All That's Left
“Some” of What’s Left…
I was sleeping in the guest room on Valentine’s Day, 1999, to avoid listening to my husband’s incessant snoring. I was a 35 year old mother of a 22 month old son, Sam, and in my sixth month of my second pregnancy. I woke up alone. While I don’t really remember things well, apparently I was complaining of a severe headache and couldn’t move the left side of my body. My husband remembers waking up thinking his biggest problem that day was going to be where to get me flowers. He quickly figured out there was a serious medical emergency and called 911. The rescue squad arrived in minutes.
Since I was rather large at six months gestation, the rescue squad asked my husband, Dirk, if he would mind if they carried me down the stairs in a body bag because a stretcher would be difficult to safely maneuver. He agreed. They didn’t zipper the bag up and over my face so I was able to breathe. I had a seizure and fell unconscious before getting to the ambulance.
Dirk called the next door neighbors and told them that I was going to the hospital and they needed to come over and take Sam home with them. Tom came over immediately and got Sam. Tom’s wife, Angela, later told me that this was the worst day of her life. We had been good friends over the years, and were having children very close in age, and now she was charged with my son for an indefinite period of time. We didn’t know what exactly happened to me or what was going to happen, only that it didn’t look good.
Dirk followed the ambulance to the hospital, all the way thinking our life was never going to be the same. When I arrived in the ER, an exam by the doctors showed that my pupils were fixed and dilated which meant that my brain stem functions (e.g. respiration) were starting to shut down. Next, a CAT scan showed what appeared to be an extremely large cerebral hemorrhage that was causing my brain to swell so much that it was being pushed to one side of my skull. The only way to save my life along with the baby’s was to perform a craniotomy right away. Dirk notified my father and my sister to get to the hospital as soon as possible. My mother was on vacation in Florida and my sister called and told her as little as she could other than I was in the hospital and she needed to get home NOW. With such short notice, her flight options were limited. She had to fly to JFK airport which is about the least convenient of the 3 metropolitan airports in our area. My oldest brother picked her up and took her straight to the hospital. My father was in shock and called my brother in California and left about 4 nearly hysterical messages on the answering machine on his home phone. My brother was at a dog show and when he got home he called my father who told him no one knew what was going to happen to me, but that I had had a brain hemorrhage. This was before cell phones were ubiquitous.
The best neurosurgeon in the hospital was on call that early Sunday morning and he skillfully drilled a hole in my skull then used a saw to cut a small circle out of my skull so he could gain access to the area of my brain that was bleeding because of an arteriovenous malformation that had ruptured. An AVM is a congenital defect which could have ruptured at any point in my life, or not. An obstetrician from the group of OB/GYN’s I had been seeing attended the surgery in case the baby needed to be delivered via C-section in the event I did not survive. At only 26 weeks, this would have been extremely risky for the baby in terms of viability and the ability to breathe on his own. We both survived the surgery and now had to deal with the issue of brain swelling. I was put into the Neuro Intensive Care Unit and placed in a medically induced coma in order to keep me as still as possible. I was in this state for about a week while my brother from California was planning to fly to New Jersey. He was working at a job which allowed him a great deal of flexibility as far as his schedule. When his supervisor heard what had happened, she told him to just go. When he arrived, I was no longer in the coma, but just generally “out of it”, barely able to open my eyes or speak. No one could tell if I was “still there” yet. The left side of my body was completely paralyzed, and I had tubes draining fluid out of my skull. My mother arrived from Florida not knowing what to expect. She remembers being barely able to walk down the hall in the hospital to see me, with my oldest brother supporting her. She walked in to a horribly frightening scene with my head bandaged, my beautiful naturally curly hair shaved off half of my head, and tubes coming out of my skull. I could speak, but I certainly wasn’t myself. Dirk and my father spent a lot of time sitting on the floors of the hallways sobbing, unsure about whether I would survive, and if so, what kind of condition I would be in.
My family learned from the nurses in the NICU that they notice a difference in the outcomes of patients depending upon which neurosurgeon was on call for each patient’s emergency brain surgery. They said I was lucky to have had Dr. Beyerl as my surgeon and attributed both my survival and my good recovery to his exceptional skill and experience. There was frequent monitoring of the baby through ultrasound. Interestingly, when my thought process and personality started to return to some level of normal, I NEVER gave any thought to having a second baby and how I would take care of it considering I couldn’t walk at all or use my left arm. I knew how physically demanding that job was through my experience of having Sam, but I didn’t worry about it. I think this was a psychological protective mechanism at work, working in tandem with some organic damage to the executive functioning part of my brain. I had to take seizure medication because I had had the one seizure and the drug’s main side effect was constant fatigue.
