Beth’s Story
My co-worker Meg’s voice sounded high and shrill and far away. “Beth, Beth are you all right?” she said. The pain in my head was unbearable. As I stood there, I lost any sense of time or space. I concentrated on trying to make the pain stop.
“Beth, I just want you to sit down,” Meg said. “Just try to take deep breaths in and out.” She relied on her nurse’s training, her automatic inclination after ten years in the profession. I wavered and began falling to the floor behind my desk, and Meg helped me fall as softly as possible. My manager came out of her office and called another co-worker to help. Another nurse in our office came to my side in a heartbeat, but was unable to do anything, I was latertold, because I had lost consciousness. An ambulance had to be called.
There were two registered nurses on the ambulance, and they began breathing for me until I got to the hospital. I was immediately taken for a CT scan where doctors could see a large mass on my brain. I was rushed to the operating room, and a blood clot the size of a grapefruit was removed; the result was a severe hemorrhagic stroke. I survived. But no one knew why I had bled.
I was admitted to a community-based hospital in Trenton, New Jersey, where I stayed for ten days, most of them in a coma. The nursing care I received there was excellent.
Here’s the way a coma works in the hospital: when you open your eyes, you are no longer in a coma. Opening mine at the end of those ten days was a good sign for my recovery. The only problem was, what kind of recovery was I to have? My neurosurgeon had no prognosis to tell my mother because he did not know the cause of the hemorrhage.
What might have been an ending turned intothe beginning of a dangerous road of treatments and procedures. At this hospital I had a tracheostomy to keep my airway unobstructed, and the placement of g-tube. A g-tube, or feeding tube, is a device that is placed in the stomach and extends outside the body so that liquid nutrition can be administered. The g-tube was placed on the left side of my stomach, close to my belly button. Though I remained in a coma during these procedures, my healing process had already begun.
After regaining consciousness, I was transferred to New Brunswick, to a teaching hospital, and it was here that doctors discovered that I had an arterio venous malformation, or AVM. An AVM is a condition where a vein and an artery are positioned so close together that pressure builds in the artery with no way of being released. Eventually, the walls of the vessel weaken, causing a stroke. An AVM develops in utero and can be found anywhere in the body (not just the brain). An angiogram—a procedure that uses a contrast medium to examine veins and arteries—revealed that my middle cerebral artery (the largest artery in the brain) was affected. A strawberry-sized cluster of veins and arteries without capillaries appeared on my left hemisphere, which experienced unusually high pressure that culminated in my stroke. AVM ruptures typically occur between age twenty and forty, so I was on right on schedule: I had just had my thirty-seventh birthday less than three months prior when this happened on July 29, 2003.
The doctors now knew whyI’d bled, and I underwent another surgery to resect the AVM. After the surgery, I was in a state that left me only minimally engaged with my environment. I remember nothing from this time.
Shortly after the second surgery, nurses discovered that I was “tracking,” or following a moving object with my eyes. This was a very position sign, though doctors were still unable to give a prognosis.
My mother, whose devotion to me had crystallized in the days and weeks after my diagnosis, and whose strength I would learn to lean on, was visibly relieved. It was still early in my recovery, but we’d been given a reason for hope.
After three weeks I was sent on to a brain traumatic unit (BTU), at a rehabilitation hospital in Edison. I stayed there only seven weeks (in recovery time, this is considered a short stint), and in those seven weeks, I improved dramatically.
The recovery scale used to evaluate my condition was developed at this hospital, and measures six different areas of brain function after trauma: auditory function, visual function, motor function, oromotor/verbal function, communication, and arousal. I was at the bottom of the scale when initially evaluated, but was able to perform all functions except for the oromotor/verbal function task when I was discharged to the Extended Recovery Unit (ERU) of this hospital. I still could not speak. I hadn’t spoken a word since the day of the stroke.
It wasnow September. My mom, who was now my most valued advocate, met with the chief physiatrist and the other therapists who were working with me. Here, my optimistic doctors felt I would walk and understand language again someday. But they were hesitant to say whether or not I would ever talk again.
