Walking Spirit

This week is Everyone Counts week at Immaculate Heart of Mary, a local catholic school in Indianapolis. The focus of the week is to educate the students about people with disabilities. I was asked by one of the coordinators to speak to the 8th grade students about my story and experiences.

Yesterday I spoke to the students in the church at IMH. I'm happy to report that I did not burst into flames upon entering the church! (That would have been quite ironic!) I sat in the priest's chair (again checking for spontaneous flames) just below the altar. As the students filed in their teachers told them that it was alright if they wanted to sit on the floor to get closer to me. To my surprise most of the girls chose to sit on the floor while most of the boys headed for the pews! (While this is not important, I choose to mention it because it was exactly the opposite of what I expected.)

When I had arrived I was a little concerned about how much detail I should go into with the students about my injuries. I spoke about this with the coordinators before the students came in and we decided that I should be candid with them about what my condition was after the accident. As I spoke about what had happened, and what my condition was when I woke up, I watched their faces to see the reactions. I saw looks of shock, sympathy, and in some cases a little touch of fear. As I continued to speak the looks on their faces changed as they became more comfortable with what I was telling them.

I enjoy speaking immensely, but it's much more fun when there are questions, and this audience did not disappoint! The coordinators mentioned that, based on previous speakers, the students might not ask many questions. However, after I had gotten through the initial part of the story first one student raised a hand, then another, and then there was a flood of questions!

The questions make the speech much more enjoyable for me and (I think) for the audience. Because I know that they are interested and that they are getting what they want to learn from the experience. One danger though is that sometimes the questions can steer the conversation off course. After I had spoke for about an hour the realization hit me that we had spent the whole time talking about me! (Which is, of course, one of my favorite topics!) Remember, the focus for the week is "everyone counts". Knowing that we were running out of time, one of the coordinators came to my rescue and announced that we would only take two more questions. Once those questions were answered I was able to steer the conversation back to the main point.

It was important to me that the students learn about people with disabilities as opposed to Jeremy with a disability. To wrap up I took the opportunity to stress to the students that it's ok to ask questions. That it's alright to offer assistance as long as they are not forcing their assistance on someone else. One point that I wish I had stated, but I hope they gathered from the conversation, is that people with disabilities can be functional members of society. Of course, my final point to them, was that in our lives we will all be faced with a disability (whether it is our own, or the disability of a loved one) and that a disability should not be seen as a restriction, but rather a situation to be embraced and to adapt to it to move forward with life rather than giving up.

I'm not sure if I've ever talked about this, but if I have, I apologize for repeating myself. After I woke up in the hospital, and all of the heroine based drugs had worked their way out of my system, I finally had some understanding of what had happened to me. However, I still found it difficult to accept why my legs had to be amputated.

I felt like some kind of mistake had been made. That if I had been awake, perhaps they might have been able to save my legs. There was no logical reason for me to feel this way, but I had no comprehension of how bad the damage truly was.

People who saw me in the first few days after the accident would describe what I looked like. Even now, when I talk to someone who I haven't spoken with for a while they will reminisce about how unrecognizable I was. Most people focus on my head and face. I know it's hard to believe (because I'm still so damn good looking! :) ) but the damage to my face was severe. People say that my head had swelled up to the size of a beach ball and that my face, quite literally, had no features. Even my Mom said that she wouldn't have known that it was me in the hospital bed if the doctors hadn't told her.

People also would describe the appearance of my hospital room. How it was hard to see me in the bed because of all of the bags of medicine and other equipment that was surrounding me. Dad said that when I was on dialysis it looked like something out of a science fiction movie. I was so intrigued by all of this that I asked if anyone had taken pictures. Unfortunately no one had.

I know it's morbid to think of taking pictures of someone while they are in such a horrible condition, but I really wanted to understand what everyone else around me had seen and dealt with while I was in the coma. Also, I needed some tangible evidence that there was no alternative to the amputations. When the damage to my head and face was described to me I couldn't believe it. Sure, when I woke up my jaw was wired shut, but other than that I looked fine and my face was one of the few parts of my body that didn't hurt! (With the exception of my jaw, which only hurt when I would try to yawn. That was unbearable!)

You may be wondering why I keep talking about the damage to my face when I opened up talking about how I found it difficult to accept why my legs had to be amputated. I promise, that will become clear in a moment. The damage to my face healed on it's own. Some might say that this was miraculous. The damage was so severe that facial reconstruction surgery was planned. As it was described to me, I would have received the surgery that can be seen in the movie Face Off.

They were going to peel my face back and implant metal plates to hold my skull together. Then the plastic surgeons, who had studied my family's facial structures would do there best to make me look something like myself again. (I can't imagine what the scars would have looked like!) However, because I was so sick with infection the doctors could not safely perform the surgery when planned. When I was finally healthy enough for the surgery the doctors discovered that all of the bones had stayed exactly where they were supposed to and had healed perfectly! No facial reconstruction was needed.

