It was about 7:30 on a Tuesday evening, March 1, 2005. I had turned 53 a month earlier and had just come home from my psychotherapy practice in downtown Syracuse, New York looking forward to relaxing in our cozy home in the country. My husband was cooking out and I had a glass of my favorite red wine sitting in front of me. I had made a salad and we had just begun to eat when, suddenly, I had what felt like an explosion in my brain. I grabbed my head, yelled and said something like “Oh my God, I think I’m having an aneurysm!” My husband looked at me as though I had lost my mind, but when I dropped to the floor moaning and yelling, “Call 911” he got scared and knew something was terribly wrong.
The ambulance was there in a few minutes and I was thankful for how gentle the female attendant was. She asked me questions but I couldn’t really talk. She gently put me on a gurney and they took me to the hospital. It was snowing outside and when we got to the ER all I wanted was for them to give me something for the pain – but they couldn’t do that until they had made a diagnosis. I knew that – but I could just barely manage to keep it together. The next thing I knew I was in a CAT scan and the technician was yelling at me to lie still. I thought I had been but I was evidently wiggling around from the pain. My spunk came back enough that I yelled back that I was trying and didn’t he think I wanted to get this over with as soon as possible too so I would know what was happening to me and could get something for the pain. Then I remember a doctor leaning over my gurney and telling me “You were right. You do have a bleed in your right frontal lobe and you need surgery right away.”
Even though I had suspected an aneurysm – without knowing why – it was scary to actually have it confirmed, and even worse to know I needed immediate neurosurgery. They gave me a shot of morphine which brought incredibly welcome relief and put me in a kind of zone. My husband’s cousin came to drive him home to get an overnight-bag and work-related papers and resources. We are both self-employed and he would later have to call all my patients to cancel their appointments as well as get a friend of mine to cover for emergencies for me. I still can’t believe he was able to do all that plus deal with his own business, our family and his own anxiety. He was just such a sweetheart through the whole ordeal! They were going to meet me at the hospital in Rochester.
This was the longest ambulance drive I ever want to have! We were in a snow storm and the driver was having difficulty trying to keep the car from sliding around in the snow. I was still on morphine, but awake and able to think a little for the first time. I tried to remember what I knew about aneurysms. One of my husband’s friends had died of one a few years back, and we had been told that most people didn’t survive such an event. Then I remembered how one of my dear patients had been processing her grief throughout the last year from losing her mother to an aneurysm. I remembered the blow-by-blow accounts of the poor woman’s suffering, her surgery and her head swelling so that they had to drill holes to relieve the pressure and I could feel myself getting sick at the thought of what might be waiting for me. I realized that I might not survive even the ambulance drive or the surgery, or the period after the surgery. My patient’s mother had died a week after the surgery. I don’t really remember expressly praying then even though I am a very spiritually oriented person. I just felt myself held up spiritually, feeling okay even though I knew I was facing death. I felt at peace, whether brought on spiritually or by the morphine or a combination of the two.
As I was contemplating my situation, my thoughts drifted to my children that I might never see them again, not even to say good-bye. The adrenaline from that anxiety and pain helped me to think a little clearer. I knew how important it is for children, including adult children like mine to have a last contact with a dying parent and vice versa. So I asked the nurse if she could do me a favor. She agreed to take some notes of good-bye letters I dictated to her for my sons, reaffirming my love for them, how darling they were as little boys, how I wished I could have done better as a mom, celebrating them more and how proud I was of them and the lives they were living. We were both crying. By the time we were done with the letters we had arrived at the hospital. I remember the nurse saying “Now you make sure your children get this, regardless of what happens!”
Soon my husband and cousin arrived as well and after another CAT scan, I was settled into a room to wait to see the doctor (evidently the leak had stopped because they were not rushing, which was reassuring).
When he came in he introduced himself and struck me as a compassionate and no-nonsense kind of guy. He explained where the bleed was, that I would have “flat affect” for at least a year and that he needed to let me know that this was very serious and that I might not make it. He was hopeful, seeing that I was otherwise in good health. I didn’t think much about the flat affect until later – I was focused on surviving. I was very thankful for his frankness since I already knew I was in grave danger. The fact that he did not hide it from me gave me confidence in him as did his clear, kind way. The last thing I remember is my family and the doctors smiling at me.