“A year from now, we will be looking at a very different Beth,” they told my mother, but did not elaborate. She had learned not to ask for specifics. The psychologist felt it was too early to know whether or not I would speak again, and so my mother focused on the progress I did make—eye blinks and head nods, the encouraging basics of communication.
At this hospital, the pursuit of answers continued; a relentless parade of doctors, nurses, and therapists all raised more questions and offered more possible solutions. At the ERU (the extended recovery unit that I went to after BTU) I learned that my bleed was frontal temporal in the left hemisphere of my brain. This affected my cognition, speech, and fine motor abilities.
It was in the ERU that I began to make quantifiable improvements. So much of this has to do with the amazing physiatrist Dr. Bayer, the main physiatrist at ERU who cared for everyfacet of my care from all the medications to surgeries to my emotional needs while I was at ERU. Dr. Bayer had gone to medical school at Yale – she has an amazing amount of knowledge of her specialty of physiatry. I will never forget Dr. Bayer for all the great care that she gave me.
I worked with physical therapists, occupational therapists, speech therapists, and recreational therapists. Through working with these professionals, I learned that, although spontaneous improvements can occur in the first six months after injury, with work, improvements could continue throughout a lifetime.
How bad was I in the beginning? Physical therapists ranged my limbs, gently stretching my muscles. I could not keep my head in a neutral position. For this reason, and to keep my blood pressure stable, much of my initial therapy took place in bed.
In addition to my regular physical therapy, I also worked with occupational therapists. Occupational therapy focuses on daily living skills, such as brushing your teeth, combing your hair, and opening food packages.
Because my injury occurred on the left side of my brain, all of my deficits were on the right side of my body, including my right arm and hand. After a brain injury, a patient can develop muscle spasticity that makes it difficult to perform daily living skills. Some therapists believe casting the affected limbs helps reduce spasticity and promotes better function. These casts usually stay on for seven days at most. In rehab, I had serial casts at BTU without any problems, but the results from casting would never last long.
But the ERU occupational therapist—I’ll call her OT Marieb—decided to cast my left hand and arm (which was fine and did not need to be in a cast), and did so incorrectly. With her student assistant, she overstretched the fingers on my left hand when placing them into the cast, leaving them nowhere to go but to be pulled back. Additionally, my pointer and middle fingers were bent forward, turning them into little hooks.
Because I was still without speech abilities, I could not tell the therapists what I was experiencing physically; I was entirely at their mercy. My pain medication made the casting bearable, but when the cast was removed, I could not move my fingers at all.
To remedy the damage, OT Marieb used Fleudo, a device that looks like a big box with portals on two separate sides. Inside this box, warm corn meal constantly blows around. The patient inserts her hand into one of these ports and keeps it in there for at least fifteen to thirty minutes.
The warm, blowing corn meal is supposed to relax the hand and fingers. But my hand was so ruined that the Fleudo results were marginal at best. To my dismay and despair, I would have to have yet another surgery to fix it.
The operations kept piling up, each one asking more of my body and my spirit to endure. In December, five months after my stroke, I needed my tracheostomy lasered to reduce the build-up of scar tissue that was making it hard for me to breathe. Because of the scar tissue build-up, I had to stay on oxygen all the time. I went to the main hospital that December (2003).
My mom and my Uncle Marcy came with me. I still couldn’t speak, but when my uncle told a joke, I started laughing and raised my left arm. It was the first time since July that I had moved it. In retrospect, I can chart my progress in such small movements and moments such as these.
I didn’t speak a word for five months. But on the morning of December 23, 2003, a certified nursing assistant came into my room to help me get dressed and brush my teeth. And then it happened. I said something courteous and innocuous, like “hi” or “good morning,” and that was that; I started talking as though I’d never stopped.
The CNA left the room immediately to go tell the nurses on duty. They flooded my room. It was a miraculous moment. I spoke lucidly and fluidly. My cognitive abilities were intact, and I knew what was going on around me. My speech therapist encouraged me to call my mother, but I was afraid that my speech might leave as quickly as it came. But I was still talking at 5:00 PM, when my favorite nurse came on duty. She smiled hugely, but said nothing until my mom and my brother Tim came by to see me. I started talking with them, and, according to them, I have not stopped since.
