When my anxiety spiked, I would sometimes hear a soothing voice in my mind, and it took me a while to realize whose it was: It belonged to Susan, the friend who had showed up and read poetry to me the whole time I was in a coma. I have no memory of her doing so, and yet my soul connected her voice to comfort in times of stress.
The next day I stood before the mirror giving myself a sponge bath. Tears welled in my throat at the sight of my naked body, already so disfigured, now bandaged up in four new places where there would be four new incision scars. I stared at my cane handle and my bandages and I remembered to be thankful again, for the surgical team, the nurses, Sean, my friends and family, and for my own imperfect yet still functional body.
“Thanks for sticking it out, Clyde. You’re in the best temple I can give you. I’ll take you and Bonnie for a run in the sun someday soon, I promise.”
It was supposed to be six weeks of no exercise. I started trying to run again at four weeks.
“I don’t even want you walking your dogs for another two weeks,” the surgeon said. “Most people would still be lying around on painkillers right now.”
“I’ve done a lot of that in my life. I’m pretty sick of it.”
“Nothing more than walking for two more weeks. Got it?”
“Fine.”
I had a 5K scheduled the following week. I promised to walk it instead.
Don’t tell him I wogged.
Chapter 18
Three Trials
THE YEAR 2014 BROUGHT three very different types of trials into my life, beginning with the case against the freight truck company.
I had been electric with emotion before the first scheduled conference back in 2012, thinking I was about to face in court the man who had run me over. I had all kinds of thoughts bouncing around—wanting to feel compassion, but also knowing that he had not once reached out to apologize or check in on me. On the scene, he had lied to the police and said the crash was my fault. The next day he apologized to the police and said that he had seen me, but he couldn’t stop in time. As a result, he got an infraction for failure to yield to a pedestrian or cyclist.
That’s it.
He almost killed me and he tried to drive away. I ended up with years of surgeries, massive medical costs, a permanently broken body, PTSD, anxiety attacks, an inability to have a baby, an inability to make love with my husband…and he ended up with a ticket. No criminal charges.
We were still living on loans at that point, nervously praying that the settlement would be enough to cover them. The only positive development was Obamacare. Thanks to the Affordable Care Act, my insurance went from $1,800 a month to less than $400, and my deductible was cut in half, too. We would save $1,400 a month in loans.
Before that first meeting, I lost sleep over how I would feel looking into the driver’s eyes, wondering what he was going to be like, what I would learn about his background, what he would say to me (if anything). I had tried so many times in my mind to give him the benefit of the doubt; he was scared, he was shocked. I hoped he felt deep remorse not only for his careless driving, but also for trying to flee the scene afterward. I worked to pull myself together and face him.
But he wasn’t there.
He wasn’t at any of the other conferences, either. I knew that he would eventually have to show up for questioning, but I had no idea of the timetable; my attorney had warned us that a case like this could drag on for two or more years.
Throughout 2014, I had an endless stream of legal paperwork and many angst-filled meetings with my attorneys to prepare, and finally, the depositions began. The first one was of the only witness who had seen the entire thing: David Smith, the construction worker who had been on his lunch break at the deli and was the first to rush to my side. I was not allowed to thank him, hug him, or even speak to him until the trial was over, but I was allowed to be in the room when he was deposed. I hoped that I would manage to convey my gratitude with my eyes.
Listening to him recount every detail he remembered was hard. He described how he wanted to make sure I would live, and that he tried to cover my body with a contractor’s tarp because my clothes had been ripped off. It was an honor to be in the same room with him, finally. Sean squeezed my hand as we listened to this man reveal the horrors of what he had seen—and what I had lived. Even though I remembered so much about the trauma, and even though I had told the story hundreds of times by then, there were still details that could take my breath away. I had known my trauma only from my own perspective. It was chilling hearing it from an onlooker’s point of view.