My room was across the hall from the nurse’s station where they played a radio all day. One day I started singing along and my mother says that was the moment she knew that I was coming back in terms of the Victoria she knew. I have always known the lyrics to an uncanny number of songs so Mom was thrilled to see that I still knew them. All the while, I had what is known as a “flat affect”, meaning my face and voice showed little or no expression or emotion. This lasted for several months.
With any recovery from a brain injury, it is vitally important to begin physical therapy as soon as possible. This was dicey for me because I was pregnant. The physical therapists came and started their usual routine by getting me up and walking using parallel bars and lots of support and trepidation on their part. But we pushed through the fear and got me going slowly but surely. Rehabilitation hospitals were not willing or equipped to admit me for rehab because of the pregnancy. The obstetricians wanted the baby to develop in utero for as long as possible so as to give his lungs as much chance to develop in order for him to be able to breathe on his own. It was assumed I would deliver via C-section because of the paralysis. Sometimes labor started so I was given medicine to stop it from progressing. I didn’t have any morning sickness during my first or second trimesters, but suddenly I was vomiting every day. Not being able to move at all made this especially repellent. Nurses suggested that I eat potato chips and fresh lemonade which my father brought to me every day. I’m not sure this helped since I threw up every day at least once, but I think it made my father feel better being able to try to help even though he was feeling totally helpless and distraught because his “baby” was in dire straits.
After about 2 weeks, I was moved from the NICU to a standard room because my condition was stabilized. I started to go into labor a few more times, but the medication kept it from progressing until at 34 weeks it did not work and the labor progressed. My parents and my sister were visiting when this happened and they needed to reach Dirk because it was evident that I would be giving birth that day, April 3rd. Here again, no cell phone so messages were left on the home answering machine. He had been out hiking with Sam and a friend so after he got the message he came to the hospital for labor and delivery. I opted to have an epidural as I did for the birth of Sam, but for some unknown reason it didn’t eliminate the labor pains the way it did when I delivered Sam. The labor only lasted about 6 hours. The birth was attended by both of my parents, my sister and my husband which was kind of an interesting twist. With some help from nurses pushing on the left side of my belly, somehow I pushed that baby out while I was completely hemiplegic. Adam was 6 weeks premature and weighed 5 lbs. 6 oz. The neonatology team was on hand for the possibility of issues related to prematurity, but there were none. The attending obstetrician was Dr. Hirsch who had spent countless hours at night in the hospital with me holding my hand and talking to me in his free time. Years later I saw him in his office and had the chance to tell him how much I remembered his kindness and how much it was appreciated.
I wanted to breast feed Adam because I had done so for Sam for 15 months and didn’t think it was fair to the new baby to miss out on the benefits of mother’s milk just because I was hemiplegic. The nurses helped me to figure out how to do this using only my right arm and some pillows to hold the baby. Insurance paid for a top-of-the-line breast pump so he could drink my milk from a bottle which anyone could give him.
Sam was home with his Dad but was very confused about what happened to his mother. At only 22 months, he wasn’t yet verbal which would have made it so much easier for him to understand. He was brought to the hospital to see me so he could see for himself that I was around. There were those who dissented on this decision, such as my in laws and my niece’s father who believed this could do more harm than good. Sam was indeed traumatized by seeing his mother with a bandaged, tube-drained head with half her hair missing but we will never really know if this did more harm than benefit. It was just one of those impossible decisions made under severe stress.
After 53 days of lying in bed pregnant and hemiplegic and then giving birth on April 3rd, it was time to move me to a rehabilitation hospital. We decided the best place for Adam would be with my parents since my husband was caring for Sam and our dog on his own in addition to running his business and visiting me every day. We hired a baby nurse to stay at my parent’s house to spare them the late night feedings. I continued to pump my milk while I was in rehab, and my parents brought Adam every day for some nursing. Somehow I kept up with nursing him some for four months. Some breast milk is better than none.