Going through my medical chart in order to write about my stroke and years of recovery, I was struck by the familiarity of the language. After graduating from Providence College in 1988 with an English degree, I returned to school eleven years later to study nursing at Johns Hopkins University in Baltimore, Maryland, completing the rigorous program in 2001. With my Bachelor’s in Nursing (BSN), I returned to my hometown of Bridgewater, New Jersey, to work at a hospital in Somerville. And then I got a fulltime job at the Johnson & Johnson Company, where I worked in the pharmaceutical research division, while still working part time at the hospital.
I lived on my own in Somerville, working a frenzied schedule of twelve workdays in a row before a weekend off. But I was using my education from Johns Hopkins, and I was proud of my ambition to one day become a nurse practitioner who worked primarily with women and children. I had just started my graduate program at the University of Pennsylvania in Philadelphia before my stroke occurred in the summer of 2003.
Post-stroke depression descended as I realized that I could not return to my former life after I recovered my ability to speak. The hurdles ahead were many, a stretch of them so long into the distance that was now my immediate future. I’d wanted to help others, to treat them in situations like the one in which I now found myself. It seemed a cruel irony that I could recognize the protocols and procedures all around me, but could not participate in the professional world I knew.
Because my bleed was on the left hemisphere, where speech, language, and cognitive sides are found, I developed a psychological condition called Pseudo Bulbar Affect. In The Expression of the Emotions of Man and Animals, Charles Darwin penned the first descriptions of PBA. The pathogenic mechanisms of PBA are still under investigation today, over 130 years later.
PBA, common in stroke and traumatic brain injury patients, is a disorder with symptoms that can be called emotional liability, labile affect, emotional incontinence, pathological laughter and crying.
For instance, if we sit together and watch a television show you find mildly funny, I might find it hysterical. The same effect might happen if you tell me a mildly sad story, and I respond with uncontrollable sobbing. Expressions like these can affect a PBA patient’s ability to remain in her community, as inappropriate laughing or crying can alienate her from the people around her. At home, I try hard to keep my emotions in check, especially while watching television. Children and animals are both major triggers.
In the hospital, doctors tried to stabilize my moods with the drug Lexipro. Then, one of my neuropsychologists thought I would benefit from Prozac. I gained fifty pounds with little improvement elsewhere. The road to emotional well-being would be just as long and varied as the road to physical well-being. It was like fighting a war on two fronts, wrestling with both a devastated body and mind, trying to become a person I both recognized and had never known I could be.
In June 2004 (nearly a year after my initial hemorrhage), I had a fistula excised from my trachea. Then, in October, I met Dr. Netter, a neuro-orthopedic surgeon at the University of Pennsylvania.
One of my occupational therapists advised my mother and I to see Dr. Netter because of her ability to work with stroke survivors, addressing the kind of orthopedic issues I experienced after my stroke. One of these issues was having extra bone in my left elbow, which prevented me from straightening my arm. I had also developed a clubfoot, so I had to wear a brace on my right foot to force the sole to stay flat. When the brain is injured, control of the arms and legs is often affected. Sometimes the muscles have difficulty relaxing, a condition called Increased Tone. The constant contraction of the muscles can cause shortening in both muscles and tendons, which results in deformities like a clubfoot.
The surgery Dr. Netter performed on my foot was called a SPLATT (splinter anterior tibialis tendon transfer). Dr. Netter also performed corrective surgeries on my left and right arms, as well as my right knee. These surgeries focused on lengthening tendons.
In total, I had four surgeries with Dr. Netter, whose relaxed, informative, and deeply caring presence my mother and I welcomed. Dr. Netter once received an award from The Ladies Home Journal where she got a chance to talk about her orthopedic skills, and she included the surgeries she had done with me.
But successes in the operating room didn’t preclude more operations, or more injuries. It seemed that once I entered the hospital system, I just kept getting hurt.