There were also fresh new sources of humiliation to come with the trial, such as when a photographer had to come take photos of all my scars and damaged parts…we had to show exactly what permanent effects I had, which meant the photographer would have to see my naked body and take the most intimate pictures for strangers to see and judge. I usually looked forward to photo sessions for magazines and newspapers; not this time.
While the trial was going on, I was trying to book as many speaking gigs as possible. I spoke at schools, races, blood drives, medical conferences, and community events. Bart Yasso of Runner’s World would introduce me when I spoke at the Gasparilla Distance Classic pre-race event, and then celebrate with me every time I crossed a finish line that weekend (four of them with my brother Erin and his family). It felt so good to be doing something positive for work again. I hadn’t felt settled into any kind of career path after the PeaceJam days, but I finally realized that I could make a real difference just by sharing my story.
Of course, public speaking is not an easy way to make a living, and we supplemented it with other things. Sean got trained to teach spin classes, and he started coaching on the weekends. We also sometimes spoke together. Matt Long, who had become a friend by then, told me, “Be patient. Before you know it, your calendar will be full.” As with everything else in life, though, I didn’t want to be patient. I wanted to be booked in every city, ahead of every race I ran or cycled.
June 2014 brought the next trial, though a different kind. My EMT Amanda, the one who had placed her hand over my heart, received wonderful and devastating news all at once. She and her husband, Chris, who were both firefighters and EMTs who often worked together, found out that they were going to have their first baby. Just a few days later, her legs gave out from under her as she was getting into a fire truck, just as she had done over and over before when answering emergency calls. Chris helped her up the steps, and they later went for a medical evaluation.
Pem McNerney called me in Colorado with the news the day after we finished the Boulder half Ironman.
“It looks like Amanda has ALS,” she said. “Lou Gehrig’s disease. Her mother and grandmother died of it, too.”
I didn’t know what to say besides, “Oh my God. I’ll ask everyone to pray for her.” My heart sank, as my cousin was afflicted with this disease and his muscles had already atrophied. Spencer was a master woodworker and incredibly talented artist. He also had a fearless heart for God and his family.
Amanda was not even thirty years old, and she knew that pregnancy could hasten her decline. ALS is an incurable degenerative disease that ends in death—there’s really no way to pretty it up. It’s just a matter of how long it takes, and in her case, they learned that she had the most aggressive form of the disease. Doctors would not reassure her that either she or her baby would live; it was unusual for babies to survive to term in this situation.
Amanda had lived her life knowing that she was at risk for this disease, but chose not to go for genetic testing earlier. Instead, she had made the decision to live the healthiest lifestyle she could—which included a vegetarian diet and running—and hope that she was in the 50 percent of children who would not inherit familial ALS.
Within weeks of her diagnosis, she had already lost most of the strength in her legs. I hadn’t called right away because I didn’t feel I had any right to intrude during such a difficult time. Once a week had passed, though, I wanted
to visit and let her know that I would be there for her as much as possible.
The first time I saw her, in early June, she was using a walker. The next time I visited, just a week later, she was in a wheelchair and using an oxygen mask as needed. The following time, she had lost use of her arms and the oxygen mask had to be strapped on. It was shocking to see this vibrant young woman declining so quickly. My cousin Spencer was already bedridden, so I knew the horror of how the disease would progress.
I fought back tears the first time I saw her, and she quickly corrected me. “There’s no room for sad energy here with this baby. We can only have positivity. I want this baby to only know joy and love.”
“I’m sorry,” I said, biting back my emotion.
“Even though my life is being taken away, God gave me this gift of life and I’m going to protect this peanut no matter what.”
“I know you’re going to be the best mother.”
“And when I pass, my life is going to be used to help solve the puzzle of this disease.”
