23 Nov 2017

My husband was felled by Guillain-Barré Syndrome on October 19, going from yoga class on Wednesday night to the ICU on Thursday night. Fortunately, the paralysis stopped short of the muscles that work his breathing. Once diagnosed, he received a daily infusion of immune globulin for 5 days in ICU; then he was transferred to a rehabilitation facility. His recovery has been miraculous, and today, 5 weeks later, he is walking independently for short distances, using a walker for longer ones, and gaining in endurance and strength every day.

The world can change in an instant; ours did, in every way. I’ve been able to sleep with him most nights, in both the ICU and in the rehabilitation hospital. Hospital room 153-2 has been turned into a college dormitory room, with a mini-fridge, a cappuccino machine, a humidifier, a diffuser, a fan, and posters on the walls. Our daughter made collages of photographs of bright and happy times with family and friends, to remind him of their love and to inspire him for the future. He will recover completely, although it will take too long.

My pattern for the past few weeks has been to be home briefly to do laundry and some chores, to go to work, and to walk to the hospital. Being so close makes life a bit easier. I load up my backpack, walk a mile, and take the elevator to the first floor and go to my new home away from home, where he now lives.

The elevator is a new world, where conversation with strangers comes easily, and is refreshingly honest and open. We are united in our journeys to visit a loved one. We talk about how things are going. There is always gratitude; our loved ones are alive, they are getting better, and we all know how precious is life. These little bits of celebration are oases in the desert of fright, hard work, and uncertainty.

I, a severely introverted person, am happy and surprised at the ease of reaching out to others and finding comfort in their reaching back.

Today is the most heartfelt Thanksgiving I can imagine with all our children and their mates coming from far away to stay with us and be together, eating good food, laughing, maybe playing some music or watching our favorite TV show together. The best things in life are priceless. I am grateful.

Happy Thanksgiving to everyone.


5 Responses to Elevator gratitude
  1. Oh, Nikki, I know the scarey journey you and your Honey Rafe are on. Treasure each moment. Jim is my miracle. He doesnt realize the terror he gave me. He gets reminded many times when he tries to extend himself. Glad to hear Rafe is making progress. I know you will advocate for him. May you have a wonderous Thanksgiving. Takecare of yourself. Sleep hydrate and eat. Keep a journal, take photos of his progress. Play your neautiful music to help him heal.

  2. Hey Nikki — Have been out of the loop and had no idea this happened to Rafe and to your family. Wow. I just can’t imagine how frightening and challenging this has been for you all. But so glad to hear full recovery is going to happen. Sending hugs and hope and lots of love your way. SueEllen

  3. I’m so sorry this has happened but so grateful his respond se to treatment has been so good


Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.