One day, a physical therapy aid failed to belt me into my wheelchair. As I rolled towards the bathroom, I got tangled with a table, and when I tried to detangle myself, the chair fell forward and I fell out.
I landed on my right hip and experienced a level of pain that left me screaming. After sixteen months in bed, I had developed osteopenia, which made my bones brittle enough to break with one hard fall. The x-ray revealed a broken hip. I was ordered back to the main hospital to have it pinned back together.
After I returned home I began Vital-Stim therapy, a kind of outpatient therapy done with a speech therapist, who put electrodes on my throat that shocked the muscles. As these shocks intensified, I had to drink copious amounts of water and complete my swallowing exercises. With my speech therapists, I did this for the whole summer of 2006. For ten minutes each day, I still complete swallowing exercises.
I continued with outpatient therapy at this hospital until 2008. My therapist, Ann, was wonderful. She helped me regain much more function. After I left her program, I began physical therapy (called Bobath) at a local hospital, where the therapists were trained in Europe and the Philippines, and they, too, helped me greatly.
Laced through the disappointments of my recovery were miraculous moments of medicine. In December 2010, I researched The Hand Center in Philadelphia, PA, an orthopedic practice that focuses on the hand, the shoulder, the elbow, and the wrist.
My mom took me to meet with Dr. Allen at The Hand Center in December of 2010. He examined my mangled left hand and confidently announced that he could help me. We scheduled corrective surgery for January 2011.
Though I had waited almost eight years to get this surgery, there were some restrictions after I came home from the hospital. I could not use my left hand because it was bandaged heavily. I had always been a right-handed person, but since my stroke, I’d become a lefty out of necessity, my body slowly learning to adapt, to develop new ways of functioning, like switching its dominant hand. The body’s ability to compensate and adapt continually impresses me. With my left hand, I can feed and wash myself, and I can write, though not quite as well as I could with my right hand. I can also use my left hand on my quad-cane when I walk.
But the post-surgical restrictions didn’t bother me because the final outcome was a great success. My fingertips, bent back into hooks, were straightened, giving me greater flexibility, and improving the aesthetics. Though I would never look as I once did, parts of my body were returned to me, while others became new and, after time, familiar.
I had been out of the hospital for six years, but my life is still characterized by ongoing treatment. In particular, physical therapy has played an important role in my recovery and quality of life.
I also tried acupuncture therapy to see if it would help with my tone (spasticity) in my leg. The needles were inserted all over my right arm and right knee. The needles in the palm of my hand were quite painful, while the rest were only slightly uncomfortable. I had acupuncture three times a week for roughly a year in 2006, but with few long-term results. For a few hours, the stiffness in my right knee would dissipate, but it would always return. Once again, we decided that surgery was the best option, transferring tendons above my right knee and executing releases on the toes of my left foot, which, like my left hand fingertips, had curled after the stroke. This was my fourth and last surgery with Dr. Netter.
In order to manage the long-term and ongoing symptoms of Pseudo Bulbar Affect, I see both a psychiatrist and a psychologist. Depression, distinct or coexisting, is another facet of my post-stroke emotional life. Exacerbated by PBA, my form of depression has unique characteristics that make it difficult for other people to understand my emotional outbursts and their underlying causes. Medications such as Zoloft or Prozac, often successful in treating normal cases of depression, do not work as well in cases involving PBA.
My psychiatrist, who has worked with one other PBA patient, focuses on medication. So far, we had tried three different kinds: Cymbalta, Lamiktal, and Pamelar. Used to treat depression, Cymbalta’s side effects were terrifying; I experienced violent thoughts and urges and had to discontinue my use. Lamiktal, a seizure medication, was first given to me during my time at BTU, and thankfully, it successfully prevented seizures and I still use this now. Later, my psychiatrist believed Lamiktal would also aid in mood stabilization, but again, when my dosage was raised, the violent thoughts returned. Eventually, Pamelar, a tricycle drug from the seventies, proved effective as I slowly built up my dosage.
