CHAPTER 16

On My Own

I left rehab on August 13, 2010. I had so many mixed feelings about leaving. I knew I was ready to go, and I remember around the time I was being released thinking that if I had to stay there one more minute, I would snap. There were so many people there with lower-level injuries who had more function than I did, people recovering quickly, and they complained often; sometimes the negative energy took the wind out of me. I had reached the point where I simply couldn’t take it anymore. I felt for everyone and didn’t mean to judge. Not everyone had a great network of friends or a committed family, and I understood that. But sometimes the negative energy consumed the space in there. An exciting world still existed out there, and I was more eager to tackle the new challenges than to dwell on what I couldn’t do. I wanted to learn and grow and take it on. Also, I missed my dog PeeDee very much. I missed my house and my old life, which I knew was going to be at home waiting for me.

Of course, that’s what terrified me, too. Just because I was okay with challenges didn’t mean they weren’t scary. My old life was just that: my old life. Nothing was the same except my love for Chris and my family and friends. I knew I wouldn’t be able to get up to the second floor to my bedroom. The house was my home, but it was no longer what it had once been to me. I had been there only as an able-bodied person. There would be a lot of change ahead of me. All of my care would be up to us, and lots of little things could go wrong.

One of the most significant changes in my life was that my mother would have to live with us. Chris had to go to work, and my mother had to get me out of bed. I was thrilled, but I realized it would be a tremendous hardship for her, leaving her job and her husband. We all thought about me moving in with them, but that would have kept me from both Chris and rehab. We discussed briefly both of my parents moving to Knightdale, but my dad had an army-navy surplus store in Norfolk and couldn’t leave it. We knew eventually he’d sell it and retire, but until then my mother decided to spend five days a week with me and weekends with my dad.

It was hard for her, but she moved in without complaining. We knew we all had to change our lives drastically, and I appreciated that she agreed to change hers as well. I knew when I returned home from rehab that I’d continue to see my friends, go to ECU football games eventually, and eat at the restaurant that I always went to. I was able to come back to my house and be in my own environment with the people I cared about. So, in a sense, I did return to my life, but she couldn’t. We decided as I left rehab that hopefully one year or so would be enough to get me settled.

I knew then that I could manage only halfway on my own. If I wanted to wear sweatpants and a T-shirt every day, I could put that on myself. I hadn’t learned to transfer from my bed to my chair and wasn’t sure if I ever would, so my mom would have to get me out of bed and up every day. I knew having her there would make things feel as normal as possible for me, and I was grateful for her sacrifice and willingness to play my unsung hero. I learned the true meaning of friendship from my mother. She was my best friend growing up, and she set the tone for all of my other relationships.

I realized quickly that caring for me was emotionally draining for her. In addition to needing help moving, there were serious medical complications that plagued me, and seeing me struggle upset my mother terribly. She had to always be on high alert, because we realized quickly that my blood pressure dropped so low that there were days when I had a hard time keeping my head up without passing out.

I also suffered from severe nerve pain, which was an unexpected yet overwhelming side effect. On a normal day I would spend a good hour getting out of bed, because I had to wait for the nerve pain to go away. This pain doesn’t happen to everyone, and there’s no explanation as to why it happens in some with spinal cord injuries and not in others. Mine in particular was pretty debilitating, occurring mostly when I woke up but lessening during the day. In the early morning movement was impossible. Nerve pain feels like fire, it feels like needles, it feels like beatings all over, or even like a thousand bees stinging me all at once. Basically, wherever I had no normal feeling is where I would have this nerve pain, everywhere from my chest down. My brain would try to connect with my body. When it was unable to, it would send a signal back in the form of pain.

The nerve pain was one of the harshest realities of my injury, and I was told I would likely live with it forever. It gradually became a part of my life, increasing bit by bit each day. It became worse when the weather deteriorated, and some days it grew unbearable. If I had known how bad it was going to be, and how overwhelming the pain, I never would have survived this experience. Initially, I felt upset because I learned it was a rarity—very few people with a spinal cord injury experience my level of pain. Whenever I mentioned it to other friends in a chair, they all told me it was something they’d gotten used to, which indicated to me that we were not talking about the same pain. This was not a tingling “sensation.” It was absolute torture. If you asked me, “Would you rather walk again, but live with the nerve pain, or stay in the wheelchair and be pain free?” I would choose the latter.

