LOST IN THE WORLD: a survivor's tale
By Joan Adria D'Amico, LCSW, BCD.

Feb. 4, 2001.  It began as an ordinary day...a Sunday...but when I climbed into bed that night I knew something was very wrong. My heart was pounding, pulse elevated, heard an unusual sound in my head like a tiny rushing stream. Being the stubbornly self-sufficient person I was, I hesitated calling 911. Within seconds or minutes, I don't really remember, I was dialing. Next memory. I found myself slumped on my living room floor. No memory of descending the stairs, opening the front door. EMT's and police stood over me. I saw their legs. "Whadidya have ta drink, ma'am? Did ya take any drugs?" barked a voice. "I don't drink or take drugs. Something's happened to me.... it's something neurological. Please take me to a hospital." I was desperate to be believed. My son, who'd been sleeping, fuzzily tumbled into the room to see me half naked, having vomited on myself, now crumpled on the floor.

"What's wrong mom?" He was alarmed... confused. "Don't worry", I said. "I have to go to the hospital. I'll be right back."

"Right back" turned into over a month later. It was about a week before I heard what had happened to me. I'd had a ruptured cerebral aneurysm...a brain bleed of 4 on a scale of 1-5. If I lived, which wasn't expected, I would no longer be me. Perhaps there would be impaired brain function, no brain function, physical disability. There's a blessing in not having a memory. I was oblivious to the severity and reality of my situation, as vasospasms threatened to destroy my life as I knew it. (The brain, Woody Allen once quipped, was his second favorite organ. It was my first.) My children, my family and friends, prepared for the worst. They knew the terrible odds: a 10% chance of survival, with probable impairment.

My daughter remembers the odds as 3%. Her terror. Though she remained present for me and at my elbow throughout.

I was plagued by an intense and unremitting headache, a very angry rash caused by Dilantin covering my body, but remained blissfully ignorant of the danger I was in. There was a bleak hour when my daughter sat in the snow not feeling the cold, in the clothes she'd worn for days. The person she most needed wasn't available for comforting her. My son paced in and out of the ICU, paced in the waiting room, gave what comfort he could to visitors, and kept most of them out of my room. They weren't ready to lose me. My visitors put smiles on their stressed faces.

My world was the Intensive Care Unit of one of the best tertiary care hospitals in the state of NY. I was busy. Every day there were pictures of my brain, x-rays of my chest (hospitals are very fussy about pneumonia), monitors of all kinds.

I began to have the illusion that the cacophony of endless noises of life support machines of the 6 or 7 patients in the room was actually music. I could hear the intricacies of Beethoven and Brahms. Beautiful, but so repetitive that I asked the nurses to please change the damned CD! They ran to report to the team. They changed the meds. They were busier than a hill of ants. They decided to install a shunt in my brain to reduce the edema. I hadn't had a fever since my teens, but I developed one that night, high enough to delay the surgery. It never did take place. I guess my subconscious was taking care of me.

One of those nights my daughter was having a particularly difficult time leaving me. She came back to my bedside to kiss me goodbye several times. In my semi-conscious state, with my eyes closed, I said "What is this....Groundhog Day?" The cinematic reference was enough to make her laugh and say goodnight. That old Reader's Digest feature was so true. Laughter IS the best medicine. My children and I share a bond of humor...they are very very funny. I did my best to contribute my share. When my handsome surgeon came to see me, I flirted with him. (After all, brain surgeons are not supposed to look like movie stars.) When I commented how gorgeous he was in a stage whisper, it was mostly to see him blush. When a therapist friend came to visit I, gave him my diagnostic impressions of the psyche of the patient in the next bed. There are few powers for the bedridden and I was utilizing what I could, as I unconsciously fought for my life.

