The Promise: A Tragic Accident, a Paralyzed Bride, and the Power of Love, Loyalty, and Friendship (17 page)

CHAPTER 37

My Mother’s Birthday

On May 23, 2013, my third quadaversary, I received an
incredible gift. My friend called me.

I’d grown a little lazy about calling her. I was getting ready to take my mom out for her birthday, when my phone rang.

“Hi,” she said.

“Hi, how are you?” I asked.

“I’m okay. I was thinking about you today, obviously.”

“How are you feeling today?” I asked.

“Well, I want to tell you that the last three years on this day, I would just sit and look at pictures from the past. I’d feel so sad. I used to have a really hard time with this day. All I could think about was you being in this chair.”

“I know,” I said. “It’s been rough for you. I’m sorry you’ve had such a hard time.”

“Well, I wanted you to know that I can look back at that day now and think of all of the really amazing things you’ve done from your chair and how many people’s lives you’ve impacted. I just wanted you to know I’m really proud of you.”

“I’m proud of you, too,” I said.

I knew this moment didn’t mean she was all right forever or that she was over what had happened. But it was such a powerful snapshot in time for us both—a considerable step toward healing. It meant to me, at least, that sadness hadn’t consumed her, that maybe she was on the way to really feeling better. That’s all I’d ever wanted for her and for all of us. I was so happy to talk to her and hear her voice. We’d both grown and we’d both healed, and we did it together.

Everyone always used to ask me what I planned to do on the anniversary of my accident. The first anniversary was tough, there was no denying that. But I had never wanted to see the day the same way many others in my situation might have. I didn’t want it to be negative for me. It was a bad day, don’t get me wrong. But May 23 was really no different than May 24 or May 25. The days that followed the accident were just as crappy for me as the actual date, so I didn’t feel there was a difference on that day.

I think the majority of people attached their anniversary to a specific date, and I was unique in that I’d chosen not to. I decided I would acknowledge it briefly, in my head, but I wasn’t going to be sadder on that day. I didn’t dwell on that date because I live with this injury every single day.

Some people in chairs who acknowledged their anniversaries grew depressed and anxious. Other people had parties. I thought about doing something to celebrate life. People get killed in accidents every day. I survived. I could have died that day. Instead, I hit at a bad angle, and it wasn’t catastrophic. That’s a reason to celebrate, and I like celebrations.

I thought of May 22 as the day I’d had my bachelorette party. It’s funny because I remembered it as a really awesome bachelorette party, and I think that surprised some people. We had talked about having another bachelorette party before the wedding, but we just didn’t. I had had one already, and it was amazing—the best bachelorette party I could have ever asked for. It was the next day, technically, that I was pushed in the pool—May 23—and, oddly, I didn’t mix the two up in my head as one event. Maybe for self-preservation or to maintain my sanity, I kept them separate. I remembered the one event as wonderful, and all I’d hoped it would ever be, and the other as not so great, but as something I had triumphed over.

For my friend, because she struggled with pushing me, it was never going to be a day for celebration. I knew that. It had been a sad day for her. Since May 23 was actually my mom’s birthday, I wanted it to always be more about that—a special day to celebrate her. I wanted that for my mom, and I didn’t want it to be anything negative.

On my third anniversary, I made a wish for the future: I hope someday May 23 will just come and go and the accident, for both of us, will escape our radar for good. I hope, too, that something wonderful happens on this day for my friend, something that eclipses the accident for her forever.

Epilogue

I was submerged again, but this time it was peaceful, even though the force of the waves in the ocean was tossing me around. I couldn’t swim because I couldn’t move, and yet I felt really calm. I’d been offered a life jacket, but I declined. Having grown up in the ocean, I knew how to hold my breath while I was underwater. With my eyes closed, a few feet under, motionless, I thought back to the accident. It was the floating upward toward the surface that reminded me of that day. I was underwater for what felt to be about the same amount of time—ten seconds. I knew if I had to wait more than five more seconds for someone to grab me, I would have serious problems. I felt confident someone would be there. I had a smile on my face this time. I wasn’t remotely afraid. I had that one-second inkling of a thought:
Do they know where I am in this big ocean?
I’d overcome a lot during the past three years, but this experience was a major win for me.

