It was a dreary, drizzly spring day and my surgeon walked into my hospital room, a bit agitated, and asked me gruffly, “What is it you want? Why are you going through this?”
I don’t blame him for being irritated with me. Earlier that day, I had decided I was done, that I would never recover. How could I? I couldn’t even hold up my waning 83-pound, 5’8″ frail frame on my own two feet. Nurses had to come in and lift me out of bed to use the commode in my shared hospital room; it was humiliating. When I tried to stand or push myself up, my muscles just shook; nothing lifted or moved, just vibrated. After a few seconds I would stop trying to move and pressed nurses button.
Throughout my entire life I had been an active person, whether it was running, biking, lifting weights, going to the gym, and now I was incapable of moving my own body. It was depressing.
In addition, I had two tubes the size of garden hoses in my stomach meant to drain my remaining digestive “system,” which consisted of a stomach and less than an inch of intestine. My abdomen also housed two drains used to remove fluid building in my abdominal cavity. How could things go back to normal after this? I no longer felt human.
Over the last two weeks, I had major surgery to remove my intestines, and endured heart and respiratory failure which culminated in a week in the Cardiac ICU. I didn’t remember much of this traumatic event, the drugs were doing their job. My surgeon wanted to know what I wanted out of all of this? I wanted it all to stop, for it to be over, for no more pain, no more frustration, no more feeling like a freak of nature.
But that is not what I said. I instead replied angrily, “You know what I want? I want to go home to Chicago. I want to enjoy the city. I want to wake up in the morning and go to work. I want to come home and spend time on the couch with my husband and my dog. That is what I want every day. I want to be normal; I want to have a boring routine normal life.”
He smiled a great big smile, one that I’ll never forget, and said, “Then that is what we are going to do. And when you achieve that, I’ll come and visit you in Chicago at your office and we will have coffee.”
For the days and weeks to come when I was lying there wanting to give up on the excruciating rehabilitation process, he reminded me that we were going to meet in Chicago at my office for coffee. He always knew just the right time to stop by and remind me of our goal, at a moment I was about to quit some task that was too hard.
Thanks to that goal, I didn’t give up. After two months, I was wheeled out of the hospital and went to my home away from home, Transplant House of Cleveland. I began to walk short distances outside that eventually got longer. I spent afternoons watching the passersby on our porch, envious that they seemed to take going to work for granted. I began cooking again, at first for others, and as my diet increased for myself too. I re-kindled my love for pizza, butternut squash, and cheeseburgers. I learned a lot about the transplant process. I gained weight on my IV nutrition. Day-by-day, week-by-week, I did more and more until I was the one visiting my friends and other patients in the hospital, giving them hope of a life outside of those white walls.
Music is and always has been an important part of my life and my recoveries. I distinctly remember lying on my bed at the Transplant House and hearing “Peace of Mind” by Above and Beyond come on and I felt in heart the meaning of these lyrics:
I lost all the riches
The diamonds in the mine
It turns out that this was the best thing
To ever happen to me
Errors and glitches
And what a way to find
That such hurt can bring you a greater piece of mind
If you’ve ever lost every part of yourself
If you’ve left your heart on a lonely avenue
It will be only a matter of time
Before your life comes through for you.
Finally, I had an epiphany that my life was great and my health stable enough that transplant no longer made sense for me. My family and close friends were hesitant, concerned for my health. But every single member of my medical team agreed, transplant at this point in my life was riskier then living with no intestine, dependent on IV for hydration and nutrition.
I was still a whisper of what I once was, but I was good enough to make the call to go Status 7, meaning I could place my transplant on hold. The risks of transplant, living immune-compromised, and the effects of immunosuppressants no longer stacked up for me.
Eleven months after leaving the hospital, we packed up the U-Haul and I moved back home to Chicago. When I got home, I spent extended periods of time staring out my window at the bustling city. It was amazing how much had changed since I had been gone. I began getting reacquainted with my city and my friends. Life went on when my life seemed to stand still. It was hard work getting up to speed and building the stamina that city life demands. Chicago consumed my efforts for a few months, and eventually it felt like my city again.
Eight months after moving home, I started back at work part-time. After much contemplation, a couple of false starts, and many conversations, it was time to take that step. Going back to work had all kinds of implications. There was a need for a stricter work-life balance than my life had ever demanded. I needed to listen very closely to my body and to heed its message. I also needed to redefine my role in the office. Luckily, we all agreed it would be an on-going process of testing and adjusting to find the right balance. We did it!! We reached our goal.
After having been back at work, I surprised myself; I am capable of much more than I imagined. My fears of being out of touch and obsolete, or incapable of contributing in a meaningful way have all vanished. The energy, love, and support I feel every time I walk into the office is phenomenal. The challenges are precious, and I thrive on them just like I used to. So much has changed and yet so much is exactly the same.
Every day I feel incredibly lucky I get to hop on the bus to commute to a job I love with people who challenge me and support me in ways I cannot describe. During my commute home, I cannot wait to see my dog’s floppy ears and the smile on my husband’s face as we relax at the end of the day looking out over the city. Things that would have gone unnoticed in my busy past are now the only things I can see.
When I say we did it, I mean WE. This would have never been possible without the love and support of so many people, in so many places and at so many times that I cannot begin to even say thank you to all of you.
My dream has come true in ways that I could not have known. I have my normal life back. It wouldn’t be normal to most people, but it is amazingly normal to me. For that, I face every day with gratitude. Everyday, mundane things like riding the bus, going to work, cooking and eating dinner, and walking the dog are amazing gifts for which I will be eternally grateful.
As we open the next chapter, it is my hope that my story can help others hold onto hope when it is only a thread. Although everyone’s path is different, as humans, we must care for the sick, bolster the depressed, help the struggling, and above all, love with gratitude.
Onward and Upward!