I obsessed, I perseverated, my memory came in non-continuous flashes, my thinking was mostly chaotic. I could, however, recount my patient schedule clearly, even when I had just been wheeled out of the recovery room. I saw every hour, every name, something I'd always had to look up in my appointment book. I worried about my patients showing up for their appointments. Were they standing outside my office door feeling abandoned? And where was my new red pocketbook? Did they have it? My children endured my endless querying.

We lied to my mother, not wanting to increase the anxiety she suffered from most of her life. When I became conscious enough I asked the staff to arrange my calling her. They ran a long phone line to my bed. I was worried about her.

She was used to hearing from me and I hadn't spoken to her in 10 days. I pretended that I was home...been too busy to call...had a slight cold. She knew something was wrong, but didn't want to know. Then the inevitable moment of truth. It seemed that I was going to die, and my son brought her to see me. She was very nervous. She'd been struggling with the onset of dementia, but her confabulation and adaptations had been so skillful that we weren't aware of the nature or extent of her deficits. My illness pushed her off a cliff. Though I had no control over the fact of my illness, I'm sometimes troubled wondering how I contributed to the worsening of her condition.

We never were able to discuss what had happened. She'd had too many losses in her life. My father was not around. He had decompensated while in the Navy during WWII and within a few years it became clear that he suffered from paranoid schizophrenia. In those days there were inadequate psychotropics to quiet his mind. My parents eventually divorced and mother was a single parent. She married again some years later, a really solid and wonderful man, who died of cancer at the age of 55.

My illness was a terror she could not acknowledge. She deteriorated, though hung on valiantly for five years before she died in 2006 (ironically, on Sept. 11 th ) of the complications of Alzheimers. From time to time I get sad about not having a mother with whom I can discuss the struggles and joys of my recovery process. Given her anxiety disorder, I'd never been able to give her the "inside" story of my life. The headlines were all she could bear. I know that she loved me; she just couldn't tolerate really knowing my pain or that of any family member. My task was to protect her from further suffering, and to be the one in the family who tended to family members' upsets. (And so a therapist is born.) I can feel my sadness, for myself and for her...for the difficulties she faced in her life and the losses she endured. Emotional Spartans cannot enjoy the sticky vicissitudes of intimate contact-in-relationship.

I have two wonderful (read extraordinary) children, who were adults at the time I became ill. My son moved into my home for the next 3 years. My daughter, with a demanding job and fully articulated life, commuted from Manhattan. At first, after a month of being bedridden, I was unable to walk without assistance. I could walk, but I was shaky. I had some physical therapy to rebuild my muscles, but most of it was a matter of usage over time. Four months after the rupture, I had a second brain surgery to clip an unruptured aneurysm that was inaccessible in the first surgery. My world revolved around recovery. I could speak as I always had with some slurring, but my memory wasn't good, my attention span was attenuated and I was mostly fatigued. I repeated things. I obsessed. Okay, I perseverated (as my children would tell you). At first, I couldn't drive my car for more than 5 minutes at a time because of the fatigue and difficulties with attention. ( I rue the day that I may get too old or enfeebled to drive. They will have to pry my license out of my angry hand.) Every day was a struggle. If I had one hour a day that I felt like myself, it was a victory. My abilities to function were all there, but suppressed and distorted by the trauma to my brain. Certainly keeping my household going was beyond my ability. Shopping, cooking, cleaning, bills, legal issues. My children took care of everything. Family and friends came by to visit and helped out in any way that they could. Clients left meals at my doorstep.

My emotions were all over the place. I laughed, cried, and got scared easily. I was irritable. I couldn't be alone...alone with my fears and anxiety. For a few years I would still be on guard for signs of abandonment, real or imagined, which challenged my relationship with my (then) significant other. I had poor stimulus barrier. Noise, light, and too much activity in the room were intolerable. I'd retreat to the sanctuary that was my bedroom. It would be years before I could tolerate being in a restaurant. My world was mainly confined to my bedroom, kitchen and my computer. Email kept me in touch. Though I didn't have the staying power to sit up and write, I could receive and forward amusing or interesting stuff. I depended upon it for my daily laugh out loud and my connection to the outside world.