I did what I knew best to do: I signed up for a half marathon as a fundraiser toward Amanda’s expenses and asked friends and family to donate. Their small house would have to be modified to open up doorways for her wheelchair to fit through, and she would need a wheelchair van, a Hoyer lift, a commode, and lots of medical equipment. Their medical bills were already soaring, but would eventually be outrageous. This couple who had been there for their community in so many ways now needed as much support as we could give.
“Thank you for putting your hand over my heart now,” Amanda wrote on my Facebook page.
I ran those 13.1 miles questioning myself and God, asking why I was saved from the brink of death while Amanda had a terminal disease. I prayed for total healing; I prayed for a miracle for both her and my cousin. My own healing had been a miracle, so why not two more? How does He decide who gets a miracle and who doesn’t? Why did I have so much guilt for surviving?
The community responded to Amanda’s need in an astounding way: After many fundraisers across the shoreline—everything from dinners to auctions to dance classes, bake sales, and car washes—the GoFundMe total reached over $350,000, enough to build Amanda and Chris an entirely new, accessible modular house with all the equipment they needed. Not only that, but contractors volunteered their time and businesses donated needed supplies.
After developing a high fever, I was treated for severe cellulitis (a bacterial skin infection) at Yale on July 24 and released with a prescription for antibiotics six times a day. It was a problem I would have to face for the rest of my life, but it was treatable. Amanda was admitted into the hospital two days later for the rest of her pregnancy so doctors could monitor her oxygen and protect the baby; her breathing was so labored that they had to perform a tracheotomy. After that, she couldn’t speak at all, and never would again. She learned to communicate using her eyes on a screen that would translate her letters into robotically spoken words in a female voice.
No matter what, she never lost her sense of humor and I never saw her cry. She had a cartoon photograph of Ursula from The Little Mermaid on her breathing machine, so she called it Ursula. Her unborn child—who they soon learned would be a girl—was nicknamed Peanut. Amanda talked very openly about the realities of her disease, but held out hope that she would be around to meet her baby and see her grow up for as long as possible. Of course, we all prayed for a cure to be discovered in time.
In August, the Bridgeport Bluefish baseball team did a big fundraiser for Amanda and Chris, and they invited me to throw the first pitch in her honor. I had never thrown a softball properly before, and I said to Amanda, “I don’t want to screw this up for you!”
Sean helped teach me how to throw a decent pitch over the next couple of weeks, and I got out there and did it, writing For Little Peanut on the ball in Sharpie and saving it for her afterward, figuring I would put it in a glass display case.
“She’s going to really appreciate that when she gets older,” Amanda told me.
Sean and I often went to visit Amanda together in the beginning, and we’d bring essential oils and massage her feet and hands, which were so stiff. She lost abilities one by one—a few fingers could still move for a while, but then they stopped. By the end, she was completely paralyzed.
She defied all expectations, though. She became one of the rare ALS patients to carry a baby to full term. Arabella was healthy and beautiful, and Amanda got to meet her baby and take her home. Amanda needed twenty-four-hour medical care, but she was able to be home with her husband and daughter instead of in a hospital. Not only that, but she survived for a year and a half beyond that point to see her little girl growing and developing a personality. During that time, Spencer passed away in his sleep, and our family mourned. It was terrible to know that this disease would claim both of them in such a short time span.
When I went to visit Amanda, I got to hold this beautiful baby—and ache for how unfair it all was. It hurt to know that Arabella would never hear her mother’s voice, or experience what an active and vibrant person Amanda had been. It hurt to think of such joy being mixed with such tragedy. I tried hard to respect Amanda’s wishes, though, and stay positive.
Let there be no room in my heart for sadness here, I prayed. Just fill me with love.
“I want you to meet a friend of mine, Karen,” Amanda told me one day. “You would love her—she’s crazy like you. She does Ironman events. She never stops.”
I did get to meet Karen at a triathlon in 2015. It was my first triathlon after another surgery, and I was in so much pain that I was puking on the side of the road…and that’s when Karen came bounding over to me, asking, “Are you Colleen?”
