Preparing to go home

As I got closer to being ready to go home, there were a lot preparations that had to be made and things that had to be arranged. Renovating my house so that I could have a comfortable place to live was one of the most important preparations. However, my mom was in Atlanta, Georgia, so she had no idea how she would get the house ready. The members of my church congregation stepped up and helped with everything.

First of all, a ramp had to be built in my garage so that I could get in and out of the house. I also lived in a two-story house, and prior to my accident my bedroom had been on the second story. This bedroom would no longer work for me since there was no possible way I could go up and down stairs. Fortunately, the living room in my house was big enough to be converted into a new bedroom for me. However, this was a huge undertaking. All of the furniture had to be moved out of the living room and dining room, and all of the carpeting in those two rooms had to be torn up so that new flooring could be laid. (A member of my church worked for a flooring company, and he was able to get all of the laminate flooring donated. This was a huge blessing.) A lady from my church also came in and painted the living room and dining room, as well, just to make it look really nice.

It was such a relief to my mom that the members of our church worked so hard to get the house ready for me, since she was hundreds of miles away and couldn't easily coordinate the renovations herself. We received updates on the progress of the renovations every few days, and it was exciting because the possibility of going home was finally becoming real.

There were also many other things that needed to be arranged, as well. We needed to find a medical supply company that would be able to supply all of the things I needed, like a bed, wheelchair and other important things like that. We also needed to find a medical company who provided services in the area where I lived since I was dependent on a ventilator to breathe for me. It wasn't just a ventilator that I needed, either. There are a lot of other supplies that go along with the ventilator, and I also needed a respiratory therapist that could make home visits and help regulate my respiratory needs. My caseworker at Shepherd Center was good at helping my mom get everything in order, which was another big relief to my mom since she had absolutely no idea where to start when it came to coordinating all of the services and supplies I would need when I got home.

I had been at Shepherd for seven weeks and I was ready to go home. My mom and I had learned all of the essential things that we needed to know about taking care of a person with a spinal cord injury. I was only 19 and the prospect of living the rest of my life as a severely disabled person seemed kind of scary and daunting, but there wasn't anything I could do to change my situation, so I knew that I just had to look to the future with a positive attitude and hope for the best. I knew the Lord was aware of my situation and He would be with me and would help me.

I received a devastating blow about a week before I was scheduled to go home. My case manager found a medical company in St. Louis that was going to manage my respiratory needs, but I was required to spend another five to seven days in the hospital in St. Louis after coming back from rehab. This was so my family and caregivers could get training about my respiratory needs, the ventilator, suctioning and things like that. I know another week in the hospital after I'd already been in the hospital/rehab for 14 weeks probably doesn't sound like much of a setback, but it was to me. Going home had been my goal for so long, and I was so close to reaching that goal, but now a roadblock had been put in my path. I was so disappointed at the thought of having to spend another five to seven days in the hospital! There was no getting around this, though, so I had to make a new goal, and this was to be home by Sunday, February 29, so that I could watch the Academy Awards with my friends and eat Chinese food for dinner. (Through my experiences I've learned the importance of having goals, no matter how small or simple the goals seem, like watching the Academy Awards and eating Chinese food.)

My mom and I left Shepherd Center about 4 PM on Monday, February 23, 2004. Our flight was on a small commuter plane and it took about 2½ hours. Instead of going straight home to my house like we'd originally planned, I went back to Barnes Jewish Hospital for the week of ventilator training for my family. Something else that disappointed me was when I found out that I wouldn't be going back to the ICU. I'd had such a good experience in the ICU and I was really hoping that that's where I would be. Instead, I went to the PICRU (post intensive care rehabilitation unit). I didn't look forward to starting over with a new group of nurses—nurses who didn't know me, my family, my situation, how to read my lips and things like that. As disappointed as I was, I was just glad to be back in St. Louis. It was nice to be in a place where my family and friends could visit me again.

The lows: fortunately few and far between, all things considered!

One of the highlights of my time at Shepherd Center was when I had a visit from my friends Adam, Rick and Kelly. As you can imagine, I was quite lonely since I was so far away from all of my family and friends. The visit from my friends meant so much to me and I was so excited to have them come. They drove down Friday, spent the entire day with me on Saturday and a couple more hours with me on Sunday morning before they drove back home. I so enjoyed being able to show them the rehab facility and the different things I'd been up to. This visit really lifted my spirits and it was just what I needed to get me through the next few weeks of rehab before being able to come home.