Physical therapy was brutally difficult since I was severely impaired physically and recovering from childbirth. Still, we spent hours every day teaching me how to walk and take care of myself. I also had daily “speech” therapy sessions which had nothing to do with speech and everything to do with recovering executive function and thinking skills. Bruce was able to fly back and forth from California frequently during the six weeks I spent in rehab and came to many therapy sessions with me. I celebrated my 36th birthday on April 25th with a visit home. My old friend Nancy flew in from Florida for this occasion which made it all the more special. It wasn’t easy going back into the hospital, but my mind was now functioning well enough to understand that it was necessary. I was also struggling with depression from the obvious life stress, in addition to postpartum depression. Brain damage from a stroke also organically contributes to depression. I started to take antidepressants while I was in the rehab hospital which helped boost my motivation to struggle through the exhausting therapy sessions to regain some independence. I started to walk with a quad cane, one which has four “feet” and makes it easier to balance.
The physical therapists pushed me hard at the same time recognizing the severity of my physical impairments. I was one of the youngest patients in the hospital since so many were recovering from knee and hip replacements, amputations, and strokes more commonly associated with old age. My physiatrist frequently asked when I was going to switch to a straight cane. Learning how to walk again was intensely difficult. It became a bad habit that I couldn’t begin to walk unless I was looking down at my feet. Constant reminders from the therapists cured this and I learned how important it is to be looking where you’re headed. My left arm was extremely dystonic which meant the muscles were constantly firing and never relaxed. The arm seemed to have a mind of its own. This symptom lingers to a degree to this day. The dystonia was very painful. These challenges were added to the learning to walk equation.
I had occupational therapy sessions daily to help me learn to take care of myself for things like getting dressed and trying to regain some use of my spastic left arm and hand. My parents brought Adam to the hospital every day to be nursed at least once. Everyone at the hospital was thrilled to see a newborn baby in such a dismal setting, but the baby nurse fiercely protected him from the potential onslaught of germs, barely allowing anyone to even look at him.
I was so afraid when we switched from the quad cane to the straight cane because my balance was terrible. Fortunately, I’m a stubborn one and was determined to win this battle. In a few weeks, my physiatrist wanted to know when I was going to get rid of the therapist and walk on my own with just the cane. This process developed slowly because determined as I was, I was also scared, depressed and exhausted from the medication I was taking.
Throughout the six weeks I spent in rehab missing my family and my home, I dreamed of returning home with an illusion that everything would be fine once I got there. I was walking with fair stability around the hospital with its single level, smooth tiled floors, but would be returning to a two story house that was difficult to simply enter because the one hand rail on the front steps was of no use to me going up the stairs since it was on my useless left side. I was expected to use a wheelchair at first for safety reasons but my house was definitely not wheelchair accessible or friendly.
I was discharged from the hospital on May 8, 1999, almost a full three months after Valentine’s Day. My dream of returning to any kind of “normal” life quickly turned into a nightmare of trying to survive. It seemed as if the entire universe had been rearranged during the 3 months I was away. I was not cleared to drive upon my discharge due to lingering cognitive deficits, and less than ideal reaction time. We were able to hire nannies to care for my two babies while my husband returned to work and I sat helpless in my wheelchair watching a stranger take care of my two year old and 1 month old sons. I definitely had my own ideas about how it all should be done, but the nanny did things her way unless it was important enough and I had the strength to interfere. I was still taking antidepressants and seizure medication which made me want to sleep much of the time.Trying to start rebuilding any sort of normal life seemed impossible. Most of our friends were so traumatized by these events that they had to just look and turn away, making my journey all the more lonely and depressing. I think having the two babies was what motivated me to put my all into going for outpatient therapy to continue to improve. I planned on being their mother no matter what. My marriage was clearly very damaged because of the massive changes in me, but that was the least of my worries at that point. It was difficult for me to think about the trauma my husband had suffered from the vantage point of a wheelchair. Although we had nannies to care for the babies while he was at work, his time off was totally consumed by caring for them in addition to having another, adult size “baby” to take care of. I was stuck at home with practically zero ability to return to any normal activities except for watching television. I could read, but had trouble staying focused as my mind was consumed by thoughts of my ruined life. I continued to recover physically and mentally, but was very depressed. Simple tasks required gargantuan energy which was already in short supply. My adorable little boys became my motivation to keep trying harder to regain my strength and my life.
