For four years, I worked in the hematology lab at a major cancer center in Rhode Island. During that entire time, it never occurred to me that I would one day become afflicted with one of the blood cancers that I had dealt with every day as a healthcare professional.
By the time I was diagnosed in November of 2018, I had already spent five months in the hospital suffering from a mysterious ailment that none of my physicians could identify. It wasn’t until I was sent to Brigham and Women’s hospital in Boston that I was finally diagnosed with non-Hodgkin’s lymphoma compounded by a rare autoimmune condition called Adult-Onset Still’s disease.
Strangely, the diagnosis was a relief. I finally knew what was wrong with me, and I knew there was a good chance that I would be cured. But the relief was short-lived. Being bedridden for so long had made most of the muscles in my body atrophy to the point where I was not able to move in my bed, eat on my own, breath without a tracheostomy tube, or even go to the bathroom without the help of a catheter and rectal tube. The intense pain, indescribable discomfort, and immobility created a living hell that no person should ever have to endure.
By the time of my first chemo treatment, I was in such bad shape that I couldn’t even pick up the remote control for the TV in my ICU room or use my voice to communicate what I was going through. Nodding, blinking, and making barley-legible scribbles on paper were the only ways that I had to make my thoughts and feelings known. To make matters even worse, I began to suffer from a condition called ICU-psychosis.
ICU rooms usually have no windows. As a result, the normal 24-hour sleep cycle, usually triggered by sunlight, can become severely disrupted. Patients confined to ICU rooms for extended periods of time can have their circadian rhythms disrupted. For many patients in this situation, the seconds, minutes, and hours of the day all seem to merge into an endless eternity of suffering.
In my case, I experienced hallucinations, severe depression, and intense panic attacks. The psychiatrist who treated me recognized my symptoms and prescribed mirtazapine. She also gave strict instructions that the lights in my ICU room be turned on for at least twelve hours per day. In the beginning, I fought this. I didn’t like the intensity of the light, and felt that the darkness gave me some peace.
Fortunately, I was not given a choice, and the treatment began to work. I gradually began to recover my sanity and I developed a daily routine again. I could once again distinguish morning from afternoon and night. I slept eight peaceful hours per day and gradually began to read and watch television again. I still had a very long road ahead of me, filled with many difficulties and challenges, but recovering my daily rhythm gave me hope that my course of treatment would one day lead to a normal life again.
For anyone stuck in an ICU or hospital room with no window, I strongly suggest you keep the lights on for at least twelve hours. It may seem annoying, but it serves a necessary function.