Wednesday, March 31, 2010


The month of March

This year March has truly come in like a lion and out like a lamb. I think we've seen three out of the four seasons between March 1st and today! In fact, I fully intended to get this posted yesterday, but the weather was so beautiful that I couldn't bring myself to sit inside long enough to work on it. It's also been an extremely busy month for me. It began with Madeline's birthday, included several speeches, my birthday, a few new responsibilities, and ended with a trip to Chicago. (Which was kind of an extension of Madeline's birthday so I guess you could say my month ended the way it began!)

I love the fact that Madeline's birthday arrives 10 days before mine! She was born on March 3rd, 2001. I had moved back to Indianapolis just two weeks before, and was still living at the Indianapolis Marriott Downtown, where I also worked at the time. I had worked a late night with the third shift housekeeping team as we prepared the hotel for it's grand opening. I had only been asleep for a few hours when Dad called to tell me that Sarah was going into labor. I threw on some clothes, ran down to the front desk to tell them that I would not be on time for my shift, and then raced to the hospital. I arrived in time to see my Sister, who had just been given an epidural, so she was feeling great. We spent a few moments together and then I went out to the waiting room where I slept peacefully in a very uncomfortable chair until my family woke me up again to tell me that it was time to meet this precious little child who would bring so much joy to all of our lives!

In our family we have a tradition that you get to pick whatever meal you want for your birthday dinner. For years I have chosen Mom's Fettuccini Alfredo. Several years ago, to my surprise, Madeline began choosing the same dish! So, for the last several years I've gotten to have my favorite meal on Madeline's birthday and then again 10 days later on mine; what a treat! This year Madeline changed it up on me, with an order for Manicotti, which is also a great dish, and it made the Fettuccini on my birthday even more special. (For the record, though she denies it, I still think her Mother had something to do with the change in the menu!) :)

the day after Madeline's birthday celebration I was part of a panel discussion at the University of Indianapolis about the psychological impact of an acquired disability. After that, I drove up to Purdue Calumet, in Hammond Indiana, where I gave a speech to 300 high school students with mild disabilities who are getting ready to transition into college or the work force. Hammond Indiana is just outside of Chicago, and I want to point out that last summer I was stressing over driving that kind of distance on my own. Dad asked if I wanted him to come to Hammond with me, and I think he was kind of surprised when I said no, but I wanted to do the drive on my own. I was pretty nervous about this speech because it was the first time that I used a PowerPoint presentation. I became even more nervous when I realized that the presentation would be on two screens that were behind me, so I wouldn't be able to see it to be sure that I was on track with the presentation! In the end, the speech worked out great, and for the most part I managed to stick to the plan!

I had been sick for most of the week leading up to Madeline's birthday, and doing all of that speaking, plus the travel definitely took a toll on me. I had insomnia the night before my speech at Purdue Calumet, which meant that I was running on fumes when it came time to perform. When the speech was over my voice was shot, and it progressively got worse over the course of the next few days. Luckily I had about a week before my next speaking engagement.

During that week my voice recovered and I got to enjoy my own birthday celebration at Mom and Dad's. I had a very calm birthday. No big parties, just a beautiful dinner with my family and then a couple friends came over to my house and we played cribbage until rather late in the night. Made even later by the spring time change! It's strange, looking back, when I turned 30 my friends took me out to Broad Ripple and...well, to be honest I don't remember much of that night. Since the accident all of my birthday's have been memorable evenings spent around a dinner table, or gathered in another area of the house, visiting with close friends and family. I'm not complaining, that's exactly the way it should be! After experiencing what I have, you want to spend the important days of the year with the people you are closest too! And, for those of you who are wondering, the best gift of all was Madeline's. She took me to see Percy Jackson and the Olympians: The Lightning Thief. She even handled all of the money at the theatre, from paying for the tickets to buying the snacks!

