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An Elephant in the Room

As a labor and delivery nurse of 25 years, I worked with many doctors. One of the anesthesiologists I worked with for 20 years placing epidurals for pain management would ask the patient a few questions after the procedure was completed. He would always ask her if she had any metallic taste in her mouth, sudden numbness in her lower body, and finally, if she saw any elephants in the room. Usually the patient would say no to all three questions.

One patient, however, answered yes to seeing an elephant in the room. My eyebrows shot up in disbelief. I asked her where she was seeing the elephant and she looked at me. The anesthesiologist and I started to laugh, then stopped. Wait. Me!? I mean, I'm not slim, but I don't think I’m the size of an elephant! She and I had a good laugh together after she was comfortable.

I have always had a deep love of elephants. At home, my parents had several wooden elephants that our African neighbors would carve and ever since I have been intrigued with them.

Elephants are emotional giants. Their intellect and feelings of empathy never cease to amaze me. They form tight family bonds and live in matriarchal groups. They can each have their own personality whether they are bold or shy, laid-back or short tempered, curious or afraid. Joy, anger, grief, compassion, and love are the finest emotions that these massive creatures have. Joy is expressed by bellowing and blaring through their trunks in the wild. This often happens when they get together with friends and family. Love and affection are shown between the mother and calf. Rage is expressed when they feel that their calves are in danger. They show compassion not only to each other but to animals that are not their own.

When an elephant becomes distressed, their ears will flap out and they will emit a low frequency sound. The rest of the herd will hear it and go comfort them by stroking their trunks. They shake hands with their keepers by inviting them to blow into their trunks.There have been numerous times that elephants have protected, rescued, or helped their owners. The calves frolic with their keepers, laying on them, putting their trunks on them, and following them like little puppy dogs.

Elephants are great communicators which can involve both direct and subtle movements. They even occasionally use sign language. They are able to send signals over vast distances by using different sounds which can be interpreted by the vibration of the sounds on the elephants’ feet kilometers away. It is said that they can use over sixty different calls to communicate.

I could watch elephants all day and never lose interest in them! What fascinates me is that, if there is an elephant who is injured, weak or sick, they trumpet loudly and the rest of the herd will run to encircle the one who is in trouble. they do this especially for the calves if they are not keeping up with the herd. They will continue circling until the injured or weak can stand up and, even then, they walk with them and surround the vulnerable on all sides.

They also show signs of grief when one of the herd dies. They touch the dead elephant with their trunks and some even use branches to cover them. They repeatedly wander over to the deceased one to say their goodbyes and this could last for several days.

What special animals! We as humans can learn a lot from them.

When people say there is an elephant in the room, it usually means something very noticeable and different is standing out. I used to work with a nurse who had a strong family history of amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's Disease. Her mother, grandmother, and great- grandmother all had ALS. She often discussed her concern of getting this disease with us.

When her husband proposed to her, she said there was one condition on saying “yes.” She asked him if he would be okay with the decision, she had made not to have any children - whether biological or adopted. He understood her concerns and told her that she was the one he wanted to marry, and that decision would not change his mind.

One evening at work, she started dragging one foot. It was barely noticeable, but she felt it. She went to get tested immediately and she was diagnosed with ALS. I recall specifically the day I heard her diagnosis and I was horrified for her. Tears were shed as she was the sweetest person you could ever meet and it felt unfair that this disease would come to her.

She left the labor and delivery floor and went to a surgical center where it was not as physically demanding. I actually saw her there as she was the nurse who took care of my daughter for a surgical procedure. Her symptoms were more pronounced, but despite this, she was a ray of sunshine and positivity while having to live with this monster of a disease.

When her symptoms became worse, she left her job, but she had more work to do. She was very instrumental in educating people about ALS and even went to congress to ask for more money for research of this terrible disease.

As a nurse, she could share with people both the medical aspects of the disease and the emotional toll that could affect her and her family. I was so impressed by her work that I would message her and tell her she was my hero. She battled for five years. Eventually, she entered a phase of disease called “locked in syndrome.” This happens when the disease progresses to paralyze the patient from the shoulders down to the feet. When it came time that she needed life support equipment, she declined all care except comfort measures. She passed away comfortably with her family by her side, just as she’d wanted.

