Gratitude in Motion Read online

  They didn’t know it then, but many of those kids ended up making lifelong friends at the conference. They traded contact information and stayed in touch, creating this web of caring kids growing into caring adults together.

  I learned from Jody that when you’re doing something that matters, you matter. Working with teens is what spoke to me, but it can be true of any cause that’s important to your life. Everyone needs money to live, but more than that, we also need meaning to live, so it’s important to find ways to spend significant time doing things that make us feel like we’re making a difference for others. A full wallet can’t fix an empty soul.

  Our program in Vermont took off big-time. Soon there were programs at local high schools that attracted more than a hundred kids at a time. It was a resounding success, and so gratifying to have started it. In fact, everything in my life was looking pretty terrific.

  And then the next tornado ripped through my world.

  Chapter 4

  Brain Surgery

  SINCE MY TEEN YEARS, I’d had bad migraines. In my midtwenties, though, they got worse. I’d have to be in bed for a day or two with nausea and horrific pain like someone was stabbing me in the back of the head with a knife.

  Doctors prescribed medications that didn’t work, and when I went back again and again to ask if there was anything else we could do, one of them said that it was probably anxiety and depression that were triggering the migraines.

  “Do you want to try Valium or a similar antianxiety medication?” he asked.

  “I’ll try anything. Right now I’m fantasizing about driving a nail into the back of my head to release the pressure.”

  The antianxiety medications didn’t work, either. I was frustrated with the medical dead ends, and in 2007, I decided to try a chiropractor. He had a tough time adjusting the vertebrae in my neck, though, and said, “I think you’re just too guarded—you’re not letting yourself relax.”

  It’s very hard to try to relax, but I did keep trying. I went back several times. Finally, after a few weeks, the chiropractor was able to make the adjustment he was trying to make to my neck, and he seemed pleased. However, within twenty-four hours, I was a total mess with a set of symptoms that terrified and baffled me.

  The first time I went to the bathroom, I passed out on the toilet. For weeks afterward, anything that caused heightened body responses made me dizzy or caused me to actually lose consciousness. It happened if I raised my voice too loudly. It happened during sex (such a mood killer). It happened if I bent down to pick up something off a low shelf in the grocery store. I couldn’t see straight. I was a wreck whenever I did anything that involved physical strain.

  I had to stop volunteering as an EMT because I was more likely to be a patient than be capable of treating a patient.

  Finally an MRI revealed a small cyst in the center of my brain, but the doctor said it was insignificant and probably not contributing to anything—just that it needed to be monitored to make sure it didn’t grow or change. We did two repeat MRIs, but they found nothing else abnormal to explain my symptoms.

  Within two or three months, I deteriorated further. The next troubling symptom was mixed-up word association.

  “Can you hand me the pen?” I’d ask—when I didn’t mean pen. I meant phone. And then I was totally confused when a friend handed me a pen, because clearly, hadn’t I just said that I needed the phone?

  Then there was the extreme forgetfulness. I’d put cauliflower in my grocery cart, then walk down the aisle and ten seconds later think, I should get some cauliflower, turn around and pick it up again—completely unaware that I had literally just put some in my cart.

  Finally, I went to Dartmouth-Hitchcock Medical Center in New Hampshire to get another opinion. Doctors there did another MRI with contrast, and this time the results were very different: Within hours, I got a phone call saying that they thought they knew what was causing all my problems and that it was something fixable.

  “You have an Arnold-Chiari malformation,” my doctor told me. “They’re relatively rare, but we set up a consultation with a neurosurgeon here for you next week.”

  As if I were going to just sit on my hands and wait that long. Of course, I began doing my own research and figured out the crux of what it meant: It was a structural defect in my cerebellum, which controls balance. Normally the cerebellum sits above the opening to the spinal canal, but with this kind of malformation, it protrudes below the spinal canal’s opening. This puts pressure on the brain and can block the flow of cerebrospinal fluid. It’s something that can form later in life due to injury or infection, but it’s most commonly there from birth.

  My brother Erin’s wife, Nadine, knew a renowned neurosurgeon at Columbia University Medical Center in New York City, Dr. Christopher Winfree, who specialized in surgery for this sort of defect, so I went to see him.

  This is the man who’s going to be inside my brain, I thought. And here I’d thought I’d already been as intimate with a person as one could be.

  “You have a beautiful textbook case,” he said. “You’re going to need a procedure called posterior fossa decompression. Let’s get you in for surgery next week.”

  So soon? I was terrified.

  “What will it entail?” I asked.

  “We’ll have to shave the back of your head and then make an incision. We’ll open the back of the head approximately six inches and permanently remove a little over an inch of your skull. The point is to alleviate the swelling and let the spinal fluid get back to where it needs to be. When the brain has this herniation, the only way to fix it is to get rid of some of the skull to give it room to breathe. Then we’ll cauterize the cerebellar tonsils so they’ll stop herniating, and we sew on a patch to widen out the dura, which is the protective covering of your brain and spinal column. We leave the patch on there permanently to provide more room for the cerebrospinal fluid to flow.”