In addition to the big speech at the beginning of the month I have also spoken at several elementary schools. Many of the elementary schools in the Indianapolis area have embraced the month of March as Disability Awareness Month and really put a lot of effort into programming to educate their students about disabilities and inclusion. I think it's fantastic! I only point out the elementary schools because, as of yet, I've only spoken to one middle school and no high schools. I'm sure they are doing something, but I have very little knowledge of how the secondary schools (I think that's the right term) recognized Disability Awareness Month. I did several of these speeches with the Indianapolis Resource Center for Independent Living (IRCIL). It was a new experience for me to present with another person with a disability. This gave the children the opportunity to learn from people with similar, but very different, disabilities with different types of independence. Very neat!

I've become much more involved with IRCIL in the past few months. During the month I became a member of IRCIL's Board of Director's. This is a very new experience for me. When I attended my first board meeting as a member I found myself looking around the room wondering when the adults were going to realize that I didn't belong there. (Then I remembered that I'm now half way to 70, as both my Uncle Mike and my dear friend Kelly Clements pointed out on March 13th!) Still, I find it fascinating that 4 and a half years ago I was a hotel manager laying in a hospital bed, having just learned that my legs were gone, wondering if I would ever return to work. How wild is life??? My first responsibility as a board member is to lead the "Team Recruitment" effort for IRCIL's major fundraiser, the Wheel-A-Thon. More on that in a future post, for now, if you are at all interested in creating a team, click here (our goal is to get 12 or more teams to sign up with a fundraising goal of at least $400.00 per team). You can also either join or donate through my team, Rebellion on Wheels (get the Star Wars reference?), by clicking on my team name.

In addition to my new responsibilities with IRCIL I have also managed to talk myself into responsibility for the new website content committee for the Mayor's Advisory Council on Disability (MACD). At a recent MACD EC (Executive Committee) meeting, I brought up the fact that the MACD website doesn't provide much I'm co-chair of the newly formed committee. (Funny how that happens, huh?) So far it's actually been kind of fun, but we're just getting our thoughts together, so I'm not providing a link until we've made some progress.

As I mentioned at the beginning, in a way, the month of March ended for me in a very similar way to how it began. One of Madeline's birthday presents was a gift card to the American Girl store in Chicago. This past Monday we (Mom, Dad, Sarah, Madeline, and I) drove to Chicago so that Madeline could make use of her present. (At the beginning we celebrated Madeline's birthday and then I drove to Hammond, very near Chicago.) Of course, the activities were entirely different! Very shortly after arriving at the hotel we went to the American Girl store, where Madeline picked out a "Just Like Me" doll that truly looks just like her. Sadly, I was unable to find a doll that looks just like me, so I left empty handed. :(

Out of sheer stubbornness I decided to do the trip to Water Tower (home of American Girl) without bringing my wheelchair along. I would have been fine, but after sitting in the car for three hours with my legs on, my residual limbs had begun to shrink. I lost suction on my left leg to the point that the socket would not stay attached. We had lunch before going to American Girl, so I took the leg off during that period. I'm sure it was an unusual site for people to see a young man in the food court eating with his leg leaning against the chair beside him! When we were done I reattached the leg and the suction held, but I knew it wouldn't last. When we were done at the American Girl store Dad went to get the car so that I could go back to the hotel. Mom, Sarah, and Madeline stayed to explore the mall a bit more. I would have enjoyed looking at some of the other shops, and from an endurance standpoint I think I could have done it, but the entire trip to Water Tower had been nerve wracking and frustrating for me. I felt it was best to go back to the hotel to rest where I could take my legs off for a while.

When we returned to the hotel I discovered that the shower chair in my room, which I'd had to request after check in, was the wrong type of chair. It was small, yet it didn't fit in the tub, and it didn't have a back rest. It would have been very dangerous for me to use, so I called the front desk and asked for a housekeeping, maintenance, or rooms division department head to come to my room. This actually led to a great conversation with a young manager about disability awareness and the hospitality industry in general. (It kind of made me miss the old days...but only for a moment.) The conversation also led to the correct type of shower bench being moved to my room, which ultimately led to a very relaxing shower!

After the great shower my family and I went out to dinner with my good friend (and old competitor) Jim Goodman, his wife Jennie, and their one year old Anna. It was fantastic to see Jim, Jennie, and Anna. We enjoyed some great food and company. It was a perfect end to what, for me, had been kind of a harrowing day.