Despite having to go through a lot of things at rehab that I didn't like for various reason, I always tried to maintain a positive attitude and to be pleasant all of the time. I always thanked the nurses and therapists that cared for me, and I even thanked the techs (nurses aides) that weren't always so nice to me. (A lot of the techs seemed to have bad attitudes, probably from being overworked and under paid.) I knew that all of the things I was learning and going through were for my benefit, so I always tried to participate and be a good sport, even when I didn't really want to. All this being said, I did have a few low or sad times during rehab. Here are a few instances:

One thing that was particularly difficult was having lost all of my physical independence. In one swift move I'd gone from being an independent, self-sufficient young woman to now being no more physically independent than an infant. This was so frustrating and often humiliating, and I didn't like it! Here's an example: One evening when I was getting back to bed I found out that my pants were soaked with urine because the balloon that held my catheter securely in my bladder had ruptured, so the catheter had come out. I was so embarrassed to have basically "wet my pants." 19 year old adults don't wet their pants... backspaceor at least most don't/shouldn't. Of course this wasn't my fault, but I felt so humiliated that all I could do was cry. Fortunately, I had a wonderful nurse that evening that didn't make me feel badly for what had happened. She and my mom worked together to make everything right again.

I didn't often look in the mirror, but when I did it was a rude awakening. I didn't even recognize the person I saw. I felt like an ugly little girl and I wondered if I would ever feel pretty again. Before my accident I'd been a beautiful young woman (although I didn't fully appreciate how pretty I'd actually been until after my accident...after my looks had seriously changed for the worse.) As superficial as it sounds, it was very difficult for me to feel like I looked so awful.

These days my mom tells me that I used to be pretty on the outside, but now I'm pretty on the inside. (She isn't implying that I wasn't pretty on the inside before, or that I'm not pretty on the outside now, but she notices a change in my beauty, as do I.) I know I'm being petty since I could look far worse than I do now, especially considering the fact that I could've been disfigured in my accident, but I have to admit that I do miss looking pretty the way I used to, especially since I never fully appreciated my looks when I had them.

A few pictures of the "pre-accident" me:

The after accident me:

Me in rehab. Even though I didn't feel pretty at all, I always tried to smile in every picture. Whenever I look back at pictures from rehab, I realize how far I've come since then, and that makes me feel happy.

If you notice in all of the pictures of me from rehab, I have something taped to the left side of my glasses. I had double vision after my car accident. The patch on my glasses lens was to hopefully strengthen my eyes so that they would be able to focus together again. As ridiculous a it looked, it made it easier to see if I was only seeing one of everything, instead of two.

Another thing that frustrated me was to never be able to get comfortable. I was always uncomfortable, whether I was lying in bed, or sitting in my wheelchair. Although I was sometimes more comfortable than at other times, I never felt completely comfortable and I was always in some sort of pain or discomfort. My neck muscles were very weak on the right side of my neck (since that's the way my neck broke) so my head always leaned/listed to the right. No one seemed to ever be able to position my head in a way that was comfortable, and this was very frustrating. (My neck muscles have gotten stronger since that time, but it's still impossible for me to hold my head up straight.)

The absolute worst time of day was when my mom would leave for the evening. (I've already said that if I would've had things my way, I would've wanted my mom to stay with me 24/7, but I knew that it was important that she have a little time for herself, especially since she was devoting so much of her time to being with me.) I got so lonely in the evenings, and it was tough to not have someone with me who could help me get comfortable or do things for me that I obviously couldn't do for myself. My mom usually left for her apartment around 7 PM. I always worried about my mom taking a cab to her apartment since the apartment wasn't in the best part of town. So, when she would get safely back to her apartment she would call the telephone in my room and let it ring several times so that I would know that she had gotten home safely. I always felt better when I heard my telephone ring so I knew she was safe.

More to come...

New niece and nephew!

January 2010 has been a wonderful month so far, partly because of the births of my new niece and my new nephew. I love being a part of a large family, and it's so wonderful to have my family grow. I now have nine nieces and five nephews, and two of my sisters are still pregnant, so I will have two more nieces/nephews by the time 2010 is over!

My older sister Annette had her second baby, a little girl named Rebecah Eve earlier this month. Rebecah was born via c-section at 8:20 am on January 7. She weighed 6 pounds and was 18 3/4 inches long. It's been fun to have a few video calls with Annette via Skype so that I can talk to her see Baby Rebecah. Here are a couple pictures of the Coffey family with their newest edition:

(The first picture is of Annette, Joseph, Kimball and Rebecah in the hospital, and the second picture is of Kimball and Rebecah.)