I remember thinking to myself, “Please God don't ever let me have that disease. I'll face any other disease, but I beg you, not ALS.” I didn’t think I would be strong enough to handle that awful disease and I wouldn't want to put my family through chaos and devastation. I asked God just to take me to heaven while I was sleeping. God, however, had other plans for me.

In October 2021, I started manifesting some concerning neurological problems and began thinking I may have Multiple Sclerosis. That diagnosis was manageable. I went to a neurologist at the hospital where I worked and she ordered further testing with vast amounts of blood work. The blood work ruled out all autoimmune diseases.

While the blood work brought the good news of ruling things out, it did not provide a diagnosis. Fear began to creep into my mind. The neurologist ordered further neurological testing, which revealed extensive nerve degeneration. I was referred to the ALS clinic in Philadelphia for further testing and examinations and after 6 months of diagnostic and neurological testing, I was officially diagnosed with ALS on April 26, 2022.

My world as I knew it had shattered. I was horrified, scared, insecure, lost, and devastated. It was difficult telling my family I had ALS. I was very concerned to see if it was genetic or not and the doctors ordered a test which would determine this.

Research indicates that the genetic aspects of this disease are 5-10%. I was happy to learn that mine was not the familial form and this helped ease the concern of my children getting it. I shared the news with very few of my close coworkers and asked them to keep it to themselves.

I had to take a leave of absence from work as my symptoms became more pronounced. The doctors changed my leave from short term to long term disability. I had supportive people in place, and I then allowed my diagnosis to be shared with all of my colleagues. I also formed a public Facebook group called “My Life with ALS” where I started blogging and sharing songs that had all the words in them that I couldn't express but felt.

That’s when I thought about elephant behavior and the way they encircle the weak, frail,or dying. There is a special group of people encircling me now. I call them my tribe of elephants. A former coworker made bracelets for me to give to the ones encircling me and it has a picture of an elephant on a simple oval button, along with the inscription “Cookie’s Tribe” after my nickname at work.

The ones encircling me called right away to express their shock at the news. They offered me help and asked if I needed anything. They took me out to lunch or dinner to help normalize my life. They helped by preparing meals. They even offered to help get me dressed and situated in the morning, since I would be by myself from 6 am to 4 pm.

I reassured them that I was not that bad to need that kind of help but just the offer of it was very humbling. Others would come over and sit to keep me company. We would eat lunch together, watch TV or just chat. These are the ones that I will allow to see my weaknesses and, eventually, the broken paralyzed body.

ALS is ugly and it's quite humiliating to allow others to see the ravages that come with this disease. I was given a prognosis of six months to three years. As I write this, I am nine months post diagnosis. Fortunately, I am a candidate for clinical trials and I’m also involved with research for ALS including testing breathing devices, tissue biopsies, blood work, lung capacity testing and, eventually, post- mortem testing to contribute to the research. And now I journey on, with each day bringing something different, but knowing I am surrounded by my tribe who continue to care for me in all the ways I need.

Ruth Kennedy grew up in Nigeria, West Africa as a daughter of missionaries. She developed her love of medicine at that time because her parents ran a medical clinic and leprosarium and she would often spend time there helping with the patients. She came to the states in 1977 and has lived her life since then in the Philadelphia area. She obtained a B.S in science at Philadelphia Bible College and graduated in 1984. She got married and had two children. She eventually went to nursing school and graduated with an associate's degree in science and a diploma in nursing. She worked from 1997 to 2003 on the post-partum floor. She then transferred to the labor and delivery suite and has worked there ever since then. In 2022, she was diagnosed with ALS, more commonly known as Lou Gehrig’s disease. Her book, "Beautifully Broken: Finding Peace after Trauma, Tragedy, and ALS (Story Sanctum, 2023)," is available now.

Photo credit: Krin Van Tatenhove via Midjourney AI


cory meron
cory meron
2 days ago

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