On Tuesday we went to the Museum of Science and Industry, which really is fantastic. I think we probably could have spent the whole day there...if we had arrived early and had the entire day available. As it was we only had a few hours, and probably about a half hour of that was spent standing in line, where I actually ran into a student (and family) from the elementary school that I had spoken to last week! While standing (or sitting in my case) in line we also bumped into a family from our church. (Small world, huh?) Knowing that the museum would be more than I can handle on my legs I decided to use the wheelchair, which is more comfortable, but it's not much fun to be at that eye level in a crowd! We had a great time, but probably only saw about 25% (probably less) of the museum before we had to leave.

One of the most fascinating things that I saw there was a prosthetic for a man who has bilateral (both legs) amputations at mid thigh, which means his amputations were much higher than mine! The prosthetic was made for him to climb mountains. It's actually very short and has no knee. The mountain climber said that he realized that the prosthetic knees were slowing him down on the climb! Fascinating, it's not something that I'm all that interested in trying, but it's good to know it's an option!

We got home Tuesday night and have had great weather ever since. As I said at the start, I fully intended to write this post yesterday, but the weather was so wonderful that I spent the afternoon and evening on the deck. I also fully intended to finish this post much earlier today, but once again, the weather enticed me away from the computer. I think we've got a beautiful summer headed our way!

Saturday, March 13, 2010



Please join me in wishing Jeremy a happy birthday! We love you!

October 2010 -- Jeremy's Walk -- Jeremy with the Butler University cheerleaders

Tuesday, March 09, 2010


Walking Unassisted

Walking without the crutches has always seemed like too much to hope for. My first Prosthetist didn't think it would really be possible. My Physical Therapist has seen videos of bi-lateral above knee amputees walking unassisted (without crutches or canes) but I don't think she ever thought it was a realistic goal for me. My new Prosthetist believes that I'll be able to walk without the crutches by the end of the year. Personally, I don't see how it could be safe, but I have seen the videos of people like me walking wherever they want without any kind of assistance what-so-ever.

When I received my new sockets I decided to take a few steps in the parallel bars at my Prosthetists office without holding on, just to see if it was possible. His set of parallel bars aren't very long, so I was only able to take about three steps. I did it, but my left hip, which is my weaker side, gave out and made it very difficult for me to stay balanced. My thoughts at that point were "my Prosthetist is nuts! Sure I can do it, but it will never be functional." However, when my Prosthetist saw me take those three steps he was amazed that I was able to do that much, considering I had only just received the new sockets. That was back in October.

What's so important about the sockets is the way they are aligned and the amount of support they give me. When you walk with crutches you are supposed to alternate your crutches as you walk. It should be right foot and left crutch, then left foot and right crutch. Does that make sense? Well, with my old set of sockets, which I had for about three years, I couldn't alternate my crutches. I tried, over and over again, and I could alternate them a little bit, but it never felt comfortable or stable. I found that I could move much easier if I used both crutches every time I stepped with my left foot. The real draw back to that was that I was transferring my weight on the crutches instead of my legs. What I learned when I switched Prosthetists and received the new sockets was that the old sockets were not aligned properly. The poor alignment was the reason that I couldn't alternate my crutches while walking!

Why is alternating the crutches so important? Because that movement, which is more natural, also allowed me to stop using the crutches for weight transfer, which has forced me to trust my legs. Now I alternate my crutches with every step and really only use them for balance. As I was walking at church on Sunday I started to pay attention to how little I was really using my crutches, so I decided to take a risk. I lifted both crutches off the ground and walked forward without using them. To my surprise, I didn't fall! My left hip still gave a little, but not enough to make me lose my balance.

Some of the people at the church saw it and told me how amazed they were. This gave me some much needed positive reinforcement, so I began trying it more and more. To the point that I may have been showing off a bit, but hey, it was good practice! Ultimately I walked about 20 to 25 feet without using the crutches! It was very difficult, partly because I still had the crutches in my hands and, muscle memory being what it is, my arms really wanted to walk with them. It takes a lot of concentration to keep my balance and while I felt stable, I didn't really feel in control. I can walk forward, but I can't turn or stop yet. Which means that I have some decisions to make.