  “Well, that all sounds…horrifying.”

  “It’s not an easy experience, but you should do fine.”

  “What are the risks involved with a surgery like this?”

  “There’s surprisingly little risk. With any surgery that involves the brain and spine, there is a risk of nerve damage, but it’s a minute risk in this case. There’s also a risk that you’ll have cerebrospinal fluid leakage, which could require a surgical correction. And, of course, the same risks as you’d have with any surgery with anesthesia: blood clots, stroke…”

  I put my head in my hands.

  “There are no other options,” I said—more of a statement than a question. I knew there was nothing else. This doctor was going to permanently remove a piece of my skull, and I had no real choice but to put my life in his hands and pray that it all would go right.

  “You’re going to feel a lot better after this surgery is over,” he said. “Almost all patients who have this surgery have at least some relief of their symptoms.”

  “Some?”

  “There can be residual symptoms, especially if there’s been any spinal cord damage. But let’s think positive. Afterward, you’ll need to take it easy—you’re going to have staples in the back of your head and neck, and it’ll be difficult to lift your arms. You’ll want to wear very loose clothing until you’re healed. Make sure everything buttons in the front and doesn’t have to be pulled over your head.”

  I left there in a haze. It was so much to process. The surgery would be five to six hours long, and then there would be weeks of recovery where I was not allowed to lift anything heavier than five pounds, bend over, do housework, or do anything else that might increase pressure in my head, like straining during a bowel movement or having a prolonged cough (as if I could control that).

  Setting the right scene was important to me. I asked a Native American man I knew from Colorado if he would send me a recording of him singing a song I’d heard him perform at a peace conference. He sent me back five minutes of beautiful chanting and singing that I would play through my earbud
s in the operating room prior to going under anesthesia.

  Before surgery, I drove myself to New York because Paul was working on a big project. The night before I was set to go in, I went to the Palisades Center mall to buy recovery clothing. I started sobbing right there in Neiman Marcus. Sobbing, walking through the pajama racks looking for nightgowns that buttoned in the front. For when I had a chunk taken out of my skull and couldn’t dress myself. What had I gotten into?

  When the time came the following morning, I wanted as much knowledge and control as I could have. I wanted to see the surgical tools and the bed I was going to lie on. I wanted to make eye contact with everyone in that operating room. Instead of being wheeled into the OR, I got permission to walk in and lie down on the table by myself.

  “After this is over, you’re going to be on a morphine pump,” the doctor told me.

  “No, I don’t want any narcotics.”

  “Trust me, don’t fight this. You’re going to want to use it.”

  They showed me the cage they were going to screw my head into, and the little saws that would cut into my skull. I made a point of talking to everyone. “My name is Colleen,” I said to the anesthesiologist, the surgical assistant, the nurses. I wanted them to see me as a person, not just a patient. “Would you please each look me in the eyes and tell me your names, too?”

  I’m sure the request surprised them a bit, but they did as I asked.

  “I work for AmeriCorps as the director of a teen center. I’m not just a patient. I love to hike and bike.”

  I hoped that it was enough to make them feel invested in the outcome of this operation, to do their best jobs to ensure I would walk out of that hospital soon to get back to the important work I needed to do.

  Then I noticed what was playing on the radio in the OR.

  “You’re listening to Metallica?” I asked the surgeon.

  “Yeah! It’s good brain surgery music.”

  In a way it was reassuring to imagine how confident he had to be to rock out to Metallica while performing major surgery. It was also a funny contrast to my Native American peace song. I put on my earbuds and everything went black.

  The next thing I knew, I was waking up in the recovery room with a strange bubbling sensation in the back of my head, like a gurgling stomach—but in my brain. Everything was spinning and I had a hard time focusing or lifting my head. Then came the uncontrollable vomiting. Every time I threw up, the pain in my head was awful. They gave me Zofran for the nausea, and the nurses started pushing the morphine pump for me because I was too out of it to even decide for myself whether or not I needed it.

  I stayed in the ICU for two days and then a step-down unit for another two days. Paul came to visit and said, “See? Don’t you feel silly that you were so upset?”

  Hmm. Not really. I think the occasion of having one’s brain cut open is on the list of acceptable things to totally freak out about.

  I was allowed to leave after that, but I had to stay at Paul’s sister’s place near the hospital at least until I got my staples out, two weeks later. Vertigo overtook me in those early days and I had to learn how to balance again. I was on strong steroids to counteract brain swelling, as well as heavy antibiotics, and I began having hallucinations. The bubbling feeling hadn’t stopped, and I had visions that spiders were crawling out of the incision in the back of my head. I’d wake up screaming about the bugs—and I could see them right there in front of me. It was hard to convince me they weren’t real because they were right there.

  After what felt like eternity but was actually more like a few weeks, everything gradually calmed down, my staples were removed, and I was able to go back home.