After about a year, when I was able to drive again, I was at a pivotal point. I knew that my injuries were permanent and I would have to adapt to them every day for the rest of my life. I saw a choice between sitting in my wheelchair and crying and staying depressed for a long time or forever, but one day it simply dawned on me that this was a very bad idea. I was only 36 years old, I had a great husband who loved me, and two beautiful sons who needed their mother. Sure I had some serious physical deficits, but my mind was still sharp. I saw a psychiatrist who helped manage my medication and did talk therapy. At one session I fell into whining about all of the sports and activities I used to participate in but could no longer do. I was a dancer, hiker, skier, ice skater- the list went on and on. At our next session he suggested I look into adaptive horseback riding which was something he had seen and believed would benefit me physically and psychologically. I took to this right away and started weekly lessons. The doctor was spot on with this recommendation. I could “hike” and “run” and “walk” on a horse!
I decided to keep my focus on the good that remained in my life as opposed to what was lost. I stopped taking the antidepressants because I didn’t want to take them for the rest of my life. I wanted my life back, or at least a new kind of life, and my focus was on being ALIVE. 70% of patients who have cerebral hemorrhages do not survive, and many who do require nursing home care for life.
I made a dramatic recovery in a year. I was back to doing most of what other “normal” moms and wives do. I became an enthusiastic equestrian, and by 2014 was winning ribbons in the horse show. I wanted to travel still even though it was less convenient with a disability, and we went to Kenya in 2012 and did a safari among other family trips.
My husband seemed to suffer more over the losses we incurred and became deeply depressed. He had been abusing narcotics since his twenties and now started to take the OxyContin that was prescribed for my chronic pain and became addicted. He went from being an enthusiastic supporter of my recovery to a sullen, withdrawn husband who did his own thing whenever he could including traveling frequently on his own. He had the excuse of my disability being too much trouble so he had to go by himself. He did his own thing for years which deepened the already large chasm between us.
We did some work on putting “us” back together, but often it seemed that my physical limitations were just too, well, limiting. We were married for eleven years before we had Sam, and traveled and were very active together. This was what seemed to “glue” us together. I slowly became independent as far as walking, driving and taking care of myself. It was at this juncture that we decided to build a vacation home on a lake just an hour away as I continued to recover at home, but Dirk used this project to escape what was going on at home, isolating me further. We enjoyed many years there when the kids were small, and I was able to become involved in finishing, furnishing and decorating the house.
Nonetheless, we continued to drift further apart. It seemed that no amount of recovery was good enough for him. I chose to appreciate my second chance at life and celebrate what I recovered.
We tried counseling to try to put “us” back together. It seemed this process went in circles every time we tried. I think it is harder for someone who is addicted to narcotics to see and feel things clearly. He stopped taking drugs at one point because he wanted to climb to the top of Macchu Picchu, but relapsed a few years later.
My life continued to improve while he became more deeply depressed. I was riding regularly, attending social events through the facility where I rode, making new friends, learning to kayak, swimming, and enjoying my kids. I was even cub scout leader for Adam’s cub scout den. I did all of this while living in chronic pain for which there weren’t any good treatments other than painful injections of Botox every three months to weaken my spastic muscles.
In the spring of 2015, I felt I had climbed out of a very deep, dark pit of shit and was living a full life that I wouldn’t have imagined in 1999. It was at this point that my husband decided he wanted to “explore his physicality” with other women. He thought that maybe having an open marriage would help him not feel so depressed and limited. I disagreed, but was told that if I didn’t agree, he was going to do it anyway. We tried this for about six months, at which point I decided I would not be my husband’s second priority since he had taken up romantically with a woman from Colorado where he had been going on frequent “business” trips.
My husband decided to separate mid summer, 2015. The big questions for me at that point were:
Now what? I’m disabled and alone. Will anyone ever love or want me again?
I started dating online, and had an interesting, surprising experience. I expected my disability to be an automatic deal breaker, but instead found that men still found me to be an attractive, interesting fun person to be around. Some men I went out with criticized me for calling myself “disabled” because meeting me for the first time in my greatly recovered state almost completely hid the past years of being much more handicapped.
I live my life now with a great sense of wonder for simply being alive, and take almost nothing for granted. It is a full, happy life where I ride horses, date, choose which and how many lovers I would like, and can still laugh at the absurdity of life. Even though I am still limping, carrying a cane to walk, and have limited use of my painful left arm, my mind is sharp which is the most important thing. Daily, I am filled with gratitude for all that’s left.