“He fuses different songs together,” she explained. “Now we’re going to keep working on it as a team. He shows me with his eyes where he wants me to tap on the keypad.”
It was heartbreaking and beautiful that this was how he would continue with his dreams. I wondered if he looked at me and thought that I had better do something good with my life. If that’s what he was capable of, as limited as he was, then my avenues were wide open.
“I’m so sorry. I wish I were the one lying in that bed and you were the one here in the wheelchair,” I said, like an idiot. I was just saying things before my brain even had time to process what was coming out.
I’m making it worse. Stop talking! What is wrong with me?
Words kept tumbling out anyway, though, and when I finally managed to ground myself to a blubbering halt, his mother gave me a big hug. Then she looked at his eyes and told me, “He wants to play a song for you.”
A beautiful instrumental song rang out into the room.
I asked if we could continue to be in touch and visit them again, and his mother said, “Of course.”
We would see each other in physical therapy after that, and a few days later, I visited his room again. His mother looked at his eyes and then told me with some excitement, “I think he wants you to know that he can move his finger now.”
Sean wheeled me to the other side of the bed so I could see. I wrapped my finger around his and said, “I’m so glad that you can move your finger.”
He got to the point where he had some mobility in his arms and legs, but he still didn’t speak. Then one day they determined that he had plateaued, so he was discharged. I never got to say goodbye or find out his contact information, and the hospital staff wasn’t allowed to tell us.
“If they ever come back, please let them know I’d like to see them again,” I told a nurse.
“Will do.”
There were moments with other patients, too. We’d meet up in the hallway somewhere because we were each trying to wheel ourselves as far as we could go, and we’d get tired and have to stop. I’d get into random conversations with another person twenty feet in front of me just because we were both there and both fighting that same battle. Soon we were both crying and a nurse would come up behind one of us to say, “You’re okay!” and wheel us in the right direction. We’d wave to each other and that would be the end of our moment. But we were each stepping-stones for one another at that point in our lives; sweet temporary relationships based on an undercover code of compassion you’d see in a moment of eye contact or a sad smile.
I became less humiliated about the fact that I still couldn’t get all the right blocks in the right holes in physical therapy, and more connected to the other people around me who were also grimacing while trying to figure out their blocks. There was so much unspoken language. I wonder if this is how babies communicate, I thought. Just gut-level perceptions, just pure emotion.
Meanwhile, my communities in both Connecticut and Vermont were coming together for me in a big way. One of my youth center kids, Autumn, put together a silent auction fundraiser for me as soon as she heard about the trauma. She would later tell me that she never pictured herself as someone who could organize an event, but that she used the skills I taught her when I organized things for the kids. She and another youth center friend, Val, found a local restaurant willing to host the event for free, and they raised more than $3,000 to help Sean and me with our expenses. My cousin Wayne set up an online fundraising account for friends and family to chip in, too. We used the first of it toward rent, which we’d been unable to pay that month.
Sean’s friends had talked to him about finding a lawyer while I was still in the coma. We’d had one meeting with an attorney since I was moved to Gaylord, but I just wasn’t able to focus much mental attention on it. Thinking about what had been done to me only brought me deep sadness and panic all over again. It tore away at my sense of humanity to remember that the driver had tried to leave.
My caseworker at Gaylord, Debbie, tirelessly advocated for me and was able to get my COBRA health insurance plan extended for another six months, after which time I could transition to paying for private health insurance. It would be expensive—the private plan would be about $1,800 a month—but an attorney could help me navigate how to get loans to cover my bills for the time being. I would have been in a blind panic if I had known then the magnitude of my expenses to come.
Although we were told that the insurer for the driver’s company would have to pay a settlement for what he had done to me, we didn’t know how it would eventually shake out—would it cover all of my medical expenses? Would it cover lost income and anything beyond the basics? The process was going to be lengthy and we had no way to predict what to expect. In the meantime, even with health insurance, we understood that the bills were going to be astronomical.
It didn’t take long to confirm our fears; the first hospital bill arrived a few days later. It was for just the first three days at Yale: $632,576. Poor insurance company. Poor us.
I tried to focus every day on finding hope wherever I could grasp it. Each day when the nurses cleaned my wounds, they would measure the holes. I began paying attention to what they were saying. One day, they announced that a wound on my hip had closed half a centimeter compared to the week earlier. I started the calculations in my head: If it took one week to close half a centimeter, then how long will it take to close the whole thing? Let’s see…there’s a 2.5-inch hole in this section…and I would begin mapping out my recovery.
Whatever was expected, I wanted to be a healing overachiever. I wanted those wounds closed, and I wanted them closed now. But I tried to focus on a Ralph Waldo Emerson quote I loved: “Adopt the pace of nature: her secret is patience.”
On November 23, I took my first step on a mock set of stairs. One step, and it hurt to lift my leg like that, but I did it. As the days went on, I took more and more steps using my walker. When someone told me I would be able to walk across the entire physical therapy room before long, it sounded insurmountable—but then I started being able to envision it. I was my very own Little Engine That Could.
