Count Your Blessings, page 10
My husband immediately adapted to his new job as caregiver. Before leaving for work each morning, he fixed me a peanut butter and jelly sandwich for breakfast and refilled my water bottles. Evenings and weekends, he made simple meals and tended to all my needs. In the beginning, when I felt especially vulnerable, he lovingly bathed me, scrubbing my back and washing my hair. The bond between us deepened.
Friends also came to the rescue, fixing meals and offering support. Ironically, a friend living in another state had broken her leg and ankle just two months before my accident. She phoned every week, my guide on this unfamiliar journey, and we compared our common recuperation, sharing experiences, coping techniques and laughter about the predicament in which we found ourselves. The companionship lifted my spirits.
Weeks turned into months. The doctor had ordered physical therapy to increase the mobility of what he jokingly called my “bionic” leg, but I was still not permitted to walk. That made me reluctant to venture outside my apartment. There were times I feared that I would never be able to walk normally or without pain. To alleviate the worry and depression that set in, I knew I needed more exercise. But how? Then it dawned on me: bed exercises. Leg lifts, stomach crunches, hamstring stretches, muscling homemade weights. I must have looked like an overturned turtle, lying on my back amid the pillows, arms and legs flailing in the air.
After five months, I was allowed to take my first full-weight-bearing, tentative steps in hospital-prescribed footwear. The bulky, knee-length black boot made me look like a Star Wars storm trooper, but it reduced the pressure on healing bones and soft tissue. A month later, I slipped eagerly into my athletic shoes. My gait was awkward at first and I leaned on one crutch for balance. But with practice, the blood vessels, muscles, tendons and ligaments, damaged during surgery and withered from lack of use, gradually adjusted to the job demanded of them.
Now I’m walking comfortably. And there have been other improvements. I’ve had plenty of downtime to think about what’s important to me. Allocating more time for healthy eating and exercise is at the top of my list, as is paying attention to my inner Type B voice. That means no longer accepting every invitation or taking on every task. I feel less harried, more at peace with myself. My body is healing and so is my spirit. I can honestly say I’m grateful for the physical and emotional challenges I was given to overcome. The experience made me stronger, more resilient and, I hope, wiser. My bionic leg and I look forward to striding confidently into the future, one step at a time.
~Jennifer Crites
One Second Changed My Life Forever
One of the secrets of life is to make stepping stones out of stumbling blocks.
~Jack Penn
As a little girl, I dreamed of owning a ranch with horses and marrying a wonderful man. I never dreamed my world would come to a crashing halt after a traumatic brain injury. You see, I had to be a daredevil, riding the craziest horses, driving fast, always on the go. This time however, I pushed it too far. I had put a two-wheeled motorized scooter on the fastest setting I could. Next thing I knew, I was flying off the sidewalk. The machine had jumped the curb, hit the street and soared in the air with me still on it. Coming down, the machine was so heavy it thrust me head first onto the concrete street, cracking my head. Everything went twirling and into a blur; yet I didn’t pass out. I went into shock. Thinking “I’m tough,” I refused to go to the hospital. When I awoke the next day, I knew I was in trouble. When I spoke, I started with the end of the sentence and moved to the beginning of the sentence. My family rushed me to the emergency room, where they found a spot on my brain.
Sitting in the specialist’s office while the doctor told my fiancé that I was not the same person he fell in love with was hard. He said that both the front and back of my brain had serious damage. Because of the severity of the damage, he said, I would never be the engineer I had been. He urged me to find jobs that required only one task at a time. I actually believed him. Taking a leave of absence from work, I started rehab.
My fiancé married me anyway. I told him that I would try my best to get “me” back. We bought that ranch I had always dreamed of, with beautiful horses, and settled in.
At first, I seemed normal. You wouldn’t have noticed the subtle differences in my behavior unless you had lived with me. I “knew” without a shadow of doubt that I closed the horses’ gates so they wouldn’t get out. I saw myself actually closing the gates. A horse or two got out. You can guess who got in trouble. I knew I turned off the stove after cooking. I would talk about a memory and I would meld one from years before with one that happened recently. On it went. I soon found myself on my own because my husband would spend more time around friends and less with me.
I became suspicious of everyone. I thought people were talking about me, thinking I was weird, because that’s how I felt. What was worse was no one could tell I had anything wrong with me on the outside until, under pressure, I started to stutter. I would say sentences backwards, and they would get distressed looks on their faces.
I became self-conscious about everything I said and did. I began isolating myself from everyone, alone in the house or outside with the horses. Even my family did not know how to deal with me. I went from being well-liked to being cold and distant. I started crying all the time. I felt as though I had lost my mind. I didn’t understand what was happening to me. I was incredibly lonely and no one knew my pain.
As time passed, my husband and I fought constantly. I tried desperately to prove to him that I wasn’t lying about closing things, opening things, hiding things … you name it.
Not being able to handle it anymore, I said a prayer. “God, I know he didn’t know what he was getting into when he married me. Please tell me that I am not the lying person that he thinks I am. Tell me that I am worth something to someone, anyone, somewhere. Tell me that I am worth loving. Do you even care that I am literally stuck in here with my thoughts and I cannot get out? Do you see where I am? God, please save me and tell me what to do.”