After that there is a huge blank until I remember being moved into a rehab hospital. I have no memory of the entire two weeks in the hospital, first in the ICU and then in the step-down-unit. In retrospect, I am glad, since what I have heard about it since then is still at times difficult to bear. I had to learn to walk and talk again and had no control over my body functions. I didn’t really wake up from the surgery for ten days, even though they tried to rouse me. I was in something of a semi-comatose state and eventually they did an angiogram to see what was happening, fearful I had had a stroke. After this procedure, I was awake for half an hour or so. Thankfully I had not had a stroke and my children, who had flown in from Atlanta, were able to see me and talk with me before they had to return home. I have no recollection of this, but the following conversation has become something of “folklore” in our family: My son Josh, a lawyer, asked me “Mom, do you know where you are?” I answered “Yes, I’m in the hospital.” “And do you know why you are in the hospital?” he followed up. “Of course I know why I’m in the hospital”, I said, “Stella (his wife) and you are having a baby.” That got a laugh from everybody, but five months later they actually surprised us with the announcement that they were indeed expecting their first baby!
I remember feeling very confused in the rehab hospital. I had trouble finding my room on my way back from therapy (speech, occupational and physical). My balance was still way off and I would routinely walk into door frames. The worst part was that I still had only poor control over my muscles that control urination and, like most of the patients on this neuro-rehab-floor, I would frequently wet myself. It was difficult to live with that. What helped me most were two incidences: one happened on my way to the dining hall, when I suddenly stopped and stood cross-legged in the middle of the hall, using my legs to compensate for the non-existing muscle response of my pelvic floor. A male nurse approached me and said “What are you doing standing like that? You’re going to fall!” I tried to walk cross-legged to the bathroom down the hall, saying “I just got to get to the bathroom. I can walk like this, if I don’t I’ll pee my pants.” “So go ahead, pee your pants!” He said. “You know that happens here all the time. We don’t want you to fall and we have everything you need to get cleaned up right here.” I could have kissed him for normalizing my embarrassment that way and for being clear that my safety was more important than wet pants.
The other incident was with my roommate. She was an elderly woman who was admitted a few days after I got there. The first night she woke me up, asking for help. When I asked what the matter was she said she had wet the bed. I told her to call the nurse. “If I get up, the bell will ring at the nurses’ station (a safety device to keep people from getting up by themselves at night) and the nurse will come anyway. Don’t worry about it. They will be very nice and help you.” But she remained very upset – and I could relate!! – so I decided to call the nurse for her. My poor roommate was crying and said to her “I’m so sorry, I’ll pay you more!” It killed me to hear her say that! The nurse immediately reassured her “This is what we do for everyone, it’s ok!” But my roommate wasn’t so easily convinced. So I got up out of bed, went over to her, whipped open my bathrobe so she could see I had wet my pajamas. “See”, I said, “it happens to all of us. It’s not bad, it’s just part of the fallout from what happened to us.” Somehow comforting her in her shame and anxiety helped me as well and we could support each other.
I also realized in retrospect that I was occasionally psychotic. I don’t know that anyone recognized it because I kept my delusions to myself. Since my fears were that I wasn’t really in a hospital getting taken care of, that I was, in fact, at a post office and something dangerous was going on and I needed to get to the parking lot to find my car and get away. My husband remembers me saying over and over again we needed to get to the parking lot and how he would reassure me I was safe and that the car wasn’t in a parking lot, that it was in the hospital garage.
I was never so glad to be home a month after the whole ordeal had started. I still had to go to out-patient therapy three times a week and, of course, I couldn’t drive. I was itching to get back to work – completely unaware of how I had changed. I kept insisting that I was fine and I was recuperating at an amazing level, but I was NOT fine! I just didn’t have the awareness to know it, or to recognize that I had lost my well-developed sense of self-awareness. Eventually I persuaded everyone and by June I went back to work, just one day a week to start out.
