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Chapter One
An Ironic Diagnosis
I could feel the gadolinium contrast pushing through my vein. A wave of warmth rushed up my arm, and then through my entire body. I knew my face was flushed. Then, as they slid me back into the MRI machine, nausea hit, and then the panic. "There is no room to sit up. I am going to throw up and choke on my own vomit." My head was in a plastic cage snapped tightly shut, my arms were down by my side, and the machine started to shake and sounded like ten thousand jackhammers. I hadn't let myself get really scared until now. For months, I'd been fighting vertigo, fatigue, and other symptoms, chalking it all up to stress and an ear infection. I was training for the Harmon's MS 150, a cycling event in Salt Lake City, in the spring of 2006. I was going to our local recreation center for indoor training sessions because it was still too cold to ride outdoors.
I didn't know much about multiple sclerosis, but my boss had it. I worked for a publishing company and the owner was in a wheelchair. When I first started working for him, I didn't know what was wrong with him and I was too intimidated to ask. Even though he was in a wheelchair, he was a powerhouse. He was committed to his company and enjoyed the stressful nature of the business, and made it more stressful whenever he could. Eventually, I found John's softer side. I had great respect for him and his wife even though we couldn't be more different. That stress they thrived on twisted me up. Once I got to know them better and had been with the company for almost two years, I decided to raise money for MS research by participating in the 150-kilometer ride. I wasn't sure if I'd ride the whole thing but I was looking forward to trying. I wanted to raise money for MS research, but I was really riding for John, for his softer side.
It was a stressful spring, and there were several events that likely triggered the exacerbation that led to my diagnosis. I was working long hours and had volunteered to chair the annual auction at my daughter's school. I took a little detour from my cycling training and went to visit my sister, who lived in Germany. I was so excited to see her, my brother-in-law, and my niece and nephew. We didn't see each other very often because we were an ocean apart, but we talked almost every day or exchanged messages. We weren't always the best of friends when we were kids, but we get closer and closer year after year. Bailey, Mark, and I went together and we had a blast. Between afternoon prosecco toasts celebrating our reunion and late nights, though, I completely stressed out my already stressed-out body. Add work deadlines and jet lag, and it's no wonder that I didn't feel well when I got back. My grandfather died that spring too. Research shows stress can cause MS relapses or episodes. I was just getting by in the craziness of my life, just making ends meet, just barely handling it. On the outside, it looked like balance. On the inside, it felt like hell. Losing my grandfather tipped the scales.
When my grandfather died, he was living in an AlzheimerÕs facility. It was always hard to visit him because he always remembered me, but couldnÕt really remember why he was there, why he didnÕt have his driverÕs license, and why his life was gone, but he was still here. On the day he died, I spent most of the day with him. His eyes were closed and he was lying down, but he wasnÕt peaceful. He was agitated, frustrated, restless. Pissed, really. Not completely lucid, but feisty and verbal. Some things never change. He kept raising his arms up and saying ÒLift me up, pull me up,Ó over and over again. IÕd lift him up and fluff his pillow and heÕd start all over again. I could not make him comfortable. IÕve lost people before. Friends, my grandmother, other more distant relatives, but IÕve never been with them when they left. It wasnÕt the peaceful passing I had heard about. It was volatile and awful.
For months I had nightmares about my grandfather yelling at me, "Lift me up, pull me up!" Those words and moments haunted me. About six months after he died, I asked a minister at my church to meet me for coffee so I could tell her how mad I was that God let my grandfather die like that and I couldn't help him. I couldn't ease his pain. I repeated the words. I said, "He kept yelling at me and raising his arms: 'Lift me up. Pull me up.'" After a moment of quiet contemplation, she looked at me and said very matter-of-factly, "Maybe he wasn't talking to you."
I thought about each of those stressful moments as I lay in the MRI tube, choking down the bile rising in my throat, and pushing back tears and panic, I started to pray, or plead, or some messy combination of the two, trapped in the tiny tube. "Please don't let me die in this machine. Please don't let me have a brain tumor or some crazy disease. Get me out of here. Get me out of here." By "here," I meant the machine, the hospital, the day, and the nightmare. Get me out of here.
I was living in the perfect storm of stress in my life: lack of sleep, overworking, jet lag, regular life stress, and the loss of someone I had loved my whole life. The vertigo was joined by overwhelming fatigue, tingly hands, and a numbness in part of my face. I was sad, tired, and completely depleted and sick. I thought the vertigo was an ear infection and my doctor thought so too, at least that's what he told me. Two weeks later, I still couldn't walk a straight line, let alone ride a bike, and I went back to the doctor. We started with MRIs of the head. Lesions suggested something, but nothing definitive. More tests: ear testing, eye testing, spinal cord MRIs, heart ultrasounds. Was I having mini strokes? Did I have ALS? The last test, a spinal tap, sealed the deal.
That's when I got the phone call from my doctor at the neurology office. At first, she told me I didn't have MS, and we should take a "wait and see approach" to determine the next step. She said she was surprised no one had called me since they got the results the week before. I told her I had only had the test a few days ago. She said she had to call me back. Three minutes later, she called back and said, "Oops. I was looking at the wrong chart. Yep, you have MS."
This wasn't the defining moment, although it felt like it for a while. It was the scariest moment and the messiest. My fate was delivered over the phone, while I was at work, as casually as "Do you want fries with that?" I didn't know what to do with the information. I had no next step, no plan, only fear.