I knew it was unlikely for me to ever get back to where I was before, but I refused to accept that I wasn’t ever going to be me again. Being an athlete was a big part of who I was. So one way or another, I was still going to be an athlete. Hard to picture at the moment, when I was still dependent on other people to give me sponge baths, but I began focusing on the thought. Emotion without action is irrelevant. I will get back to who I am someday.
Toward that end, Sean and the nurses began wheeling me outside when possible. I remember the first time Sean brought me out to the garden, because the light was so bright that it stung—I felt like a vampire. I hadn’t seen the sun directly in so long that it was a shocking adjustment. I was intimidated by the feeling and couldn’t stay outside too long because I started to panic. I felt exposed. The next time, Sean put sunglasses and a hat on me. It still took a few times before I felt comfortable going out to the garden, even though it was a protected little alcove in the middle of the building complex.
What I really wanted more than anything was to hug my husband again. Not from a lying position or with him bending over to my wheelchair; I wanted to stand up and embrace him fully, with our arms wrapped around each other’s backs. I asked the nurses to help me make this happen.
They had to stand behind me to support me and prop the wheelchair against my legs for balance, but we accomplished it. It was the best hug of my lifetime.
On Thanksgiving, Sean brought me down to the conference room to see my family. It hurt immensely to sit on my wound, so I hated being wheeled around—not to mention, I hated having to be so dependent in general—but I was so happy to be with them. I just hoped I would be able to eat something and that I’d withstand sitting down for a decent amount of time with them. When we arrived, my parents, brother Shawn and sister-in-law Kaori, and their two sons were sitting around a beaut
ifully decorated table with a home-cooked dinner.
We prayed together while my wound vac ticked away noisily in the background. It felt so good to be part of a family gathering that wasn’t just about my broken body. It felt good to see that my squirmy little nephew hadn’t changed, and that my parents could still find reasons to laugh.
I wanted to believe it would be calm seas after that, but of course it wasn’t. Healing from trauma almost never is. There would be more infections, though thankfully nothing that got out of control. There would be a day when my colostomy wouldn’t stay sealed and Sean would spend two hours with wet gauze and gentle forehead kisses trying to work every piece of tape off my raw wounds so that the nurses could come clean it out and try again.
“Remember, love, we are doing this together, and this is temporal,” he said. “You are beautiful.”
There would be more times that I would break down and have to remind myself again that it was not time to give up. Sometimes my friends had to remind me, too. Mostly, I kept repeating my new mantra to myself about taking action—and one of my first actions was to write a thank-you note to Jody Williams for helping me to turn my thoughts around.
Then, in a flash of inspiration, I hit my call button and asked the nurse to put me through to the hospital’s PR department.
“The…PR department?”
“Yes.”
“Can I ask why?”
“Because I want to organize a bike tour fundraiser.”
“Um…okay.”
“I know what you’re thinking. But I know how to raise money, and I know how to do a bike tour. I did one for the kids at my youth center and we got seventy-five participants. So can you connect me with the PR department?”
They did. Tara, the vice president of public relations, came to my room. I explained how exercise had always been therapeutic to me, even though I was unable to exercise now.
“I need something to do right now to get out of my depression, and I want to help people find an outlet for their depression and frustration, too,” I said. I told her about how much I loved to bike, especially, and how I had read a flyer on the bulletin board about Gaylord’s adaptive sports program. I knew that they provided adaptive bikes for athletes with various types of traumas and disabilities, and I hoped to one day be able to ride again. I knew I would be scared out of my mind, but I also knew I had to do it. Biking was healing to me.
With my injuries, I understood I’d probably never ride a normal bike. There were a few people in my life who used adaptive technology, though. A longtime friend of mine had been born missing a bone in her leg and used a prosthetic. She was a serious athlete—a snowboarder and swim instructor. I had learned a lot about adaptive sports from her and knew that people could do amazing things with the right tools and training.
“I’d like to help raise money for the sports program. We can bike along a canal trail and charge people a set fee to participate,” I said. “What do you think? Will you help me help others?”
“Of course,” she said. “Tell me what you need us to do to support you.”
“I don’t have the connections here that I had in Vermont. I need you to point me in the direction of people who can help.”
That meant media, bike shops, law enforcement to monitor for safety, anyone on the board of trustees for the canal bike trail, possible sponsors for food donations, and so on. I was more than willing to make the phone calls because I didn’t have a whole lot else to do, but I wanted a starting point and the credibility of being able to say I was “officially” working with Gaylord on the event.
Even though it was an act of charity, it was not wholly selfless. Every time I had ever helped others, it came back to me tenfold. It’s powerful to spend your time in service of others.