It went pretty well, except that I had developed an infection at the surgery site and had to go back into the hospital two weeks later for a small craniotomy to “clean it up” as my neurosurgeon called it. I just stayed overnight, bemoaned having part of my hair shaved again (when it had just grown back a little bit!) and went back to work the following week. Unfortunately, even though I was on antibiotics the wound would not heal properly and kept leaking. So, by August I had to go back into the hospital again, this time to have the bone flap removed. My doctor explained to me that this can happen: that the skull bone, once the flap had been cut-out for the initial surgery, didn’t “recognize” the flap as part of itself when it was reattached and was rejecting it like a foreign object. Therefore it had to be removed, I had to have a pic line put in for two weeks of intravenous antibiotic treatment, and then come back three months later to have titanium mesh covered with plastic put where the bone flap had been. So, I had two more craniotomies, hair-shavings (although my doctor tried hard to keep that to a minimum!) and sickness from the anesthesia. The last surgery I got so sick that as soon as I woke up I started vomiting and didn’t stop all night. Thank God it was the last surgery, because my poor body had about had the course with 4 craniotomies in 8 months.
I had tremendous support during this whole trial. Friends who lovingly helped clean the dried blood out of my hair after the surgeries, who brought me tapes of Bach and Beethoven to the hospital, sent flowers and knit shawls and blankets and came just to sit with me or accompany me to one of my therapy sessions. Love, prayers, and cards just kept coming. My best day at the rehab hospital was when my husband brought Sidney, our four year old yellow lab. He had gotten permission from the nurses and brought her into a little sitting room on the floor. It was the most therapeutic treatment of my whole stay to get to be greeted by her jumping up on my lap like a little lap dog, all wiggles and joy. It was a warm, bodily remembrance of my life back home. Of course, eventually all the patients got to see her and pet her and Sidney had made her debut as a therapy dog.
The most difficult part of my adjustment “back into normal life” was the gradual awareness how life wasn’t “normal” anymore. I didn’t feel like myself, hated the chronic fatigue and my emotional unresponsiveness. I remembered how the doctor had predicted I’d have “flat affect” for at least a year. I always valued my emotions, after all, I’m a therapist, and it was very sad not to be able to cry, write poetry or enjoy the life that had been given back to me. It seemed I didn’t care about anything and the neuro-psychologist back home called it “a-motivation-syndrome”, something evidently quite common with this type of brain injury. He explained the bleed had damaged my motivation center as well as some of the dopamine-suppliers to the right frontal lobe, interfering with my short-term memory and my ability to focus and concentrate for any length of time.
I couldn’t read any of my technical literature for more than a few minutes and I started to put on weight. I had been a size four for many years, had been active, doing yoga most days, jogging 4 or 5 days a week, and playing tennis and skiing occasionally. I couldn’t do any of that now, I didn’t care nor was my body in shape for it. I had always loved food, but the exercise had taken care of maintaining my weight, I only watched a little. Now I didn’t watch much, and slowly the pounds were creeping up until I hit a size 12. I was horrified. I had put on 37 pounds since leaving the hospital.
The depression hit about one and a half years after I had the subarachnoid hemorrhage. I had started taken Amantadine, a Parkinsonism drug to help deliver more dopamine to enhance my thinking and remembering and elevate my energy and mood. It did all of that and I was thrilled. But after a while I developed migraines and when they worsened I eventually had to go off the drug. We then tried Wellbutrin combined with Adderral, but I had a cardiac reaction to the Adderral and had to go off that as well. It’s now been three years since the aneurysm ruptured and my life was spared. For the first year I was just thankful and sort of living from day to day trying to regain my strength. After that I also got angry and depressed. I would say “I’ve been thankful for over a year, so can I now be angry about how I’m not myself anymore?”
My greatest joy was when in June of the following year I became a grandmother for the first time. The kids had asked me to come and stay with them when the baby came and we knew the exact date since it had to be a C-section. I will never forget coming into the recovery room just minutes after they had gotten in there, and my son beaming at me and saying “It’s a girl!” I immediately started to cry because there hadn’t been any girls in our family and I had certainly hoped for one. But I would have been just as thrilled and unglued with a boy because of the intensity of seeing a brand new life, held with such love and joy and gratitude. I kissed my son, and her little cheek, and then walked over to my daughter-in-law who was still having to lie flat because of the epidural. She was softly crying and when I asked what the matter was she smiled and kept saying “I’m just so happy, I’m just so happy.” I kissed her too and then asked “Well, I know you have been secretive about names, but are you going to tell me now what her name is?” Josh walked over to me, and still with that broad smile on his face said “Yep, her name is Gabriella!” and laid her into my arms. Well at that moment there was no more flat affect! I sobbed with joy, taken completely off guard that they had named her after me. The first thing I had said when waking up after the aneurysm surgery was that the kids were having a baby. And now they did and they had given her my name, and I felt as though it was an enormous gift and celebration, not only of that sweet new life in my arms, but also of my own, that I had survived and gotten to experience becoming a grandmother!
