Thursday, January 24, 2013

escape from reality

We have been thoroughly enjoying our daily escapes from the hospital. The rather unpleasant accommodations of a hospital ward room are reason enough to desire a change in scenery. It is lovely to be able to share in our own private space. We still have our morning routine. I arrive at the hospital with a thermos of tea, or rather, some tea to go with James' sugar and cream. James wakes up slowly to take his medications and prepare for the day ahead. He has physiotherapy in the afternoon three times a week, but otherwise, James and I brace ourselves for the cold, and head across the street to our little apartment. (We still go home for a few hours on physiotherapy days, but without the leisure of an entire day to ourselves). 

Ophelia prances around the apartment, and James and I collapse into bed to sleep the day away. I've become entirely unproductive around the house. My chores take several days to even reach a point of consideration, but it is completely worth a long afternoon sleep with my husband. Nights are long in his absence. We both have been missing the company of a warm body at night (for snuggling purposes, of course). These afternoon naps have become a dream to look forward to on sleepless nights. 

We both find our spirits are lifted by these hours home together. There is no ambition to do anything more than simply be together. The hardest part of the day is returning to the hospital, and once again, leaving James for the night.

James is slowly re-gaining weight with a little more solids each day to eat. He is also rebuilding his strength. He is able to walk further distances, and be active and awake for longer periods of time. These are incredible feats for a man with twelve percent lung function. There are limitations to his energy, because of weakness and faitgue, but there is always motivation to keep pushing through the breathlessness. It amazes me. I know, I know, I am always gushing with pride. It is hard not to be proud.

It has been a few weeks since I have written about gratitude. With that, I am grateful (in no particular order, and certainly, a non-exclusive list):
I am grateful for access to universal health care.
I am grateful for access to and availability of healthy food and clean water.
I am grateful for a warm and safe shelter.
I am grateful for the small comforts of home. 
I am grateful for Ophelia (my feline companion).
I am grateful for the ability to experience and feel happiness.
I am grateful for the ability to experience and feel love.
I am grateful for strength and motivation (both my own, and James' enduring fight to survive).
I am grateful for friendships (and the embrace and support of the transplant and Cystic Fibrosis communities).
I am grateful for James' organ donor and organ donor family. (James is 20 months post-transplant. We cherish each and every day that is possible because of this courageous and generous act of organ donation).
I am grateful for James.
I am grateful for gratitude. 


  1. Adena I must say ,you are a beautiful writer.A person can almost feel your pain and your joy with just your words.Yes gratitude is a wonderful thing .You and James hang in there and keep the faith.xoxoxDonna

    1. Thank you, Donna. I have always loved writing, and I find it very cathartic. Lots of love to you. We are keeping the faith! xo.

  2. Adena - you wrote, "There are limitations to his energy, because of weakness and faitgue, but there is always motivation to keep pushing through the breathlessness."

    I think I know what his constant motivation is - I've been there, and am there, and hope to be there for a long, long time - I'm fairly certain his motivation is you.

    This is a beautiful post - your gratitude is easy to see. I remember waiting for my lungs - and I remember how good and safe it felt to just be with one another...

    I hope James gets his new lungs soon - and I hope your journey together, afterwards, is as amazing as mine has been with my princess... And I hope that 15 years from now you are still his motivation.

    Love, Steve

    1. Thank you Steve. I really appreciate you taking the time to leave a comment. James agrees with you, but I know I can't be his only reason. You are also an inspiration! 12 years post-transplant! That would be amazing. We can only hope! Thanks again. xo.

  3. I am grateful for you
    I am grateful for James
    I am grateful for the presence you are in our lives
    I am grateful for the patience and persistence you and James embody
    I am grateful to be inspired by you, wise beyond your years!

    1. Pamela, I am grateful for YOU. Thank you. love. love. love.