My children and some family members and friends are psychologically savvy people. They could be sensitive to my insides. In the face of their terror, they were brave, reassuring, calming, loving. Though I despised my limitations, I was grateful and able to allow my dependency. Surprising, because it was so out of character for me. I'd been an "adult" and a caregiver since early childhood. Though I was concerned about being a burden, I learned to enjoy being cared for. My loved ones reassured me that they were giving out of love and that it was "okay". They are very generous people. They pulled me through.

A quote from my daughter:
"Curled up in a fetal position and crying is where I started when I learned what had happened. Ironically the only person I needed most to comfort me in this tragedy was her. A thick white snow blanketed the world outside the hospital. We were buried in the fear and dread of death. Fear, anger, sadness, anxiety consumed me, overwhelmed me. I hadn't slept, eaten, showered or changed my clothes for days and weeks. The only thing we could do was hope. The only thing we could do was keep her alive. I paid her bills, called her clients, friends, other family. Fed her, held her hand, kissed her and watched the machines that were monitoring her vitals closely. Very closely. I consulted with her doctors daily. I brought pictures of her life. I cleaned her house. I kept her life going. My brother and I kept her life going. Until we experienced the life changing miracle of her survival. Through this, we learned about ourselves and our own survival."

My personal life became public in the small town in which I live and work. My clients still  worry when I don't return a phone call or email in the time frame they expect. They inquire when they notice my fatigue, as I work to keep the focus on their issues and understand their concerns about taxing me, being "selfish", and about losing me. Any healthy denial I might enjoy is not sustainable under scrutiny, though I welcome their relational honesty.

Those who've had their own major illnesses say they feel better understood, and I believe that I share a kinship with them from the inside out. One such client said:

"When I was diagnosed with cancer, surgery, radiation, etc. I really wanted you to get inside my head and understand the profound feelings I was having. Never in a million years did I want you to feel it firsthand. But now that some time has passed, the chocolate we share tastes so much sweeter, the water that we drink feels so much healthier, the time that we spend together is something that I so cherish and can't begin to compare with any other person on the face of the earth..."

Those with insecure attachment issues require greater contact for continuity and reassurance. One client (who's in the process of becoming a psychotherapist, as you might surmise from her writing) said:

"I believe that the initial trauma had a galvanizing impact on the establishment of the transference. ‘Leaving me' set something into motion...something locked into place that forever changed the work. I believe that the event of your being hospitalized and the threat of losing you triggered my unconscious memories of being unsafe.... Since I was dissociative and did not have ready access to many memories, it took a VERY strong trigger to jar my defensive structure. In essence, you caught it off guard! It is possible to hypothesize that the strong transferrential potential of our relationship was not unleashed until the sense of serious threat (threat of being left alone and vulnerable) was re-stimulated.

Another said:
"When I started seeing her again i didn't know if I should be careful with her or not. When she spoke she sounded the same but she did not look the same. I mean, half of the hair on her head was shaved off and there was a big scar across the side of her skull. She was tired- looking and I sure didn't want to make things worse. One of my key issues was that I always felt like a burden, and now I was really being challenged."

And another:
"Not having access to you in the hospital was agonizing. It didn't seem right that the boundary rules still applied with life or death situations. I began to believe that my love for you was insignificant and I felt like an outsider. I could not give you up though. I did the only thing I could think of at the time. I imagined myself inside of your head where your injury was. I kept a mental image of holding your blood vessels open. I just wanted to do something to help you stay alive. Losing you was not an option that I could fathom."

I am blessed to continue the journey with them. I'm working towards the day that I can work at this sacred occupation for more hours than I do now, as well as enjoy a lot of other things in this precious and tenuous life. Yes, it still seems tenuous, which has become foreground during the process of this writing.