Mortifying. Yet she still decided to be my friend.
We agreed to do an ALS ride together for Amanda and Spencer, which happened so soon after Karen had given birth to a surrogate baby that she had to stop and pump her breasts all throughout the ride—and the mother would meet us to pick up the pumped milk along the trail! When we crossed the finish line together, we FaceTimed Amanda to celebrate with her. I wished I could FaceTime Spencer also, but I took comfort through the tears knowing he was no longer suffering, free from this disease and hopefully creating beautiful artwork in heaven.
As time went on, though, it became harder and harder for me to visit Amanda. I would hold on to her limp hand and pray that God would do something and allow her to squeeze back. I was on the verge of breaking down every time, and usually did in the car afterward. It was so emotionally draining that, I’m embarrassed to say, I began avoiding it. My plan was to visit her weekly, but I became too fearful to do it because I didn’t think I could hold it together the way she wanted me to. It was clear that she didn’t have much time left, but no one knew how she would go. Amanda had helped to save my life, and now I was powerless to do the same for her.
I never questioned God as much as I did during those times. Why would You do this? Why would You take away my ability to have a baby, and then allow Amanda to find out she was dying at the same time she found out she was having a baby? What kind of plan is this?
Spencer had been much older when he was diagnosed, and he’d had children and a beautiful, long life. ALS is ugly no matter the age of affliction, but this young? I wished I didn’t know what was ahead for her.
My days were so mixed with good and bad at that time. The final trial in 2014 was my own medical one: It was time at last for me to start the process of skin expanders so that my thin, tight skin could be removed and “good” skin could be sewn on in its place, to reduce the risk of infection and cancer and to allow me more freedom of movement. What that meant was that a surgeon would make incisions and place silicone balloons underneath the healthy areas of my skin in three places on my leg and hip, then fill the bags with saline slowly over the course of several months so that my skin would grow to accommodate it—like when skin stretches and grows during a pregnancy.
The initial surgery would take t
hree hours, then the expansion process would span about four months. During that time, I was advised, there could be “some discomfort” as the skin stretched. At the end, there would be a second surgery to remove the expanders, cut away the fragile “bad” skin, and reposition the healthy tissue over those areas.
I decided to try accomplishing one big goal before going for the initial surgery: I wanted to try running a full marathon.
Without telling people, I signed up for the Via Marathon sponsored by the Lehigh Valley Health Network. To my amazement, none other than Bart Yasso himself offered to let Sean and me stay at his house that weekend. How could I turn that down? I felt like I was in the presence of a legend, and it was so good to see up close just how much Bart cared about runners and running. When I realized, much to my chagrin, that I hadn’t packed socks, Bart rummaged through his drawers to find a pair that would fit me. They must have been lucky socks, because I finished that marathon.
I came in nearly dead last, and I had pain, bathroom issues, and tears along the way, but I finished—all 26.2 miles, as Sean situated himself along the route to cheer and scream for me every four to six miles. I couldn’t stop crying afterward.
Then I turned myself over to my doctors.
Amanda was in the hospital being monitored a few floors below me when the three expanders were implanted into my body. There were complications from the surgery (I had a lot of blood loss and a major hematoma on my hip), but I was discharged two days later with strict instructions not to walk or put any weight on my legs for the next several months, with exceptions for going to the bathroom or other brief movements in the house using a walker. I was to use a wheelchair at all times outside the house. I would come back to Yale weekly at first, and then twice a week, to fill the expanders with saline in the three ports.
My dogs were also not allowed to jump on me or cuddle me in bed, which was so confusing for them and sad for me. I asked my friends to please come walk the dogs for me, since I wasn’t allowed to anymore and Sean worked during the day. People were again willing to come watch over me and bring me meals, but I just needed to be solo for a while; I was in pain and made bad company. I knew the surgery was an important step, though, so I kept my head high about it.
Gratitude in Motion Page 21