Wow, Communication!

It was Sunday June 12th, 2016 and I sat enjoying a Wendy’s chicken sandwich, fries & a fountain coke. My friend Gabby had brought it, at my request, when she came to Inova Fairfax Hospital to hang out with me for the evening. This was my last memory.  A rare and unexpected fungus ignited my cystic fibrosis lungs. After an all night effort to keep my lungs breathing, I was intubated and placed in a medically induced coma. My life was saved that night by an ICU pulmonologist.

My next memory, sometime in mid July (I am not sure the exact date). I lay in a bed in the Cardiovascular ICU, turning my head to the left and seeing my mom in the hallway. My mind was blurry, I couldn’t move my limbs, my body was still. Tubes were coming out of my chest, my neck, my arms, and a tube was coming from my mouth, breathing for me. I couldn’t talk. I couldn’t move even if I wanted to. I learned that movement would come back in time but not right then. What happened? Where was I? Why couldn’t I move? My eyes looked left, looked right, up and down and back again.

My mom hurried in telling me she loved me, telling me I had a double lung transplant. “The doctors saved you. You had a lung transplant. Do you understand?” Apparently this was the 5th day she’d come in to tell me this. The medication they use in a medically induced coma has an amnesia effect. I understood what she was saying but still had so many questions running through my mind that I wanted to ask, but couldn’t. The only way to communicate was raising my eyebrows, they told me, to only “yes” or “no” questions. So I raised my eyebrows, signaling that I understood.

The following weeks, patience was tested.

Is the pain below your waist? Is it this foot? Is it that leg? Communicating only with yes and no questions is frustrating. Like a puzzle that sometimes goes unfinished. I just wanted to be able to tell them what was hurting or which way I wanted to be situated. My family adapted and quickly learned my facial expressions when I was annoyed, unhappy, or in pain. We are meant to communicate with our mouths, being specific. I couldn’t do that.

I became the best listener. I would overhear my doctors in the hallways talking about my medical care or my mom talking with visitors. When my friends came to visit they would sit there and tell me what was happening outside the hospital walls. Sometimes I would try to mouth words. Some were understandable while others not. I would feel frustrated they didn’t understand and would mouth more drastically thinking that would help. It only made it harder. Finally I would give up.

Communication tests people’s patience. Communication prevents confusion and let’s people relay their thoughts. Communication saves lives and ends wars. Communication is key to, well, everything. I was so happy when I was able to write, even though chicken scratch, with hands just beginning to reconnect with my brain, just beginning to move again.

The feeling at the time was helpless but I knew that I was going to make it through. I knew it would take a long time but one day I would be able to enjoy my new lungs. That’s what happened but those memories of last year remain clear in my mind.

Have you ever been in a situation where you had a hard time communicating?

Compensation

Today is the first day of fall 2017 and the first day of my blog.  I found this post my Dad wrote last year while I was still hospitalized from a double lung transplant I had on June 21, 2016 with complications.

September 1, 2016:

“Wow, what a summer. Thankfully, it is almost over and fall will soon begin. My father died in mid-September when I was a young child. I have always loved the spring for the obvious reasons of better weather and the proverbial rebirth of life but my dislike for fall had to do with the negative emotions connected to my father’s death. But now there will be joy in the fall when my bonnie lass returns to the warm embrace of her home. The falling leaves and the cool air will no longer be companions of death but of life. Mr. Emerson has an essay on compensation, which seems to be appropriate. We may not always be given what we want or need at a specific point in our lives but life, at least it seems so to me, has a way of compensating us in other ways. I have been compensated twice now in the fall, the first time when Jackie survived her birth trauma and now having survived her lung transplant. Isn’t life amazing? I look forward to the crisp air and the falling leaves, they will be auguries of life, of the new life my daughter will be embarking upon with renewed energy and vigor. What a testament to her spirit. Twice now, I have been witness to her indomitable will to live. I am so proud of this amazing human being for her zest for life, for the many friends she has, and for her desire to be a productive member of our society in spite of the hand life dealt. What a gift I was given to be her father, I truly have been compensated.”

After the initial shock of finding out I had a double lung transplant, I was excited. I made plans to run for miles and go on long hikes in the mountains. These are things I had so badly wanted to be able to do but couldn’t due to coughing spells and feeling out of breath due to cystic fibrosis. With new lungs and the ability to breathe again, I have gratefully made plans and accomplished some of them. But due to an array of complications, I physically can’t accomplish running miles or hiking mountains right now.  Namely, the medications that saved my life have harmed my hip-joint. It acts up badly these days and eventually will need to be replaced.  Yes, a hip replacement and I’m only 26 years old, but I am going to look at that as small stuff after all of the big stuff I’ve been through.  As human beings we have a tendency to initially focus on the negatives, what we don’t have but want or think we need but can’t get. We all have to bring our minds around to think that in time, things fall into place, think about all that we CAN do and all of the ways life has compensated us.

With my favorite season, fall, rolling around I am focusing on compensation, on how I truly have been compensated. Here are some of the ways:

  1. Being alive
  2. Supportive friends
  3. Having a great job
  4. Great food in awesome restaurants
  5. An amazing Mom & Dad

 

How have you been compensated in life?