Since then two more grandchildren have arrived in our family. Gabriella, now 21 months old, has a little brother 2 months old, and my other son David and his wife Gatea, a wonderful young Thai woman, have a little boy 13 months old, Suriya-Alexander (Suriya means “Sun”!). I have been tremendously blessed to be allowed to have a part in these dear young lives that are so full of innocence and joy.
In spite of this amazing blessing I am only now beginning to climb out from under the depression which had worsened when we moved to Atlanta, Georgia a year ago. I missed my practice, my friends, my church community, and all these lovely folks I felt close to and who had known me “before”. When I got to Atlanta and the initial joy of being near my grand-kids had worn off, I realized how I would always explain to people that I had had an SAH and what I had been like “before.” I began to recognize that I was ashamed of how I had changed and wanted people to know how I was “before”, as though that was the only way I could be ok and accepted.
It was this shame that was driving my depression, exacerbated by the fact that I couldn’t transfer my license to Georgia from New York and after 21 years of practicing my profession had to start from scratch again, starting with taking a licensing examination, which I am now studying for. Having been out of grad school for over 20 years, I do not remember the details of the who, what, where, and how of all the theories I had to study then since I developed my own integrated model of doing therapy over the years, like most folks in my profession do. This means I have to study and retain a huge body of knowledge now, very difficult with the limitations I have with my brain which is healing only very slowly.
Somehow I feel however that I have turned a corner. I have started to exercise again to get blood pumping to the old brain, and I actually enjoy, at least at times, reviewing what I learned so long ago. I have filed an ADA (application for disability accommodation) with the licensing board to get them to grant me a little more time in the exam, given that my processing speed has taken a hit from the aneurysm. But regardless, I will take the exam. If I fail it, I will study more and take it again. And if I fail it again, I will look around for other ways to use the skills I have developed through my work.
I have also found a spiritual frame for this that is helping me. The truth from the scriptures that of late has been my guiding light, so to speak, is that “God’s strength is made perfect in weakness”. How often I used this frame with clients in the past! Just as I was trying to help them, so it has helped me to get rid of the shame I have felt from the deficits I have incurred through my brain injury and to accept how life is now, specifically how my brain is now, to begin to check myself when I am obsessing about how I used to be able to think quickly and clearly and have the knowledge I needed immediately available to me, like an open data file in a computer. I have to use supports now, take a lot more notes, go much more slowly, and depend on the kindness of my friends and family when I “forget something they just told me” or repeat myself.
It could be so much worse, after all. In total only 50% of people who have an aneurysm survive such an event, and when they do, they usually have much more dramatic fall-out. I could be in a wheelchair, like the young woman in the rehab hospital: she cried all day, every day! Or I could be unable to speak or think coherently at all.
I heard a wonderful sermon that really spoke to me this last Sunday (the second Sunday of Lent, the one that has my favorite “collect” from the Episcopal “Book of Common Prayer” in the liturgy, one that I have responded to deeply in my aneurysm recovery because I have felt my need for mercy: “Oh God, whose glory it is always to have mercy.” Isn’t that wonderful?). The focus of the message was that we so often completely misunderstand the meaning of Lent, focusing only on the aspects of sacrifice and self-denial, without going further to the purpose of these acts, to make room for the promise of God, the coming of Easter, where everything is made new. There was a reference to a reading from the Old Testament where Abraham is told to pack up and leave, leave everything, his roots, his home, his community, the very fabric of his life. To leave it for a promise, a promise not yet seen or really knowable, one that required the courage and faith of trusting to move into the unknown. The phrase in the sermon that struck me the most was the description he used for this process: “Banished to the promise”. It has been sort of washing around in me, this wonderful phrase. For three years, off and on, I had felt “banished from” my life as I knew it. And now I have this new frame, “banished to the promise”. There is still work God has for me to do besides being a grandma (which is plenty of “promise” already!!). After all, I was allowed to survive and have my life back as a gift and promise.