I remember the first few times it happened, I was screaming as I was awakened by the pain. I could hear my mother sobbing in the other room, upset that I was suffering. I felt so badly for her. I tried multiple pain-relieving meds, but none seemed to work. It was frightening because the main one I took would essentially destroy my life over time, which made me realize it would have been nice not to be on any meds at all; I couldn’t be sure that they were even helping me or having a positive impact.

My mother and I dealt with logistical issues, too, once home. Once, on a really hot day, my mother was trying to get me into the car, and I fell on the hot pavement in the driveway. She couldn’t lift me because I was too heavy. I was in shorts, lying there, and she started to panic. She thought my legs would burn on the hot asphalt. I said to her, “This is not the time to panic. I’m okay.” She ran into the garage, found a very low-rise lawn chair, and managed to get me into it. I had some scrapes on my knees but really nothing major.

The other issue we knew we’d face out of rehab, which was a major concern, was that if we had any kind of problem medically, and we did occasionally, we’d have to go to a doctor or hospital. There was no longer a nurse’s button to press for help. There wasn’t all this great equipment, or fast diagnoses, or people checking up on me all the time. It was on us. Period.

Very few local places had experts on spinal cord injuries. A couple of months after I returned home, I had an incident that sent me to the emergency room. When I was in the hospital recovering, at least I knew there were people around to help. But when I was home, it was scary when something went wrong. In order to go to the bathroom, I had to insert a catheter, and one day when I did that, there was all this blood. I had no idea what was going on. I was dizzy, and my body was reacting badly. My mother and I were alone, and we didn’t know what to do. Normally, at the hospital, we’d call a nurse in, but we were on our own, and I couldn’t even sit up enough to get into the car and go to the hospital. We had to call an ambulance. So I had to have EMS come to the house and put me on a stretcher, because I was so dizzy. I had an infection, and my body had to tell me in a different way than another person’s body would tell her. I was extremely lightheaded, and my blood pressure was sky-high. It was a traumatic moment. I was thinking, This is not supposed to be my life. I am not supposed to have EMS coming to my house and getting me. It was a moment when I had to suck it up and fight through it.

It turned out it was a really bad bladder infection. For an uninjured woman it would hurt like crap, and she would know something was wrong early on and of course go to the doctor, get some medication, and clear it up. But for me it was different because I couldn’t feel anything. An infection wouldn’t alert me with pain. My body had to react in a different way. I got clammy and sweaty, had goose bumps, and felt dizzy. They were all signs that something was wrong with my body.

These were symptoms of autonomic dysreflexia, which affects people with spinal cord injuries like mine. Because I was hurt at a higher level of injury, my autonomic nervous system was also affected. If I had been hurt below a T-7, which is someone paralyzed only from the rib-cage area down, then my autonomic nervous system would have been intact. My blood pressure would have been normal, I would have sweated regularly, and so on. But when there was pain in my body and something went wrong, my nervous system reacted and my blood pressure shot up. I got goose bumps, felt sort of clammy, and had the shakes. I could die if I didn’t figure out what was wrong quickly. I could wind up dying from a urinary tract infection because my blood pressure increased so dramatically.

I was lucky that I experienced it only twice. Some people get it all the time. If I was wearing pants with a zipper on them and they were poking into me, I’d become really dizzy and I’d have to look at my body and try to determine what was wrong. It was scary because I couldn’t feel anything from my chest down, so numerous things could be the cause—it was a large area!

One weekend, Lauren came to visit and stay with me. My mom was like a second mom to her, so we all hung out together all weekend. She caught a real glimpse into the reality of my injury. Chris was still carrying me up the stairs on his back at that point, as the house hadn’t been updated yet, and since I was cold all the time, I had to sit near the heater. She’d heard all about this from the other girls, but seeing it was different. We had a really fun Saturday, all of us, going out to eat and laughing, but on Sunday, before Lauren even woke up, my mother and I had to go to the hospital because I had another UTI. Lauren called us when she woke up, and it seemed like we were going to be at the emergency room for hours and hours, so she headed back to Charlotte.

I think it was an eye-opener for her, seeing the day-to-day. She did get to see me play quad rugby, which was cool, and we did hang out, but the reality of it all wasn’t lost on her. She even told me later that her life’s mindset was different after that, that her perspective on life and enjoying it was so altered—she appreciated everything she had so much more. And her love of our other friends was strong and genuine. She told me she was speaking to one of the other girls once, and that girl said she was going to run, to use her legs as much as possible, to honor me. I thought that was pretty cool. I know each of the girls handled and processed the accident differently.