When Much Medicine Was Needed

For the past six months I have written updates on my challenges and progress in recovery.  This is the first time I have looked back to the days immediately after it was decided that it was not my time to die.   

I planned to join my brother “Max” and Tom Craig Tuesday morning on the final kayak expedition for their second book. I texted Max my ETA at his place, approximately 9pm Monday night.

When my housemate came home he saw my car in the driveway, and my cell phone charging inside. He correctly assumed I had gone out on my bicycle and incorrectly assumed I would be home soon.

I came back into consciousness a few days later, in UF Hospital's intensive care unit. I woke gently as if from a night’s sleep. Looking down at my body, I saw evidence of multiple injuries far worse than any I had ever sustained before. What the pain medication didn’t numb, felt achy all over.

Although I didn’t remember the accident, I remembered setting out on my bike, and knew that I hadn’t reached my destination. I put two and two together. I felt calm about it at first. It wasn’t until the pain kicked in that I experienced waves of fear, heavy-heartedness and dread. “What have I gotten myself into? Will I be able to handle this?”

I was eager for company and pleased when staff entered my room. I effortlessly stepped into the role of patient. I could understand everything they said. Everything was ok.

Except…. There was something strange. I watched myself remain silent. It was like a movie or a dream. I realized that I couldn’t speak, and assumed it was a condition that would soon wear off.

I quickly became dissatisfied with silence. I needed to let my brother and others know where I was. I tried to communicate my thoughts, and no words came. The desire to communicate became urgent. I wanted to scream "I’ve got something I need to tell you!" They understood only that I was in distress.

To my surprise, my brother soon came to see me. My relief was enormous. There were tears in both of our eyes. Unfortunately, the relief was short-lived. My ability to make my thoughts known to him were no better than it was with staff. He kept talking to staff. I wanted to correct or clarify, and couldn’t. Also in his excitement he was speaking quickly. This and many sounds literally hurt my head. I needed him to slow down. I couldn’t tell him. I soon realized that stress would interfere with my brain’s ability to process information.

Fortunately the building blocks of communication started to come to me. And mostly I did take to the job of being a patient. Periods of agitation were not the norm. Plus, I slept much of the days or found ways to get through it more and more.

I did feel a strange disorientation. I didn’t know the location of the hospital, and didn’t remember getting there. From my room, I could see another building and a neon sign. I couldn’t see the street or the sky. I watched it become dark and light and dark again. It was like time lapse photography. I couldn’t tell how many days went by. In ten days, I only left the room one time, a trip down windowless hallways to the operating room. Lastly, the effects of the drugs and/or my head injury gave me some trippy experiences. Have you ever been still awake, maybe soon to sleep and yet you started dreaming? It was a little like that, and a little like a chapter from Alice in Wonderland. Fortunately weird doesn’t phase me. I took these aspects in stride.

Soon I started speaking some few words. At first I didn’t have much success beyond “yes” and “no.” A speech therapist presented me with a “letter board.” I tried without success to point to the letters to spell out sentences. I had a little more success when I began being able to write. The problem with both is that I was still thinking in long complicated sentences with polysyllabic words, and I couldn’t concentrate or remember what I was thinking long enough for the time it would take to spell or write it out.

The second knock down wave of emotional distress came in relation to a combination of pain and non-communication. I couldn’t explain to them the specifics about which of the things they were doing to me hurt and why. Staff often tried to get in and out quickly, and I was often unable to make my requests known in that time frame. I was frustrated by my inability to communicate, and I felt very cranky as a result of the pain and fatigue. Inside of me was a noise from childhood, the cry of a tired frustrated child basically saying “I can’t take anymore of this!”

I was dismayed at the way I was reacting. It was like I was no longer at the controls. Fortunately, I did have enough presence of mind, to issue a wake up call to myself. I knew that if I didn’t make changes, I was headed toward more misery. I feared that I would alienate my helpers. I needed to turn this around!

Fortunately help was on the way. Joyce Colton was the next person after my brother to visit me. Her warmth and affection cheered me tremendously! I had made gains in my speaking, and could actually communicate with her! According to Joyce, my former partner Huyen from Texas found her through the internet. She asked Joyce to bring me miso and vegan food. Huyen knew that I had no solid foods yet. She long ago discovered that my heart could be reached by serving delicious healthy food served with love. Joyce, who took an NVC course at my home, is a key organizer of our Vegan Meetup, and a dear friend. She was the perfect person for this mission! Her food was manna from heaven. Her visit was an island of joy in a sea of struggle.

I remembered this visit when things got tough that (?) night. I was rocking and writhing again. I was tired emotionally as well as physically when the third knockdown wave of distress hit. I was thinking the kind of thoughts that usher in depression. “This is horrible!” “I’m doomed!” “What have I done?!” Alone and in despair, I longed for support and imagined there was none to be had. I felt the hopelessness taking me.

One thought brought dramatic change. I remembered Joyce telling me how Huyen reached out to her to advocate for me. My sense of being alone ended. I felt relief, ease and warmth in my body remembering that I was loved. There was still pain in my body, but I wasn’t writhing any more. I could be still. I was soon to sleep.

Huyen and I were a couple for about 7 years. The last seven years as shared on Facebook with pictures, reports and other accounts show her enjoying good times with her companion Mark. That her care lived on and emerged in this way, made it even more powerful to me.

And Huyen kept on advocating for my well being. As a physician she was able to inform, guide, and assist me effectively. She became a star player on the incredible support team that she helped to form and stay together.

My early sense that I was alone in a horrible situation, soon fell before a sweeter reality. Word soon reached me of the prayers, concern, and support of people far and wide. Love lifted my spirit. My attitude got much better. I was able to think, act and respond more effectively. A positive feedback loop began. Moved by an outpouring of love of family and friends I began greeting staff and others with gratitude and enthusiasm. They responded to my enthusiasm and gave their service more joyfully. The support I experienced helped me face the painful times ahead with courage, joy and optimism.

And there were plenty of challenges ahead. The peak of pain was still in front of me. There came times that I needed to advocate for myself. And there have been many more times I have felt despair, fear –even panic. However, hope has never been far away. I had turned a corner, and started to remember my power. I have faith in power that is greater than me. And I am not just talking about an unseen force. I have faith in the love and care of family and friends. I have gratitude for them and for the amazing medical and rehabilitation support given to me.

I thank G*d for this abundance of support. And I tell you, love is the best medicine of all!