My older sister Kristin had her baby this past Friday, January 22. She had another boy (her fourth) and she named him Aaron Luke. Kristin was induced, and Baby Aaron was born at 2:53 pm. He weighed 7 lbs. 3 oz. and was 19 1/2 inches long. Here are a few pictures of Kristin and her new baby:

Although I would love to be a mother and have children of my own, this isn't possible. However, I feel so blessed to be able to be an aunt. I love my nieces and nephews so much, and it's always a joy to be around them.

More about rehab...

The patient census at Shepherd changed often, but for the most part when I was at Shepherd there were usually between eight and 10 patients in the young adult group. (There was an adult group of patients and a young adult group. Shepherd didn't really accept patients who were younger than 12.) I was the only girl and the only quadriplegic for most of my seven weeks at Shepherd. The rest of the patients in the teenage group were boys who ranged in age from about 14 to 17. They were injured in various ways; one was injured in a bicycle accident, another was injured by a gunshot wound and I know there was at least one other car accident. Another girl was admitted about a week before I went home, and she was a C1 quadriplegic (that's as paralyzed as you can get...I am a C2). She had been stabbed by her boyfriend. She was 21 and had a little girl; I remember feeling so badly for her and her daughter.

My favorite part of the day at rehab was when the mail cart came through...usually between 4 and 5 PM. My family and friends were so good about remembering me and keeping in touch with me. I got lots of mail/packages, and it made me so happy to have my mom read the cards and letters to me. I also had a speaker telephone in my room, and although I couldn't talk loudly enough for my friends/family to hear me, I could talk to them through my mom, and hear their responses. (I would mouth things to my mom for her to tell the person on the other end of the phone, so I was able to talk to people that called in a roundabout.) The sound of their voices was so heartwarming!

I got so sick of eating the same hospital food every week. I was still getting supplemental feedings via my feeding tube every night, so if the food on my dinner tray didn't appeal to me, then I just ate however much or little I wanted, and I knew that I wouldn't be under nurished with the nightly tube feedings.

This leads me to another part of the day that always cheered me. Like clockwork, every evening around 7 PM, a lady would come down the hall with a cart of snacks and yell, "snack cart!" At first I wasn't really interested in eating anything from the snack cart, but as my appetite returned, I looked forward to getting some sort of treat...usually chips. Knowing that the snack cart would come around every evening gave me something to look forward to, especially if dinner hadn't been appealing!

I had an hour of physical therapy and an hour of occupational therapy every weekday. My mom and I were taught different stretches for my arms and legs called "range of motion" exercises that we needed to do on a daily basis so that my muscles would stay limber and not get contracted. Another thing that I'd sometimes do during my hour of occupational therapy would be to paint with my mouth. The purpose of this was to be a form of exercise for my neck so that I could gain more strength in my weak neck muscles. A paint brush was taped to a mouth stick (something I held in my mouth) and then I would gently glide the paint brush over paper. My occupational therapist obviously had to be right there with me so that she could reposition the easel that held my paper, and also dip my paint brush when it ran out of paint. The pictures I painted were quite amateur, but painting did force me to stretch my weak neck muscles. My occupational therapist, Rashida, and myself with one of the pictures I painted

My occupational therapist, Rashida, and myself with one of the pictures I painted.

Painting of Shepherd Center's "helping hands" logo (left).

Recreational therapy was another thing I was required to participate in while at Shepherd Center. The purpose of this was to take outings into the community so that the patients could learn how to tackle the logistics of go out in public as a disabled person, which is easier said than done. The first outing I took was to the mall, and had lunch in the food court. After lunch I went to see Cheaper by the Dozen at the mall's movie theater. My mom came with me, as well as my entourage of nurses and therapists. (It truly was an entourage, because five or six Shepherd employees accompanied my mom and me.)

I hated my outing! I wasn't used to being stared at and being so different, so it was a horrible feeling to have all eyes on me. It wasn't until I was in the dark movie theater that I started to relax. I realized that this was my new reality, so I better get used to it, but I didn't like it, and was so relieved to get back to my room at Shepherd. 

My first venture into the world as a disabled person.

A new church calling

This past Sunday I was called to be the editor of the weekly bulletin at church. This calling (or responsibility) is in addition to writing the monthly newsletter for my ward (or congregation). I've been doing the newsletter for the past three years, so I've got it down to a science since I've been doing it so long.

I look forward to taking on this new responsibility because I know that I will be able to do a good job, and it won't be long before I have this down to a science as well! Although there are a lot of church callings that would be difficult for me to do, this is something that is right up my alley, so I'm pleased to be able to serve in this way. (And I'm so relieved that I wasn't called to teach again... this would be a calling I would dread!)