Collapsing on the bed, I heard a little voice in my head that simply said, “I want you to leave. Just leave. I want you to leave.”
“But God, you don’t want us to leave a marriage!” I retorted.
“His heart is hard, and I want you to leave. You have friends and I will supply everything you need.”
“What friends?” No reply came.
There was no way I would leave without my horses. How could I afford to board huge animals on my minimum wage job? How would I pull this off? I decided it was better to obey and that is when the first miracle happened.
Old friends who I had distanced myself from a few years before offered to board my horses, free. That same day, another miracle occurred when an old colleague of mine said I could live with her for free until I got on my feet. Then, as if pre-planned, the third miracle arrived. Another old friend told me her husband was hiring at his office. The position was a perfect fit and paid more than enough for me to survive. Yes, just like that.
At my lowest point during this time, I had lost my dream home to foreclosure, been divorced, lost my stepdad to a rare disease, rushed to several hospitals for my mother’s weak heart, battled creditors, lost a few jobs due to “mistakes,” and I had put down my dear friend of more than fourteen years, my sweet dog, Nina.
Now, I manage an office. I successfully passed all four of the State Life and Health Insurance exams—which most people fail one or more times. My mom and I are best friends! I am at peace with myself while learning about the trials of head injuries and their impact on people’s lives.
It is amazing when everything falls into place once you are back on the track you started. I believe there is a place in you that can overcome obstacles you cannot see past. There is hope; there is a promise. It might take some time, but you will get there.
I sure did.
~Susie Dinsmore
Never Lose Hope
The only disability in life is a bad attitude.
~Scott Hamilton
From a young age, I was intelligent and athletic and lived a pretty easy life, with my future full of trophies and awards. I met my true destiny at the age of thirteen as I lay on a soccer field, clinging desperately to my last shards of consciousness. Finally, I let go and tumbled into a world of darkness, leaving behind pandemonium as people struggled to help an unconscious girl who, just hours ago, had been perfectly healthy. Maybe if someone had warned me how drastically this was going to change my life I would’ve clung to my consciousness and made a miraculous recovery.
Three months later I was still spending most of my time in bed. I was in eighth grade at the time, and still had not returned to school. Most of my friends had become distant and doctors did not know what was wrong with me. Every day became more and more frustrating.
Eventually I returned to school on a part-time basis. Instead of getting the sympathy I expected, I received dirty looks and harsh rumors about how it was “all in my head.” Things that were once easy for me became extremely difficult or altogether impossible. I could never concentrate on my schoolwork and the sports I’d once excelled at were completely out of the picture.
Somehow, I made it through the year and moved on to high school. Since my dreams of being a soccer and cross country star were ruined, I joined the drumline instead. I passed out at nearly every band practice and people were constantly complaining about always having to take care of me. Some people even tried to get me kicked off drumline. Luckily the band director stuck by my side. I think she knew how desperately I needed somewhere to belong. Still, I continued to be bullied and labeled as an “attention-seeker.” I was even abandoned by the few friends I had left.
As I struggled through my health problems and loneliness I kept promising myself that things would get better, and eventually they did. I made friends with a few members of the drumline and even developed a crush on one of them. In my PE class I met a few nice girls who were on flagline, another section of the band. By the end of the year they convinced me to try out for flagline, and I made it! My crush also asked me out.
In my sophomore year, things began looking up. Most of the flagline girls understood that my sickness was real and they took good care of me whenever I passed out. My new boyfriend also helped care for me. Finally, I had an understanding group of friends and a boyfriend who loved and supported me through everything. Unfortunately, my struggle still wasn’t over. In October, my health began deteriorating and I developed severe throat pain and lost my voice. Once again, I spent most of my time in bed and couldn’t attend school, but this time I had friends to help me through it. In December, I still wasn’t better and my doctor decided to send me to the Mayo Clinic in Minnesota in hopes that the doctors there would be able to solve the case that had puzzled every other doctor I’d seen.
After a week of testing, the Mayo doctors diagnosed me with a problem called POTS, postural orthostatic tachycardia syndrome. They were certain that the fatigue, headaches, passing out, brain fog (trouble concentrating), and other problems I’d been suffering from were not “in my head” and that I’d outgrow the sickness within a few years. They also determined that my throat pain and voice problem were caused by an inflamed nerve, which could be treated with medication.
It has been three months since my return from Mayo and my voice has made a full recovery. Although I still suffer from the many painful symptoms of POTS, I am extremely grateful to finally have a name for my illness. If it hadn’t been for my family’s perseverance in finding a doctor who could diagnose me, I’d still be wondering if my problem really was “in my head.”
In the end, I’m glad that no one warned me what would happen if I let go of my consciousness. I may have lost the easy life of trophies and popularity that I used to have but right now I’m still happier than I’ve ever been before. I have new friends and an amazing boyfriend whom I never would have met if I hadn’t been forced to quit sports and join band instead. I understand now that no one can be perfect, no matter how hard they try, and that strength isn’t measured by how far we can run or how many pounds we can lift but instead by how we handle ourselves in the face of adversity. And, most importantly, I’ve learned to never lose hope because perseverance can get you through any situation, no matter how impossible it may seem.