  Nothing would ever be exactly the same, of course. My surgeon told me that I should never again downhill ski, bungee jump, ride a roller coaster, or do any action sports, because I was always going to be missing part of my skull—which meant I was more prone to serious injury. He had also hollowed out my C1 through C4 vertebrae to make more room for the spinal fluid. If I were to take a significant jolt to the neck, I would have a high risk of spinal injury.

  I’d never liked roller coasters anyway, so that one didn’t bother me much.

  “I can still bike, though, right?” I had asked him. Cycling was so important to me that I couldn’t imagine my life without it. In Vermont I had gotten my first mountain bike and road bike, and I loved riding with Paul.

  “You can. Just be really careful.”

  I assured him I would be. I was thrilled that I was starting to get my life back. Being a patient was very difficult for me; I was so used to being active and on the go that it was maddening to have to sit still for weeks. As soon as I was able to, I began waking up with the sun and taking long walks and jogs, thanking God that I was alive and healthy and that the surgeon’s promises were coming true. About two months post-surgery, I led a youth hiking trip up to the summit of Camel’s Hump, the third-highest mountain in Vermont. For several kids, it was the first time they had ever climbed a mountain. When we got to the summit, we all screamed—and for the first time since my symptoms had started, I didn’t get that visceral reaction. No head rush, no feeling like I was going to pass out. It was so freeing and emotional to feel that on top of a mountain surrounded by my kiddos. We looked out over the peak together and I felt such a euphoric joy along with them, just as if it were the first time I had summited a mountain, too. I felt such gratitude for something I had taken for granted before. Maybe I would finally be able to put these months of madness behind me.

  It meant everything to me to feel almost normal again—not all of my symptoms disappeared, even after months, but probably 90 percent of my migraines were gone, and I didn’t have to worry anymore about passing out on the toilet or avoiding sex. Not that I had a whole lot of that going on—my marriage with Paul had been troubled for a while. We had both been working tirelessly for long hours. I now desperately wanted to be a mom, while he still had no desire to be a father. He had stopped saying “I love you” to me, and I could see the look in his eyes change. Our relationship wasn’t a romance anymore; it had become something else. We were more like roommates. Friends. The added strain of the surgery and its aftermath was just too much for the tenuous bond between us.

  We did go to counseling after the surgery, but when the counselor asked Paul to name what he loved about me, he couldn’t think of anything to say. That’s when I knew it was time to move on, though we remained friendly.

  Maybe I’m just not cut out for relationships, I thought. At thirty-three years old, I was starting to think that the “happy marriage and family” thing was a far-off fantasy that was never going to belong to me. I dove back into my work and tried not to dwell too much. I wanted to be there; the surgeon had predicted my recovery would take six months, but I was at work in three. So, okay, I didn’t have my own kids, but I did have “my” kids. A whole slew of them, and they needed me. I bet they could have come up with answers to what they loved about me.

  Chapter 5

  Fate. Destiny. Social Media.

  H​ERE WAS THE PROBLEM: When my time with AmeriCorps was up, so was my salary with the youth center. The executive director who had hired me said she was just going to close down the center because it was too much work to keep up.

  I couldn’t let that happen.

  Knowing I was going to have to eat and keep a roof over my head, I did the only thing I could possibly do: I kept working there for free. Just temporarily, I told myself, until we could find the funding again. I went to a city hall meeting to try to convince the city to take us under their wing and add the center to its budget. We did manage to get St. Albans to bring us into the government’s municipality, so that we wouldn’t have to pay rent for at least the next year. With the preexisting debt finally paid off, that meant I could start building a sustainable plan that would eventually pay my salary again.

  I had always had side jobs anyway, so now those side jobs had to become the “real” jobs. I taugh
t CPR classes with the Red Cross twenty hours a week at places like army bases and corporations, and I received a stipend from a rape crisis center whenever I was called to help on a case. I would have sold fruit on the side of the road just so I could keep working with those kids. They needed me and I needed them. We kept each other moving. If that meant I had to live in a minimalistic fashion, I was okay with that.

  Fighting for our center’s survival was an opportunity to teach the kids about advocacy as well. If we wanted public funding, one way to handle it was to get onto town ballots so that a percentage of funding meant for youth services could go toward our youth center. The kids would come with me to town hall meetings and we’d give presentations about what kind of difference we were making, with numbers to back it up. We learned about crime rates in all the area towns and how the center was making a long-term viable impact on crime reduction and improving educational outcomes. It was empowering for the kids to speak up for themselves and the center they loved. They helped to keep it running as much as I did.

  I loved our trips together, and I loved staying active with them. Health problems still plagued me, though, long after the brain surgery had passed. I kept getting fevers and having digestive problems, along with extreme joint pain and fatigue. I couldn’t seem to regulate my temperature—my body wouldn’t shiver in the cold to warm me back up, and in the summer my hands would turn purple and swollen. Once again it was back to doctors for a battery of tests, none of which came back conclusive for anything.

  On and off, I battled depression because of the health issues, my loneliness after the end of a marriage, and some days for no solid reason at all. Sometimes depression is just like that. You’re in a funk and you don’t really know why. It’s just this cloud that grays out everything in your view.