I had missed the MS ride, was diagnosed with MS while raising money for it, and still couldn't get on my bike. I hung up the phone, cried all the way home, and took a Valium left over from treating the ear infection I never had.
Chapter Two
Let's Go for Ice Cream
One of the hardest things I had to do was tell my daughter I was sick. I had checked some library books out a few weeks earlier and read nearly everything I could about MS. Because I didn't know if I had it or not, I wasn't as interested in the treatments as the symptoms. What was going to happen to my body if I did have MS? Nothing good, according to these books. I could go blind or get double vision from optic neuritis, I might lose or struggle with bowel and bladder function, experience cognitive decline or end up in a wheelchair. These books were decades old, and conventional treatments had only been available for less than twenty years. They made MS sound like a death sentence-or worse-in my mind. I knew the first thing I had to do was tell everyone what was happening. It never crossed my mind to keep this a secret even though I knew it would be scary to talk about it. What would people think? Did they even know what MS was? The adults in my immediate family knew what was going on, but other family, friends, and coworkers had no idea.
The last person in the family I told was my daughter. It was the conversation I was dreading most. Bailey and I are close. She is my everything. I was divorced when she was three, after seven years of marriage, although I knew I'd be leaving from the day she was born. Raising a child for so many years alone provides a unique bond. Bailey and I are so alike. People tell us all the time that we even use the same facial expressions. I could never say in words how I feel about this child, and that's why telling her that I was sick was so hard. I peeked into her bedroom and said, "Let's go for ice cream." I took her to an ice-cream shop down the street from our house. For some reason, I thought a happy place would discount or offset the sad news. I also needed the leverage of an environment that would keep her from running to her room. I wanted space for emotion, for questions, for comfort. Most of all, I just wanted to soften the blow.
We sat down at the table with our cups of ice cream and I attempted to make small talk. And then I said, "Remember how I had vertigo and was going to the doctor?" Of course she did. And then I said something ridiculous like "Don't be scared" or "This isn't as bad as it sounds," and before I said another word, tears pooled in her eyes, her beautiful brown eyes. And I said, "I have MS." She started crying and said, "I knew it." She left her ice cream and ran out the door. I followed her, unlocked the car, and we both got in the backseat. I felt like I was stealing her childhood and wanted to cry. Not for me or the MS, but because I couldn't possibly know what was going on in that little heart and brain. I knew she was strong enough to go through this with me, but my instinct to protect her was strong too. I understood why so many parents hide the pain they are experiencing from their children. I quickly told her the two things I thought she needed to hear, and that I fiercely believed in that moment: "I'm not going to die" and "You aren't going to get it." We cried and cuddled in the backseat for a while and when she calmed down enough, I brought her home and we relocated to her bedroom. We jumped in her bed, cuddled up, and talked quietly. She told me that she had seen the library books about MS in the car a few weeks ago. I told her I didn't know then, that it was only a possibility. Had I known she was already worried, I would have started the conversation sooner. See, kids are smart. They see and hear things. If you've ever tried to hide something from your children, you know what I mean. If we don't step in and share with them and include them, they imagine things much worse than reality. I told her that while things felt really scary right now, that was going to change. I told her that MS wasn't going to be the center of our lives and that after a few months, it would become the new normal. As we both calmed down and kept talking, my uncertainty began to melt. In that moment, I went from scared and worried to knowing that I would fight for my health and win. I would do that for us.
We fell asleep, and when we woke up we were a little less scared than the night before.
Chapter Three
Love and Other Drugs
Let's start with the love part. Love was more powerful than any conventional therapy I tried. It still is. In the beginning, love was . . . the calls with my sister when I didn't know what was wrong with me. She was across the ocean but it felt like she was holding my hand. Love was the way my husband found a thousand ways to help me before I even knew how to ask for help. Love was how my parents rallied around me and said they would do anything to help. Love was the time my daughter got in trouble for writing about the benefits of stem cell therapy for MS at her Catholic school, and love was when my sister-in-law organized a cycling team, Team TLC (the team who loves Courtney), to raise funds for MS research. All of those loving things, along with many others, healed me.
For the Love of Puppy Breath
Three weeks after my MS diagnosis, we happened to be watching a local pet adoption cable channel, and our hearts broke over every sad pet story. We weren't considering a puppy, even though Bailey had wanted one, so I'm not exactly sure how we got hooked on that channel. Then a dog named Lloyd was featured. Lloyd was a little black puppy with brain damage. I thought about my recent MRI scans. I had brain damage too. "We're meant for each other," I thought. Before I knew it, my heart (or my brain damage) took over and I said, "We're adopting Lloyd." I was usually the voice of reason in the family-or at least willing to discuss big decisions before jumping-but I had made up my mind. My husband was speechless, and my daughter hugged me.
I was over the moon. I thought I wanted to heal Lloyd, but what I really wanted was for Lloyd to heal me and to heal our family. We needed some good news, something to lift our spirits after weeks of scary health stuff. Lloyd seemed like the perfect lift. After talking with Lloyd's foster mom, though, we learned that his needs were far outside our capabilities. Lloyd needed a stay-at-home parent, and I wasn't that. I was a busy, working mom with a chronic disease. I didn't have the time that Lloyd deserved. It was heartbreaking to realize Lloyd wouldn't become part of our family, but once I had said "yes" to one puppy, we couldn't close the door. We decided to look at other puppies. Clearly, my desire for simplicity hadn't kicked in yet. I just wanted some relief from the pain and heaviness. I wanted to be light.