~Carly Collins, age 15
Standard of Care
Use your precious moments to live life fully every single second of every single day.
~Marcia Weider
I was lying in a hospital isolation room on a morphine pump—blood transfusions in one arm, a chemotherapy infusion in the other, and my insides packed up with long, burning radioactive rods. My vomiting had become so violent that I had filled up every container in the room. I called to the nurse for anything else to throw up in. She replied, “It’s such a pain to come into your room.”
Having stage III-B cervical cancer wasn’t my fault, not that cancer ever really is anyone’s “fault.” Before I was diagnosed, I was a healthy, non-smoking registered dietitian, married to a pulmonary specialist. Being in the health care industry, I was especially diligent about my yearly pap smears, labs and everything else tagged as “preventative.” But it wasn’t enough. Somehow my pap smears hadn’t been properly read—five times in a row.
My story begins in June 2002. I was happily breastfeeding my first baby and heading for my initial postpartum checkup. I had been seeing the same doctor for four years and completely trusted his care. For the first time in my life, the doctor called to let me know that my pap from my last checkup had come back abnormal, not to worry, that I should be re-tested. What I wasn’t told was that the note on the lab report also read, “Cannot rule out serious lesion.”
I followed instructions and had another pap. The doctor said that the results were perfectly normal; there were no cancerous cells. What I wasn’t told was that my test was positive for a sexually transmitted disease. Having only been with my husband for the past eleven years, this information would have certainly raised my eyebrows. At the very least, if somehow I did have this disease, the “standard of care” would dictate treatment with antibiotics. Instead, hearing the words “normal pap” over the telephone, I breathed a sigh of relief and went on with my life.
In November, I became pregnant again and went to the doctor for my first trimester visit. I asked if I needed another pap along with the slew of standard first trimester tests, but the nurse said no, since there was a normal pap a few months earlier.
Around Christmas, I began experiencing lower back pain. By early February, it was excruciating, but my doctor could find no cause. I began making the rounds to all kinds of specialists from neurologists to orthopedists, but there seemed to be no justification for my suffering. The implication from the medical world was that I was an emotional, drug-seeking pregnant woman with a low threshold for pain. I was even referred to a therapist to help me “cope.”
By the end of my second trimester, the pain had become so agonizing that I went on disability. I was seeing a pain management doctor who was trying to manage my pain with Class B narcotics, which barely took the edge off and mainly left me feeling “dopey.” When I went for my twenty-six-week ultrasound, the doctor who performed it took one look at me and said, “Something is seriously wrong with you.” This doctor had known me for many years, and just hearing him acknowledge that I wasn’t out of my mind gave me vindication. He immediately ordered an MRI of my back, but the scan stopped above my cervix and did not image my pelvic area. Nothing abnormal was found.
By Mother’s Day weekend, I was literally watching the clock to see when I could have my next round of medication. The baby wasn’t due until July 23rd, and I didn’t know how I could possibly endure that long. On May 14th I couldn’t take it anymore. I was admitted to the hospital and learned that I was in pre-term labor. I was given medication to stop the contractions and hooked up to a morphine pump. The nurses rolled their eyes at me, believing that I was just some drug-seeking, crazy pregnant woman. From their perspective, there was no real reason for my suffering.
Five weeks into my hospital stay, at thirty-four weeks gestation, I went into labor again and had a C-Section. I was thanking God when my daughter Madeline was miraculously born healthy, but the pain was still there. About four weeks postpartum, I was still bleeding bright red blood. My doctor said this was “normal” after a C-section, but when he finally saw me in his office, he couldn’t stop the bleeding. I had an emergency D&C and was hospitalized, this time for multiple blood transfusions. Finally, the bleeding abated and I was sent home.
Two weeks later, I was leaving for my post-surgical checkup with my OB-GYN when the phone rang. It was the office of an oncologist, whom I had never heard of or spoken to, calling me to schedule an appointment. When I asked the reason for calling, the voice on the other end replied, “Oh, you mean you don’t know? You have Stage III-B cervical cancer.”
The treatment was aggressive—eight cycles of chemotherapy, six weeks of external radiation, and the internal radiation described earlier. That procedure had to be repeated twice and was the worst experience of my life. When the doctor removed the internal packing at my bedside, I felt completely violated, as though my insides were being ripped out.
This treatment permanently damaged every private part of my body. As a result, I not only lost a kidney and needed a colostomy, but I now live with ongoing pain from the radiation damage.
After this horrific experience, my best friend prodded me to find out exactly what had been written on my “one” abnormal pap smear from the year before. To my amazement, my doctor’s office refused to release my records. The medical assistant in my office requested my results from the lab and got a printout of all my pap reports from the past five years. My husband and I gave everything to a medical malpractice attorney who gathered all my records and sent them to the Director of Cervical Cancer at John Hopkins Medical Center.
