off and awaken to screaming. My voice, screaming for help. The nurse said it was night terrors.
They can only get blood out of my foot. My body hangs on to each drop with vengeance. I don’t remember how many times I was taken down to have CT scans with contrast to monitor the abscess and lung. No easy feat considering the tangled puzzle of tubes and machines. The people in nuclear medicine wore makeup..heavy makeup.Almost like clowns I thought. I think they were making a movie or something. I didn’t dare ask. I was always left right by the nursing station where the other patients in their tiny cubicles could see me. I could hear the whispers between them. They were laughing because my book was on the TV but they didn’t believe I was the author. I didn’t correct them. I couldn’t look at them so I lay quietly, tears rolling down my cheeks, eyes closed. Even then the constant movie that played in my mind didn’t stop.
And no one knew.
So many other stories, all with a few pieces of truth. Helicopters so close I could hear the pilots and nurses talking. I was sure they were getting rid of me. The drones that my roommate would throw over and under my curtain. The look on certain nurses faces when I rang the bell. The chaos in the hall. They had placed tape around an area in front of the door. I couldn’t understand. I slept with my buddhist mala for safety, reciting mantras to keep the constant voices subdued in my head. It didn’t really work.
I tried sending random garbled messages, despite the fact I couldn’t see my phone letters. I had to get someone to help me. I managed one message.
All it said was HELP. No one came.
I could feel the energy drain out of me. The simplest conversation left me feeling spent, drenched in sweat, wanting it all to end. The pain was endless and uncontrollable. It was like being on a bad acid trip back in the 60’s. One that didn’t end.
I don’t scare easily. Or at least that’s what I thought. Until the Rabbit Hole sucked me in, that is.
I’ve never been so terrified, nor felt so alone as my month-long journey dragged on.
You can experience flashbacks for up to a year and it creates PTSD. Another experience to add to my already full box with that label.
The prayers, the energy and most of all, my two friends pulled me thru. It’s times like this you find out who your true friends are.
I wanted to write about this because it’s not uncommon after someone has been in the ICU for a while. The multi cocktail of medications that keep you alive but living in the Rabbit Hole can often create ICU psychosis. Having been an RN for many years, the last 20 spent in Acute Care Psychiatry I felt I understood my psychotic patients. I didn’t. Now I do. It’s so real, so frightening, so isolating. My heart goes out to those that suffer with psychosis, schizophrenia or anything that creates a Rabbit Hole Experience.
Here are a few simple measures that help someone who is psychotic: Gentle reassurance that they are safe. Gentle touch, holding a hand, words of love and safety. Gently pointing out things that are real such as my “drones” that were sprinkler heads.
Understanding. Compassion. Love. Your presence, your composure and quiet voice.
This year has been challenging. Physically and emotionally. My Mast Cells are still not settled creating a physical nightmare. Some days, the tears flow freely and thoughts wander to places I’d rather not go. I now have a piece of my bowel on the outside of my body. My world is dictated by my medical issues and mast cells.
I’ve spent a year in The Rabbit Hole. I’m so tired, so sick. My life has been reduced to living in a bubble and hospitalizations.
I’ve been quite ill the past year. I’m going to try and start blogging again. I have half a post in draft describing my experience post ICU. I thought I’d repost a few blogs to remind myself and others of why I blog. Namasté
Maya Angelou believes that unless you love yourself, you really can’t be trusted. She quotes an African Saying which is:
“Be careful when a naked person offers you a shirt.”
Because of relinquishment, trust is difficult for adoptees. I know everyone experiences trust issues over their lifetime and most are able to repair the damage. With adoptees, that first betrayal never leaves. On top of that you have no genetic markers, no history. In my childhood I wasn’t able to trust my adoptive parents, and running away experiencing life on the streets as I describe in Finding Heart Horse certainly didn’t foster trust.
When trust is destroyed at such an early age in adoption, it takes effort and practice to regain. Whether it’s in…
Claire will be at the Nanaimo North Branch Vancouver Island Regional Library at 6250 Hammond Bay Rd, Nanaimo, BC from 6:30 to 7:30 pm. “Finding Heart Horse” and “The Wall of Secrets” are books of hope and a portion of the proceeds goes to Covenant House, Vancouver, where sanctuary is offered to more than 1,500 street-involved youth every year.
When Claire Hitchon began writing, she was simply trying to deal with the trauma and anguish of an adoption experience that had gone horribly wrong and which seemed to have marked her for life. Somehow the writing process took her much further. The writing was meant for personal transformative healing, Hitchon says. But now, having resulted in two published books, her words are helping others who share some of her experiences with an adoption system that does not look after a child’s needs. “There is always, always hope,” she says.
The first book, “Finding Heart Horse: A Memoir of Survival” won first prize in the Hay House non-fiction contest in 2013 and the sequel, “The Wall of Secrets: Memoir of the Almost Daughter” was recently published by Balboa Press.
In “The Wall of Secrets,” Hitchon reveals her years of abuse and neglect, the adoptive mother who treated her as an emotional punching bag and her self-destructive years on the streets of Toronto when drugs and broken relationships helped keep her painful past at bay . . . for a time.
By disassociating from all the evil in her past, she somehow carried on and this story also reveals Hitchon’s resilience and core strength as she gets herself free of drugs, earns an education, raises a daughter on her own and discovers fulfilment working as a registered nurse.
And through it all, she speaks of the yearning to belong, to fit somewhere, for the sense of family she has never known, a search that proves gut wrenching, complicated and painful. And as she writes through all of this, forcing herself to examine her most painful experiences, reliving all the shame, hurt and despair, she works toward wholeness, health and acceptance. And in the process, she offers hope and encouragement that if you have the courage to face the past and all its demons, work through the pain, a better future can lie ahead.
“With these books, I hope to challenge belief systems and give hope that lives can and do change,” Hitchon says. Writing “The Wall of Secrets” Hitchon says, in dealing with her own painful past, she allowed herself to move beyond her story, to rid herself of the feelings that were poisoning her. She was even able to nurse her abusive adoptive mother, caring for the dying woman who had treated her so badly for such a long time. To do so, Hitchon, at first, had to simply treat her as she would any other ill person needing a nurse’s care. But, ultimately, Hitchon says she has been able to find for her adoptive mother the forgiveness and compassion in keeping with her Buddhist faith.
Now living on Vancouver Island, Canada surrounded by the natural beauty of mountains, forests and ocean that she loves, fighting a daily battle with a rare mast cell disease, Hitchon continues to write and advocate for adoptees and youth.
A controversial topic in the adoption world. Language, names, history. I didn’t have a name. I have been underfire many times for the use of the word “birthmother”.
Karen says it well.
There was a woman who gave birth to me yet never named me. I had a woman who was to care for me, yet hated the sight of me.
I’m an adoptee who never had a mother, was never mothered. I’m one of the many motherless daughters.