The Promise

by Rachelle Friedman

  That was the day I left and got to go home. Everyone had made such a significant impression on me and my life during my time there. They were such wonderful people. I guess I’m glad the closet gag gave me the chance to leave an impression on them . . . and maybe let them know I’d be okay once I left their care because I had a good sense of humor and was surrounded by a lot of love.

  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 bladde
r 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.

  CHAPTER 17

  Adjusting at Home

  The process of getting out of bed every morning took about an hour once I refined it. It took up to two hours when I first got home, but we managed to figure out how to make it quicker. The pain and dizziness slowed things down considerably, but on a good day, when my mom dressed me in the morning, we’d get that part down to ten minutes. Since I have some arm use, I could have slid a top on fairly quickly, but pants would have taken me about forty-five minutes to get into. My mother sped that up considerably, so it made sense for her to start helping me dress.

  Sleeping was a big challenge, which I hadn’t expected. Like anyone, if I were up all night, which happened with great frequency, the morning would be rough. I couldn’t roll over or change positions. When I first returned home, my mother and Chris would turn me over in the middle of the night. There was initial concern I’d get bedsores from not being able to move. Chris would go to work wiped out from not getting continuous rest, so they eventually switched off and let him turn me only on weekends. After a few months they weaned me off of this process and I didn’t get pressure sores at all. I missed being able to roll over and wrap myself around Chris. I compensated for that by cherishing his touch. Sometimes, when I was awake at night, I’d look down to see his hand on my hip. It made me feel safe seeing it, knowing he was embracing me, even if I couldn’t feel it.

  The entire situation was exhausting for everyone, especially my mom. We had to figure out how to dress me, book and keep track of appointments, and transport me to those appointments. It was an enormous undertaking, and we didn’t know what we were doing. One morning, after my mother helped me out of bed, dressed me, and everything else, at a time when we were still getting our routine down, she was styling my hair for me. I asked her to spray hairspray on me, and she was so tired and frazzled that she sprayed Pine-Sol on my hair instead. She had my hair perfect, too. She was so distracted that she soaked it in cleaning supplies. We had to redo it, but we laughed so hard at what had happened, we cried.

  It was difficult to keep up with the clutter, too. I loved a clean house, and I was frustrated at first with all the medical supplies stacked up in my bedroom. I think that impacted my sleeping a little.

  My friends were so amazing during this time. They all wanted to help and give my mother a reprieve. Carly used to make it over twice a month to hang out and keep me company. While she was there she helped take some of the responsibility off of my mom by cathing me. It had to be done four times a day. I threw the bag away as it filled. This duty had the potential to be upsetting, but it was mostly humorous when she took the first couple of shots at it. We laughed about it a lot, about how we couldn’t imagine two years ago that one of us would be seeing me from this angle. She also knew how to transfer me, lifting me up onto my chair. She was great company and gave my mother some much-needed relief.

  My brother, Aaron, was a big help as well. For the first six months, he moved from Virginia Beach to North Carolina to live with me. He was able to pick me up and put me on the couch, and it relieved my mom a bit from having to do everything.

  We wound up actually making a crazy connection through some serious talks, which became fairly deep. Once when we were sitting up at night on the couch, he said, “I thought the world was kind of a cruel place. I thought it was filled with only selfish people. I have a different outlook now, after seeing so many people who care about you, stepping up.”

  He saw my friends, my parents, Chris, even strangers who donated time and energy and goods and money that changed my life, and he was moved. He hadn’t realized people could be like that. He was jaded before I was injured. The accident had actually restored his faith in people. When I heard things like that, it made the injury feel easier, as if there was an upside to it. I had pain and suffering, sure, but I grabbed hold of moments like this with my brother, these little enlightening revelations, and it kept me going.

  Aaron stayed with us until we managed to restore a sense of order, and then he moved in with our friend Tom, who was close by. It was really nice to have Aaron near us. One time he was over at the house hanging out, and my mom stepped out for a little while. I was still in bed. I can’t remember what I dropped, but whatever it was it must have made him think I had fallen out of bed. Three seconds later, he threw open the door.

  Startled, I said, “Well, hello there.”

  He said, “That was so loud I thought you fell.”

  We laughed so hard. He must have hit only three steps of the full staircase, he moved so quickly.

  I felt like I didn’t really know him very well before the accident. Maybe my entire life. He was eight years older, so we never hung out. But after the accident we became extremely close. He lived down the street and came over for dinner, and I saw him much more than when we were young. I was grateful for renewing that connection. It was awesome just to be able to chill with him in a way that I hadn’t expected.

  CHAPTER 18

  The Ugly Reality

  Unfortunately, while I was getting used to things inside of my home, factors I couldn’t control outside of my home painted an unexpected p
icture of how people with spinal cord injuries are sometimes treated. Ugly truths began to reveal themselves to me, and I was shocked by some of my experiences.

  I’d never really given parking much thought, but when my mother started driving me around, we soon realized that accessible spaces were scarce and that few people respected the law. I even began to think about the name handicap parking and why it was still socially acceptable. The term handicap originated in a time when people who were in wheelchairs and couldn’t work would have to put a hat out for money, or a “handi-cap.” Many people don’t know that history, and when they say that word, they don’t mean anything by it.

  My first run-in with the issue was when I still had a neck brace on, and at that point I had no idea that people abuse handicap parking spots the way they do. A guy on a motorcycle had parked between the lines of two handicap spots; usually that space is reserved for a ramp to come out. Regardless, I don’t know why anyone would park there; obviously someone could come out of their car in a wheelchair, and anyone thinking logically would know that they needed space to do so.

  I was in my mother’s car, and I had to be slide-boarded out of it. My mom had to get in front of me to slide me out of the car. The guy had parked so close. Now, I was a confident person, but I did not want to be dragged out of a car like a ragdoll with a neck brace right in front of some idiot because he was too stubborn to move. It just was not a comfortable situation. I remember my mom asking him very nicely to move. He said, “All right,” and then all he did was bring his leg around to the other side of his motorcycle. This guy didn’t even look me in the eye, didn’t make any space for me to get out. He was such an asshole. He just sat there, right next to our car—one foot away from my wheelchair. A waitress came out, and he sat there flirting with her while I was struggling with my mom to get out of the car and into my chair. I said to my mother out loud, “Is this really happening?” We were boiling mad, since it was so soon after the accident and we hadn’t encountered anyone quite so obnoxious and selfish. I should have said more. I wasn’t afraid of him or even nervous, but until that point, I just had not known people acted like that. He could clearly see I was sitting in the car with a neck brace and a wheelchair, and he needed to get out of the way and he wouldn’t. I thought, Just get out of the way. Period. It boggled my mind. Of course, just as I was out and in the chair, he took off, revving up the bike really loudly and speeding away. He couldn’t even walk his motorcycle out four feet. He had to start it next to us like that.