Gaylord’s adaptive sports program was called the Sports Association of Gaylord Hospital. It’s pretty common for rehab hospitals to have programs like this to integrate sports into rehab therapy and to help patients continue to be active after they get back into the community. The program manager came to speak with me about logistics. It turned out that they did have a shortage of bikes because of the cost: Each bike ran about $2,000. I decided my goal would be to raise $8,000—enough to fund four new bikes.
It felt fitting to plan it around the one-year anniversary of my trauma, October 8. That would give me almost ten months to make all the connections I needed to get the event planned and publicized. The only condition I asked was that anyone who had any kind of physical or psychological need to use the bikes could.
Whether or not I would actually participate in the bike tour was a very big question. I hoped that setting it that far in the future allowed for the possibility, but I knew it was still a long shot. Either way, it kept me involved with the world I wanted to be in.
It was wonderful to have something to do again…something to plan and care about. The next time that nurse asked me, “What’s your goal for today?” I was going to have an answer. The sun was going to come up again.
Chapter 12
You’ve Got to Be Kidding Me
YOU HAVE TO LET me go home by Christmas,” I begged my caseworker. My depression was mounting; I couldn’t listen to patients groan or handle the smells of hospital waste much longer.
“About forty percent of your body is still open wounds. I think that’s too soon,” she said. They wanted me to stay in the facility at least another month.
“I don’t. I need to be home. Sean knows how to do the wound changes and I can have nursing care at home as often as I need it.”
“We’ll see” was all she would promise.
I had a good feeling about it, though. I knew from what all the doctors and nurses were telling me that I was healing much faster than expected and with few complications. Especially considering that I had an autoimmune disorder and a previous brain surgery, it was truly remarkable, and I was just starting to appreciate it.
Then came the day that my therapist Robyn had promised would happen: In the physical therapy room, she stood behind me holding my wound vac in one hand, my catheter bag in her pocket, and my heart rate monitor in her other pocket, and managed to maintain my wheelchair as my safety net as I slowly inched step by step across the floor with my walker. I could barely look up to see the progress; I was just so focused on not passing out. My back wounds seeped from underneath my dressings onto the floor and my head started to tingle with weakness. Down I went, back into my wheelchair. A blood pressure cuff was quickly wrapped around my arm and I heard a tender voice saying, “You did it, Colleen…It’s okay, we got you. You did it…all the way across the room!”
I slept the remainder of the day, with the exception of wound changes, and I dreamed of running. The funny part was that I didn’t even like running. I looked at it as a means to an end; I was a cyclist who wanted to do triathlons, so I had to run. But now that I couldn’t, I fantasized about it all the time. Someday I was going to run again.
Less than a week before Christmas, I got a terrific surprise: my discharge papers.
The papers listed my diagnosis and follow-up instructions. The space for “primary diagnosis” ran a little long:
Degloving injury to left thigh from labia majora to left knee
Multiple pelvic fractures
Rectal injury
Sacrospinous injury
Extensive soft tissue hematoma
Acute blood loss anemia
Electrolyte imbalance
Ventilator-acquired pneumonia
Metabolic acidosis
It was quite a list, and yet I was standing. Many people on my medical team told me that if I hadn’t been a conditioned athlete, my heart would never have withstood the multiple cardiac arrests and surgeries afterward. I had defied the odds.
That day, I stood in front of the bathroom mirror with my walker and brushed my own hair and teeth and looked at myself. I was so excited and scared at the same time. My safety net was disappearing, and I knew I was pushing it to leav
e so soon. Despite my reservations, I just had to be home for Christmas.
Sean helped me put my jacket on and threaded my wound vac through my pants. There was nothing left to be done. It was time.
I had entered the facility on a stretcher; I wanted to walk out. With a walker, of course. Sean took a picture of me beaming while holding on to the sides of that walker for dear life. It was my victory lap. Nurse Lori, one of my favorite nurses and the one who I trusted with the most delicate parts of my recovery because of her patience and compassion, followed behind me with a wheelchair as I made my way out of the room and down the hall. Some of my other nurses lined the hallway with tears in their eyes and applauded as I passed by. How could I ever thank them enough for all they’d done for me? For their expertise, of course, but also for their caring.
I took two breaks on my way to the door, but I made it all the way without needing the wheelchair. It was nighttime. I had asked to leave in the dark because daylight felt too overwhelming. I hadn’t been out of a medical facility since the fall; now it was winter, and I was not sure about how I was going to adjust to the stimuli of the outside world. I was terrified of the ride home. I didn’t want to be in a car, and more specifically, I didn’t want to be near any other cars. The thought of having to be on the road with lots of cars around us was terrifying.
Even though I had practiced being around a prop car in the physical therapy department and even worked with the therapists to try to get in and out of a car, you never realize just how difficult it is to get into a car until you can barely sit by yourself in an upright position.
I was heavily medicated with antianxiety and pain pills for the trip, and Lori and Sean helped to get me situated in the passenger seat. I held Lori for a long time and cried and thanked her before she closed the door and sent us on our way.
Gratitude in Motion Page 12