As a child I felt a calling to help others. I started out as a nursing assistant working in home care, skilled nursing facilities, and eventually in a major medical center. Although I enjoyed all these work settings, it was home care that I enjoyed most. It seemed so natural to see the patient in their home, relaxed in their own surroundings. I enjoyed getting to know them on the intimate level that being in someone's home allows. Caring for others seemed to come naturally for me, and when I was introduced to the role of speech-language pathologist (SLP) I found my calling.
After graduate school I provided therapy to mostly adults suffering from head and neck cancer-a horrific diagnosis that leaves one permanently disfigured and robs one of the ability to communicate via a natural voice, and almost always affects the ability to swallow safely. Some patients seem to tug on our heart strings a bit more than others. For me it always has been the head and neck cancer patient population.
After several years of working in the acute care setting, I became an SLP in the public schools. I enjoyed working with children and their families. The schools offer the opportunity to follow a child over the course of several years. The caseloads were demanding and coupled with the demand of traveling between several buildings within 1 work day were very taxing. So when I started having trouble sleeping and my joints started to ache, I chalked it up to my job.
Many of us are guilty of putting the care and needs of our patients before our own needs. We push through when we're not feeling our best, we make up excuses for why we are exhausted, and we tell ourselves it really isn't that bad. I made excuses for weight gain and decreasing mobility but when I became so ill that I could not stay awake during the day, my joints felt as though they were on fire, and I could not lose weight, no matter how hard I tried, I decided to see a physician. Within the first few minutes of my appointment a mass was discovered on my thyroid.
Although on some level it was comforting to have a diagnosis, my heart sank when I heard the word mass. My mother's side has a history of medullary thyroid cancer and my mother is a survivor of epithelioid sarcoma. I immediately went for a second opinion. Given the history of cancer in my family it was decided that removing the thyroid was the best option. As an SLP with a background in medical speech pathology, I was well aware of what could go wrong with a thyroidectomy. For this reason, I sought a surgeon who I was confident could remove my thyroid without damaging the surrounding vessels. I felt confident that things would go as planned; the mass was fairly small and the ultrasounds did not indicate involvement beyond my thyroid.
I was prepped and wheeled into the operating room. I woke realizing I was in the recovery area. Although still groggy I overheard a nurse say "she has a foley, a line in her foot, they lost her pressure during the surgery and they transected her left recurrent laryngeal nerve." My first thought was "wow, that poor person is a mess," but then I realized the nurses were standing at the head of my bed and I began to sob. Later I learned that while there was an attempt at reanastomosis, it was unsuccessful and my left vocal cord was paralyzed. I stayed the night in the hospital. The following morning when the SLP showed up at my bedside to perform a bedside swallowing evaluation, I was numb with denial and anger. It was not until later that day when I saw my paralyzed cord during a scope, that reality start to sink in.
Returning home, I soon discovered how this injury would change my life. The coordination of breathing and walking, or walking and talking was no longer something that happened naturally, for the autonomic valving was gone. Also as thirsty as I was I could no longer chug water, and many of the foods I once enjoyed were now off limits as they could easily be aspirated. Although I was experiencing feelings of anger and loss, I was also humbled by thoughts of the patients I had treated with this same injury. I wanted to call every one of them and apologize from the bottom of my heart for the times I had insisted that their paralyzed vocal cord could be easily managed with a little work.
After a few weeks of speech therapy and a modified barium swallow, I decided I could manage this injury enough to return to work. During those first few days of attempting to work, the magnitude of what had been lost hit me. The stress was so great that I developed shingles in my eye and on the side of my head. I decided to take the rest of the academic year off. I knew the paralyzed cord was permanent, and I could feel the effects every conscious moment of the day, yet my mind could not accept it.
I became very ill, my body was not accepting the synthetic replacement hormone and unless I was diligent with my compensatory strategies for safe swallowing I would have a fever by midafternoon. It soon became evident that I would need to take an extended break from work and focus on learning to live with this injury. It was during this time my physician suggested a home visit by an SLP. My first reaction was no way! Not me! I did not need anyone coming into my home, yet it was exactly what I needed. As I greeted her at my door I wondered-was this how my patients felt as I first arrived? Was my house clean enough? Was my physical appearance as disheveled as my inner thoughts were? Was she going to judge me, because as an SLP did she think I should be able to manage my own therapy?
It took several years to return to a feeling of normalcy. I still struggle with my voice, ability to swallow, and I doubt I will ever be able to easily walk and talk at the same time. Recently I returned to work as an SLP and I am in the process of becoming board-certified in swallowing disorders. I have developed a greater level of understanding, empathy, and insight for patients. I have learned through my own misfortune to do my best to meet the patient where they are emotionally, not just physically. When they ask "how will I ever go out and eat in a restaurant again?" I can share my personal struggles with my fear of being in public and aspirating. Most of all I have learned the process of surrendering to fear and anger; hopefully, I am able to convey the necessity of this process to all who now come into my life. Often I think back to that little girl I once was, who only wanted to help people. I could have never imagined that through my own darkest moment would come a light that shines bright for others to find their way in moments of despair.
Alzheimer's Disease Resources
Alzheimer's disease is a brain disorder that slowly destroys memory and thinking skills. Learn about symptoms, diagnosis, and treatment. Caregivers can also find advice on how to provide everyday care, make the home safer, and respond to changes in communication and behavior.
Visit the website: https://www.nia.nih.gov/health/alzheimers