A long-time friend wrote:
"What I remember is how, even at the moment you were recognizing that you were in the midst of a mystery, you remained you. At some level, despite all the fear, you did not doubt that you would continue to be you - doing the NY Times crossword, bossing around the doctors, insisting on answers. Your children were deeply afraid. They could not be inside you where that confidence lived. At some level, what you communicated is, Joan is still in here and she will be back. And I don't think, even when you were "gone" to all outside observers, you ever really were....All your struggles to make sense of a crazy father, to seek out the threads in the labyrinth that allowed you to move from who you were in high school to who you became as an adult - was all preparation for your aneurysms -- you were ready to find your way out, fortified by all the routes you explored before that time. You didn't say no to adventure - so you were ready when the time came to find a way through the canyons of a mind that had become alien..."

Over time my energy has increased and the ratio of hours of functioning to utter fatigue slowly reversed. My mind functions better and my life seems as if it might return to some of what it had been, though I still cannot predict the energy I'll have on any given day. There's no medical explanation for my survival nor my recovery thus far. My skilled surgeon and the angels who were my nurses and aides, got me through the surgery and immediate aftermath. As for the long term, at least two neuro "experts" said I wouldn't recover more functioning than I had after the first year. They were incorrect. I, and those who love me, wouldn't accept that. Six years out, improvement continues. I believe that their love, help and prayers, my unremitting determination to have a life worth living, and maybe just plain luck have brought me to the place I now am. I still have a journey ahead of me, but I'm not complaining. I'm in that fortunate 10%. Yes, that close margin scares me. Scares me sufficiently to still not have read the medical records from the hospital. Mostly I live each day amazed and grateful for what I have.

PAIN IS INEVITABLE, SUFFERING IS OPTIONAL (a Buddhist teaching)
A story goes that a Zen monk whose humble hut had been robbed of what little he had, looked out his window and said that they couldn't take away the moon. For me and mine, it seemed that they had. There was a rip in the curtain of reality that seemed irreparable. Now, I have no doubt that humans are a resilient, adaptable species. I worry a lot less, and I expect a lot more from others. Sometimes I'm just testy and impatient with others and they DO let me know about it. I invite them to. A few relationships have run their course, and new people have entered my life. I've allowed myself to develop healthier dependencies, which my "hardball-playing" loved ones cultivate and even insist upon. I've learned that it isn't possible to go back from where I started, but there is always a new place from which to continue. We continue to heal. We talk, cry, laugh, process, remember, forget, philosophize, reconstruct expectations. Most precious is our sense of community and not sweating the small stuff. We're grateful for each day---together.  I can be my imperfect self and be loved--a practice I continue to work at--just as, to the best of my ability, I give that acceptance to my loved ones.

NAVIGATING THE UNKNOWN - for those living and working with people with catastrophic illness:
Assume nothing. Inquire, inquire, inquire. Though we cannot really know another's suffering, we can demonstrate our willingness to hear their experience.

Attune rhythmically. Recovery takes all the psychoemotional and physical energy one can muster. Misattunement is exhausting and isolating.

Be honest in service of helping the person to integrate their experience, short of injury. Defenses need to be respectfully negotiated, at a tolerable pace.

Be WITH. It's hard work to stay open to someone with catastrophic illness. Ram Dass, in Compassion in Action , refers to it as learning to "keep your heart open in hell".

Remain grounded and optimistic , without minimizing or denying.

Follow the person's lead, and encourage to reach a bit beyond limitations or to slow down, as necessary.

Chop wood, carry water. Oh, and bring great food.

It's essential for caregivers to get needed support so that you may be in contact with your self, preserve your health and the quality of your life.

This human being is a guesthouse.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes as an unexpected visitor.
Welcome and entertain them all!
Even if they're a crowd of sorrows, who violently sweep your house
empty of its furniture, still treat each guest honorably...
They may be clearing you out for some new delight...
Be grateful for whomever comes...
Rumi, The Guesthouse...