Last year

My motivation to blog has been limited lately. I think this is related to an on-going preoccupation with what my life was like last year at this time and a conscious effort to appreciate my current freedom (relatively speaking) and soak up the holiday season for all that it is and can be. Precisely one year ago, I was being tranferred from the ICU of a major Twin Cities hospital to the vent-users wing of a rehab hospital. I was a quarter of the way into my 4-month hospital stay.

Besides all the frightening aspects of my medical condition at the time, this move to a rehab institution was a terrifying change because I was leaving behind every medical professional who knew specific details about my care that aided in comfort and minimized pain. I was gambling in my choice among several local rehab institutions I knew very little about. I was counting on all medical records being tranferred with accurate information intact. And, I was leaving a fantastic and motivating physical therapist for unknown replacements whom I worried could never compare to the woman I'd been seeing daily.

I ended up at a great institution full of compassionate, dedicated and very humane people. I was brought there in an ambulance by some guys who could easily start their own comedy act. The broken hospital bed I was put in was quickly replaced with a better one, and my rehab began again. Looking back, things went remarkably well, though there are the inevitable -- and important -- gripes I have with aspects of institutional care. I've blogged about some stuff and I'll blog about more yet.

But what's most on my mind these past weeks are the people, the specific individuals I relied upon at these institutions to literally keep me breathing. When I think back, I'm overwhelmed with gratitude for their kindnesses and awareness of me as an individual lying in that bed.

There was my primary doctor at the local hospital who announced to her colleagues within my hearing that whatever came next was entirely up to me because I was "in charge" -- a declaration that no disabled person afraid of losing her autonomy in a medical emergency can take for granted.

There was the student doctor in ICU who took the time to soothe my concerns about possible interactions between painkillers and my neuromuscular disease.

There was the respiratory therapist who gambled wrongly about my ability to breathe on my own, yet returned to my bedside after the trauma of reintubation to cheer me on for whatever came next.

There was the respiratory therapist I recall through a mid-night narcotic haze because he skillfully eased my breathing like noone else could. When I was still panicky and gasping despite a clearer windpipe, he noted with quiet humor that I could "just breathe" if I only tried.

There's the nurse who gave me courage on one of my darkest days by whispering in my ear to not give up.

There's the nurse who noted I enjoyed All My Children and put a note on my wall encouraging anyone around at noon on weekdays to tune my TV in. Maybe it seems silly, but it was a comforting routine amidst the pain and helped insure one small desire of mine was noted every day.

There's the busy doctor who bought me an audio book of Zora Neale Hurston's Their Eyes Were Watching God so I would have an activity while lying endlessly in bed.

There's the IV nurse who worked on replacing my PICC line (I had five in four weeks) while I lay there and leaked nonstop tears. Before he left he silently wiped my eyes with a compassion that makes me want to weep remembering it.

There's the young nurse who cheerfully called out "Good job, Kay!" everytime she helped me off a successfully-used commode or bedpan.

There's the nurse who checked in on me one evening even though I wasn't her patient in order to ensure that I'd gotten my weekly shampoo.

There's the male nurses' assistants that helped me with the most intimate tasks while maintaining a respect for my modesty and humanity -- not just toileting, but bathing, hairwashing, eating, and lying comfortably.

There's the nurses' assistant who couldn't find my Pizza Goldfish so he surprised me with some other munchies from some vending machine.

There's the nurse who made a point of dropping by with her big floppy puppy over the weekend.

There's the recreational therapist who saw the morning staff were very busy and hung around to feed me breakfast when I still needed the help.

There's the nurses' assistant who shared with me the concerns for her young learning disabled son.

There's the nurse who never once mentioned that her young son was very sick with cancer.

There's the respiratory therapist who automatically knew and understood my desire to learn about all the equipment I use. He'd explained a new humidifier on the vent to my parents while I'd still been in bed and unable to see what he talked about, but he made a point of coming back to it when I was up in my chair.

There's the doctor who kept popping into my room to watch and share the finals of the women's Olympic figure skating competition with me. We rated the costumes and the skating together.

There's the nurse who bought me a little squooshy pillow which I still use every night.

There's the chaplain who gave spiritual comfort by reading poems from one of my books to me. She was at ease with the speechless vent-user and good at sharing a laugh with my parents too.

There are three people I didn't like very much who each greatly humbled me by saying they would miss me greatly when I went home because of my character and personality.

There's the housekeeping guy who unwittingly made me laugh every day with his singleminded thoroughness in dusting the clock and picture frames.

There's the person who called me friend and trusted me with personal news no colleagues knew.

There's the therapy assistant who helped me exercise my limbs while we chuckled through each morning episode of King of the Hill.

There's the respiratory therapist who saw my postcards and we discussed a mutual desire to visit Barcelona, Spain for the incredible architecture.

There's the student nurse for whom I was the very first patient and her gracious way of asking for input to help her serve me and learn worried but touched me.

There's the newly graduated nurse whose error resulting in my trach being pulled completely out has provided me with endless confidence at home because I experienced that emergency under the safe care of the respiratory staff and, thus, learned for myself about worse case scenarios and that I can handle them without panicking.

There are the many people who have immigrated from far away countries and shared stories of their homelands, cultures, ethnic foods, and personal immigration struggles that continue to impress and inspire me.

There's the nurses' assistant who gave me a photo of her youngest daughter -- that child easily wins the award for baby with the chubbiest and most tweakable cheeks ever seen.

There's the social worker who provided excellent family support when the insurance company was trying to institutionalize me in a nursing home.

There are the people who became my friends and I meant to email or meet with more often, but found I missed all of the above professionals so desperately when I went home that I needed to be strong and focus on my life and recognize that I'd hopefully never see them in rehab on a daily basis again.

I haven't mentioned anybody more than once above and I haven't mentioned dozens of other folks who touched me as well. I hope they are all healthy and well and I hope others who must spend the holiday season alone in a hospital bed -- in ICU, rehab, nursing home or any institution -- receive as much compassion and companionship from the professionals who care for them.