I learned of this while I was still in the burn unit. While I was happy that I had been spared the horrible surgery described above, I was angered that my legs had been amputated. I wanted to believe that I had some supernatural healing ability and that, had the doctors left my legs alone, they too would have healed perfectly. I had all of these descriptions of the damage to my face. The descriptions of my external appearance that I mentioned above, and the descriptions of the x-rays which showed a spider web of fractures across my skull that I was told looked like a broken windshield! I had hardly any description of the damage to my legs.

Very few people saw how badly I had been burned, as my legs were already bandaged by the time visitors were allowed to see me. To the best of my knowledge my Sister is the only person (other than medical staff) who truly saw the horror that the fire had wrought upon my body. The burns were somehow limited to my lower legs and right thigh. As I said, I was convinced that if they hadn't done anything to my legs they would have healed on their own. My Sister's description of the damage, while disturbing, was still not gruesome enough for me to understand. Overtime I came to accept that the amputations were medically necessary, but I still needed some tangible proof to put my lingering doubts to rest.

I knew that the hospital had taken pictures and I had asked my Physical Therapist if I could see them on several occasions. Of course, she did not have immediate access to them so that wasn't a very easy request for her to fulfill. About six months ago she did finally get access to two pictures and let me see them. These pictures were difficult to look at, and they did put my doubts to rest, but they really didn't show much. Last week I found myself presented with the opportunity to see more. These new pictures showed the damage in far more detail than what I had previously seen. (I would post them here, but I don't want to be responsible for people vomiting on their keyboards!) There is now no doubt in my mind that, even if I had the Cheerleader from Heroes power of regeneration, my legs would never have been functional again.

The fire wrecked my legs so completely that, had they been left alone, they would have hung lifeless from my body for the rest of my days. (Which would have probably been very short due to infection from the dead limbs.) Given the choice between spending my life in a wheelchair with useless legs, or spending some of my time in a wheelchair and having detachable legs (prosthetics)to escape the wheelchair, I would have chosen the latter. Of course, I was not able to make that decision because I was in a medically-induced coma at the time. Mom and Dad were faced with that horrible choice. Thank God they made the right decision!

Last Tuesday night and Wednesday morning Indiana had the 6th largest snowfall in it's history. When I went to bed that night there was about 2 inches of snow on the ground, when I woke up in the morning there was at least a foot! I had a lunch appointment that day, but it was obvious that I wasn't getting my car out of the garage. The snow in the driveway was higher than the bumper on my car!

Rescheduling my lunch appointment was no big deal, and I had been to the grocery store a few days earlier, so I hunkered down to wait for the thaw. After the snow stopped I opened my garage to see how things looked outside. It was pretty clear that, unless the driveway got shoveled, I wouldn't be going anywhere for a while. In the past, before the accident, I would have loved a day like this! Having a reason to call off work that couldn't be held against me. (Of course, being in the hospitality industry, my boss would probably have called me the night before and had me spend the night at the hotel so that I would already be at work in the morning.) In those pre-accident days I would have been out in the snow, having a snowball fight with friends, shoveling the driveway, or just walking in the snow, enjoying the view of the world covered with white.

Now, I get the view from my window. Speaking of the view from my window, about an hour after I'd been in the garage I went into my office to check my email. I heard a scraping noise, which drew my attention to the window. What I saw was my neighbor to the east, and a person that I didn't recognize, shoveling my driveway. It appeared that they were almost done, which was amazing, given the amount of snow and the short amount of time since the last time I looked!

I decided to open the garage and say hello and thank you. When I opened the door I discovered that in addition to my neighbor from the house to the east and the stranger, my neighbor from the west and another person I did not know were also helping shovel my walk. The two men I didn't know were from houses just down the street. The four of them had only been working on the driveway for ten minutes and they already had it clear!

A few days later I had the opportunity to repay the favor to my neighbor to the east. I awoke to some very quiet thumping noises and finally decided to open the garage and see what was going on outside. I discovered my neighbor banging on ice that had covered her garage door. (Which is odd because none of the other garage doors in the neighborhood had ice problems. Either there's a problem with her gutter, or her garage door is a geographic oddity!) I loaned her a chisel, but she wasn't able to get at all of the ice, so I gave her a ride to work.

Lately I've felt less connected to the world. (Largely because the loss of my legs and the current weather patterns don't go well together. See the last update for more on that topic.) Yet, somehow, this snow storm actually connected me more with my neighbors. I also find this humorous, because when I lived in apartments I never wanted to know my neighbors. That was a trait that I picked up from a friend of mine. (You know who you are.) (If you don't know who you are, here's a clue, we lived in the same apartment complex in Corpus Christi.) Good neighbors are important, and I'm thankful that I have them!