Seeing a psychologist for the past three years has allowed me to gain insight about my condition. My psychologist does this so well because of his affiliation with BTU – he has worked with a lot of brain-injured people in the last 20 years. He starts out with every session by asking me how my mood has been since I last saw him. And after more than 3 years of seeing this psychologist I can definitely tell him that my mood has definitely improved a lot – to the point where I only see him every three months. He is great psychologist and I am so happy that he has helped me so much.
At this point, I still cannot work, which is hard for me. I miss using my nurse’s education, and I miss the busy schedule of working two jobs. But my priorities must be focused on regaining more of my lost functions. I understand that I will likely never regain one hundred percent of what I lost, but I plan to work toward regaining as much as possible.
I feel much love and gratitude for my mom for her continued support and advocacy, but sometimes I would like to remember what it felt like to live on my own again. My mom was surprised when I could plant myself in a new state with no friends, as I did when I went to nursing school and worked my first jobs, and I, too, prided myself on that ability. I hope and pray that someday I will be able to live on my own again, if I want to. I’d also like to have another job, and to be able to get to work on my own.
Going on government-supported disability sometimes challenges my sense of self as an educated professional. I occasionally feel bitter when I feel I have wasted my education at Johns Hopkins. Though rationally I understand that knowledge is never wasted, it still feels unfair not to practice what I learned.
As the ten-year anniversary of the stroke (July 29, 2003) approaches, I try to focus on the blessing of being alive at all. At the first hospital, before anyone knew whether I’d live or die, my mom had last rites given to me. I try to focus on the fact that I am not in a coma, or minimally conscious, but a fully conscious, thinking, feeling being. I try to focus on getting my voice back, a voice I can comprehend. I try to focus on the surgeons and therapists who did such good work for these functions to exist.
I would like to just take a few minutes to talk about some amazing patients at ERU. Unfortunately only one of these patients is still with us. They were all men and all of them were under thirty. One had only lived on this earth for 17 years and then had a very bad car accident. He had to go through 9 hours of plastic surgery on his face to rebuild it, then had to be fitted for plates in his cheek bones. This patient never spoke again but he always had a smile on his face when I would come into his room. Obviously he knewmy voice even if he could not speak to me. He lasted 6 years with the last 4 at ERU. He died five years ago on the forth of July. He will be very much missed.
Another patient had an AVM like me. But our situations were totally different. Unfortunately he was found in his shower and who knows how long he was on the floor before someone found him. This is another patient who could see but not talk to me. Unfortunately this patient did not respond to all the physical and occupational therapies. They stopped working with him about 6 months into his recovery. He still lives at ERU and has been there at least 12 years.
And probably the saddest patient I met was a college student who had been abroad for his junior year and was in a situation that had to have been a nightmare. This young man was robbed at an ATM in Italy, and these thugs beat him so badly and then they threw him off a local bridge. They took his wallet so that when he was found there was no way to identify him. His parents had come to see him for Thanksgiving but he never appeared. He was found in the hospital after someone started giving pictures to the networks to try to find his parents. He came home and at first he was in Kessler in West Orange New Jersey, but when he was no longer acute he moved to ERU in Edison. This young man had so much damage to his brain that he never spoke again. He died in 2008after being at ERU for about 2 years.
My mom told me that the Extended Recovery Unit was the saddest place she had ever experienced. I have a different account of my time at ERU – maybe just staying at this hospital as long as I did makes you a little guarded. You could easily be institutionalized here if you don’t do anything on your own. Basically the nurses and Certified Nurse Assistants feel sorry for you and might not give you a chance to let you try to do things on your own. Luckily I did not become institutionalized because I wanted to be as independent as I could be. I was at ERU for 18 months but I was so ready to leave when we did. I probably could have stayed at this place for at least another year.
Thanks have to be given to my mother again. I can’t say it too much what an amazing mom she has been and will always be. I really hope that this writing will give some insight and hope for anyone who has had similar experiences. I hope you can try to understand what can happen to anyone’s life in a minute. Though I would never have chosen this life – I am still here.