I was underwater, deep in the ocean, because I’d been thrown from my bright green surfboard after riding a wave. I got the opportunity to surf from an organization called Life Rolls On, run by Jesse Billauer. He was a pro surfer, and years ago he went headfirst into a sandbar and broke his neck. He sold me my board and all the equipment to make it adaptive for my injury, such as the straps normally used for kiteboarding. I was able to break it in that day. The Life Rolls On team was all around me, so I felt safe. Before we left the sand, they taught me how to lie on my stomach, propped up on my elbows, which were tucked into a pocket on the board. They showed me how to lean with my body to control the board. Then they helped me get on the board and out into the ocean, where the waves would take over. I had two safety measures offered: I could wear a life jacket and I could have someone ride with me. If I were able-bodied and trying to surf for the first time, I wouldn’t have accepted either one. So for my first ride on a surfboard, I ignored my injury and declined both.

Part of the reason I said no to the life jacket was that it was a little more awkward and bulky, but also because of image. It was much less badass. I didn’t want to be covered in floating devices. I’m an ocean girl, born and raised. Even this injury wasn’t going to put me into a life jacket in my playground. Not a chance. I was going for it. I trusted that the team would come and swoop me up as promised, and in the meantime I’d let the water safeguard me while I held my breath.

There I was, propped up on my new board, with six or seven people around me in the water, on a surfboard for the first time in my life. They had to help me get over the waves. Able-bodied surfers dip their heads under the waves as they make their way out. These guys helped pull me up and over each approaching one. The water splashed in my face and I loved it.

I got out just past the break, and the waves were coming in pretty hard. I was excited but not afraid. The team turned me around, had me facing the shore, and then some of them swam away, back to shore. Just before they pushed me onto a wave, they said, “Okay, ready?” Then one person on either side of me gave me a push. I tried not to fall off, but I did. I didn’t quite have the hang of the board; it was an advanced board, which required some getting used to. I realized my error and figured out the proper way to balance myself once I got back on, by sitting a little higher up on my elbows, with my head up to take a bit of the weight off.

They asked again, “Okay, ready?” I said, “Yup.” And they shoved me off and I caught that wave. It was an amazing feeling. I can’t remember how long I rode it before getting overturned, but I felt so happy. The water splashed, and I was moving pretty darn fast because I could feel it on my face.

I am determined to overcome the accident. That’s a certainty. But I want to be clear that there is an enormous difference between showing positivity and being content with my injury. Just because I work hard and live a full life doesn’t mean it’s okay with me. I often get concerned that my outlook masks the hardship people like me face all the time and also potentially diminishes any urgency for finding a cure. We can be happy and independent despite our injuries, but this is by no means the life any of us would have chosen for ourselves.

This kind of disability is portrayed very differently than something like cancer, which has more urgency for a cure. I want a cure for this, too, right now. Choosing to be strong and triumphant may make us appear as though we’ve outsmarted our injury and battled it with a great outlook, but behind closed doors we suffer terribly. Our fight is 24/7 and will be for the rest of our lives. We’re a force, too. According to the United Spinal Association, a spinal cord injury (SCI) happens in the United States every forty-one minutes. That adds up to about 12,000 new injuries per year. There are 1.2 million people in the world who currently suffer from an SCI.

I’ve heard people on a certain reality show that highlights people in wheelchairs say they love life in their wheelchair and they wouldn’t go back. While I love what that show does for the community and how it breaks stereotypes, I don’t agree with that sentiment. I’d go back if I could. I’d give anything to go back. I hate that my body has turned against me, and that the nerve pain soaks up a lot of my time every day. Mentally, you can be strong to survive an accident; you have to be. You can laugh at all the antics and challenges, and you can have love and support. But at the end of the day, the basic facts of this injury can’t be willed away with positive thinking and a great outlook. An injury like this is expensive. To be clear, a newly injured quadriplegic requires between $400,000 and $700,000 in healthcare and treatment. After the initial hospital and rehab work, the follow-up costs are about $100,000. I can’t afford this, and I know most people in my position can’t. Insurance covers some things, but the 20 percent I have to pay is still beyond my means.

I’ve always been a fairly liberal-minded person, and I cared about politics even when things didn’t affect me directly. I was concerned about human rights and education, but I wasn’t really aware of the crisis we face as a nation with regard to healthcare. I’d been young and healthy up until the point of my accident. My parents are young and healthy. Chris and my friends, too. We faced a very expensive crisis after the accident.

The hospital was expensive, and the bills are still stacked up and waiting to be paid. They’re not from my original stay so much but from my continuing doctors visits. It’s so difficult and overwhelming trying to keep up with everything. Rehab, which I really need, is out of reach. I can’t afford to go; just paying the premium on healthcare for us is all we can afford. I was watching the Democratic and Republican national conventions, right around the time I was working on bolstering my Twitter numbers, and I started having conversations with people online, arguing about healthcare. Suddenly my life and my well-being are totally affected by politics.

