It’s been years since I had much new to write about my coma recovery, which is now nearly complete. That’s why I transitioned from blogging about my recovery experience to writing about atheism and secularism in Miracle Girl. But where the two blogs intersect is on the subjects of covert awareness in the supposedly vegetative.
I experienced a one-in-a-million coma recovery. And with that brings a responsibility to speak out for those who can’t speak for themselves. As I’ve written, I’ve engaged in an ongoing correspondence with a wife of someone in a minimally conscious state (who, by the way, is improving). And from time to time, I receive contacts from fellow coma survivors who just want to converse about their life-altering experience with someone who understands what it’s like to go through it.
Yet on August 24 — the day before Coma Day, the anniversary of my awakening — I receive a very different sort of request via my recovery blog, Coma Chameleon: My Recovery Chronicles. An aspiring certified nursing assistant named Samantha contacted me to ask if I would “testify” for a mock trial taking place in her CNA training class. It involved a case study — which they believed to be based on a real court case — pitting the husband of a comatose woman against the woman’s family.
These are the details Samantha provided me:
Case study: Christine Johnson was involved in a car accident that left her in a vegetative state. She remained in that state for 3 years while being kept alive on life support via mechanical ventilator and enteral tube feedings. In June of this year she woke up from her vegetative state and was removed from the ventilator.* The physicians found she was able to breathe on her own but she would still need to be fed via tube feedings. Although, Christine is able to open up her eyes she, is unable to respond to any questions and remains completely immobile. She does not speak or show any awareness of her surroundings. In the last month Christine has developed a bedsore on her sacral area and still shows no signs of improvement. Steven Johnson her husband would like to cease the tube feedings and let her pass. He feels that’s it’s a dignified way to die. He also feels that prolonging her life would be inhumane. The parents of Christine have power of attorney and are instructing the healthcare team to keep Christine on life support. They believe that there is still a chance that Christine will make a partial recovery and maybe able to speak in the future. Mr. Johnson is taking Christine’s parents to litigation.
Other notes for the case:
She awoke for 1 year and went back into a coma (in coma for 3years, woke up for 1 year, went back into coma for another year)**
Stage 4 bedsore-bone exposed
They were married for 8 years (married for 8 years and then had the accident and went into coma)
And here are the questions she was asking me to answer:
Tell us all about your experience (would also like to know for learning purposes and as future healthcare professionals)
What did you remember when you were in a coma? Did you remember anything that was around you? (Ex: did you remember hearing people talk to you or around or next to you?)
If you did hear them could you answer? Even in a vegetative state while you were awake?
How did doctors and nurses support you?
How did you spend your time in your coma? (What did you think about?)
What were your parents, loved ones and your opinion on staying on life support and ventilator? Would you have rather been taken off and passed away? Or glad to be alive today?
Would you have rather been taken off and passed away? Seriously!???
Okay, so the questions were clearly written with no prior knowledge of my particular case. I’m guessing Samantha simply Googled for coma patients and lit upon my mostly dormant recovery blog.
At any rate, this was the written statement I prepared for the mock trial:
My doctors proclaimed me profoundly brain-damaged and advised my loved ones to give up hope for my recovery. As doctors typically do, they pooh-poohed my loved ones reports of my increasing movement and awareness. Yet, even as the doctors were shining lights in my eyes to gauge my level of consciousness, I was telling them to leave me alone so I could get back to sleep…in what I call my coma-dream.
I was experiencing something called covert cognition. Researchers have found that as many as one in five consciousness disorder patients are actually fully or partially aware, despite their apparent unresponsiveness.
I wasn’t fully aware during my coma, as some covertly aware vegetative patients are. Instead, things going on around me filtered into what I call my coma-dream. As my awareness slowly improved, my mind began weaving bits and pieces of reality into the increasingly complex dream world it had constructed for me.
I integrated into my coma-dream long monologues from my boyfriend, the book he read to me, and the videos my mom played for me. Dream-like elements such as miniaturized zoo animals holding a tea party interspersed with coma-dream elements inspired by my therapies, as my mind spun stories to explain what was being done to me.
I knew I had a trach, though I wasn’t aware that I was in a coma. At one point I rebelled against my CNAs (in my imagination). They were too rough when they cleaned my private parts due to my abrasion-sensitive skin. At one point (in my coma-dream), I refused to let them clean me anymore.
It’s important for every health professional to realize that seemingly unresponsive vegetative patients may actually be covertly aware. Though, they appear outwardly non-responsive, they’re in fact fully or partially aware. Outwardly, I seemed vegetative, yet reality filtered into the dream world my mind created for me. Despite what their doctors say, that “vegetable” may well feel pain or discomfort – as other patients have also reported after awakening.
I think many doctors and nurses become jaded after seeing so many tragic cases. I think the many of them are also unfamiliar with the latest, cutting edge research about covert cognition in the vegetative. My mom thinks my nurses were trying to gently nudge her toward eventually pulling my plug. (She would never have considered it, and neither would my long-time boyfriend.)
Though my doctors thought I was a basket case, I awoke four years ago with no cognitive damage whatsoever. I have
barely any remaining physical issues. Indeed, if you saw me you would have no idea that anything had happened to me.
I’m a living testament against pulling the plug of “hopeless” vegetative patients. I wish more people would realize that being on a ventilator isn’t really that bad…certainly not worse than dying.
I’m grateful every day that I’ve had this second chance at life.
A Mock Trial but Not a Moot Court for the Vegetative
After the verdict, Samantha informed me:
I am so happy to say that you are the reason we won our debate! Our teacher said we tied with a lot of our arguments but our first argument which was your testimony won our side! (parents side) I want to support you and your mission any way I can and I want people everywhere to be aware of similar situations like this especially for struggling families that are going though this.
I would really like to keep in touch with you if that’s okay? I would really love to help you, and others out there.
I replied that I would be happy to stay in touch with her. I can tell Samantha will make a very caring and dedicated CNA. In my nursing home room there were two patients (including myself) recovering from comas and another one still unresponsive. The issues her class dealt with will soon be all too real for them.
As you can see, my statement for the class was far from impartial, yet I refrained from directly commenting on the particulars of the mock trial case. Not so here.
In an upcoming post, I’ll unload both barrels against such potential death sentences, which are far from moot issues for too many vegetative patients.
*Woke up in this context means that Christine transitioned from a coma into a persistent vegetative state. The comatose don’t have sleep/wake cycles and therefore never open their eyes.
**It’s ambiguous whether this second reference to awakening refers to a transition to a different vegetative state (as referenced above) or full consciousness.
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