I’m not eligible for Medicaid. If I were, I’d get a caregiver to help me. That’s because I made about $28,000 at my job, so I now earn 60 percent of that through long-term disability. That tiny income combined with Chris’s state teaching income would make the monthly deductible around $1,000. We don’t have that much money. We can’t afford that. I’ve been fortunate to have had some great organizations pay for stints of care. Walking with Anthony, for example, sent me to this really great place called Project Walk in Carlsbad, California. Medicaid would provide regular rehab, which I can’t afford. If the healthcare situation were different in this country, my mom could move back home with my dad and still have her job, and I could get the treatment I need.

Originally, following the accident, I had inpatient rehab at the hospital, which was covered through insurance. After that I received only twenty days of rehab a year. Once those twenty days were up, I didn’t get anything additional. I was trying to relearn every aspect of my life, and I had the same coverage as someone who had torn their knee. Rehab costs about $400 an hour until I meet my $3,000 deductible. There’s no way I can afford that—not many people can.

Chris teaches middle school, so we’re on the state health plan. The cost to cover me alone is $625 per month. That’s just for the premium, before the deductible or out-of-pocket expenses. When we were on TV before we got married, the misconception was that we were scheming the system, trying to qualify for Medicaid, and that’s why the wedding was on hold. It wasn’t a scheme. We were researching our care options; it was sad, of course, that we had to consider our union in terms of how it might affect health coverage.

One of the worst comments I ever read related to the healthcare drama was that I was a “parasite.” Someone read my story of love, loyalty, and overcoming adversity and that’s what he decided. This person thought that if I married, I wouldn’t qualify for Medicaid and it was all part of a big master plan to milk the system.

I was just out of college, without enough work experience to qualify for Social Security Disability Insurance, and the deductible to receive Medicaid would have been much higher than my insurance premium of $625 a month. The irony was that I didn’t qualify deductible-free, even as a single woman. I couldn’t afford what I would have had to pay. But people were writing nasty comments all over the Internet, saying that I was attempting to abuse the system by putting the wedding on hold. It’s as if people assumed that being disqualified from benefits meant that we were perfectly financially capable of going on with our lives without them. But it wasn’t like healthcare treatment was some sort of luxury item. Did they think I’d rather be milking the system or able-bodied, working a full-time job, walking, and never needing a doctor? Well, the answer is obvious. And please, who knows any middle school teachers with disabled wives who are getting rich off all that government healthcare?

Six months after breaking my neck, someone even called me “lazy” for not working. Six months! I hadn’t even received my fitted wheelchair yet. We were scrambling for some semblance of order, making it up day by day as we went along, but they would see me on TV and think, “She should get to work.” I hadn’t even figured out how to go to the bathroom, and apparently I was lazy. Before I was injured, I was anything but lazy. I went to college because I wanted a career. I worked fourteen hours a day before the accident and would give anything to do so again. I paid for college. I am still paying for college.

But even more recently, people have uttered horrible comments about the fact that we shouldn’t be allowed to have children. We are doing what all parents-to-be do. We’re assessing our finances, planning for our child’s future, and making sure we can afford to have a baby. We are lining up the support system of our family, which we are grateful to have, and we’re going to make our dream come true. The child will be paid for and cared for by us, so it’s really no one else’s business. Just because I’m in a wheelchair doesn’t mean I’m going to be a bad mother. I’m going to be a great mother, just like many women in wheelchairs already are.

The bottom line is that in this country healthcare is a mess. We shouldn’t have to think so hard about whether to go to the doctor because we can’t afford it. Everyone I have to see is a specialist. I’m a spinal cord injury patient. Every healthcare decision I make is financially motivated.

But what I can do from all of this is defend people who are disabled. I read these comments and respond because I feel like it’s my job to stand up to the ignorance and mean-spirited words people write. If they are saying I shouldn’t have kids, I’m defending myself on behalf of everyone in my situation because I have the platform to do so. I take it personally and am offended for all of us—the entire society in my situation and the situation with healthcare itself. The ignorance keeps people down. And that really pisses me off.

I don’t cry about it, but I become very angry. I wish people would have the guts to say things to my face, so I could more specifically shut them down. But sitting behind a computer, commenting on a thread, is weak. They think I have no voice there, but I do here.

I have developed another voice, too, in all of this, but it’s not a good one. It’s my own and it’s the one that talks to me alone. I know we all judge ourselves. I did even when I was extremely fit, but there’s been a lot I have had to accept with this new body of mine, and it’s been difficult. I am a new person now. Realizing that has been the ultimate challenge, but I have done it as best as I can. I went from being a lifeguard to being watched over like a child with floaties. I used to teach aerobics and light weightlifting to seniors, and now here I am struggling with two-pound weights, a shadow of the active and athletic girl I once was.