Do I want to make this a real goal, instead of just something to play with every once in awhile? Do I want to put forth the physical effort that it will take to make walking without crutches functional? (To me functional means that I would walk this way in the community, I would be stable, safe, comfortable, and have the ability to alter speeds.)

I can walk with one crutch, but I don't do it very often. Other than at church the only time that I have walked with one crutch in the community was when I walked into a post office a few months ago. While standing in line at the post office I learned that even though I could walk with one crutch, I still needed the second crutch to stand comfortably. While standing with one crutch my back began to hurt because I wasn't able to easily shift my weight. This presents a tremendous obstacle to leaving the one crutch behind, I can't imagine how I would stand for any length of time without any crutches!

I am very happy with the way that I move now. If I can get to where I can walk with one crutch in the community on a regular basis it will open up the ability to carry things in my left hand, which would be very helpful. If I can walk with no crutches I might also have the ability to carry things that require two hands. (Currently I'm happy to have other people help me with large objects!) Would the ability to walk without crutches also give me the ability to dance again? (Doubtful that I would be very good, but slow dances might be ok.)

It's interesting, as my confidence grows each step seems to open up new opportunities, but these opportunities always come with new challenges as well. I have to ask myself if the benefits are worth the challenges. So far the answer has always been yes, but this is completely new territory. It is possible that as I become more comfortable with one crutch, and continue to "play" with walking without the crutches thing will happen naturally. That is the slower road and most likely will not allow me to reach the full potential that a focused effort would. At this point I have no answer as to how I will progress, but it is definitely a goal that I am considering. Only time will tell...

Tuesday, March 02, 2010



If you've watched the weather then you might have heard that Indiana, along with most of the country, had some record snowfalls and cold temperatures during the month of February. I've been pretty lucky to avoid being out in it much, but I still had a very active month. I had several speaking engagements and committee meetings that kept me busy, but I also found time to take Madeline to our Church's Mardi Gras Party. Her Mom wasn't feeling well, so she asked me to take her, and of course I jumped at the chance. (Figuratively, of course, man I would love to be able to really jump again!) That's the two of us in the picture above. You'll notice that I'm currently in "winter mode" which means that I tend to have a light beard and I haven't had my hair cut since October. The longer hair thing is a new experiment, because I don't really feel the need to maintain the "high and tight" professional hair cut right now. (Of course, the feathers have nothing to do with "winter mode" and everything to do with Mardi Gras!)

In the last month I've spoken to the fourth grade students at an elementary school in Noblesville, the 8th grade students at Immacculate Heart of Mary, and was part of a panel discussion about the psychological impacts of an acquired disability for a Physical Therapy class at UIndy. In between those events I also attended my regular Mayor's Advisory Council on Disability meetings, which includes two meetings now that I'm on the executive committee, and attended a meeting of the Board of Directors for the Indianapolis Resource Center for Independent Living (IRCIL). I have applied to join their Board, so I thought it would be a good idea to check it out.

Somehow the heavy snowfalls seemed to line up with days when I didn't need to leave the house. I kept an eye on the weather and would try to do my grocery shopping before the heavy stuff came so that I could enjoy being snowed in. I also managed to stay pretty healthy, until the last weekend. Then, somehow, it caught up with me! I got sick. I blame my sister. I blame her because she wasn't feeling well earlier in the month, so it has to be her fault, right? I know better, but what's the point of having a sibling if you can't blame her for making you sick? I remember when we were kids and she had the chicken pox. She got to stay home from school, so I chased her around trying to make her give me the chicken pox so that I could stay home too. I don't think she had told me about the awful itching that came along with it, so I'm pretty sure it was all part of her plan to give me the chicken pox in the first place! (Yes, I blame her for giving me the chicken pox, even though I was the one chasing her, that's a siblings right!) Yet again I have gone off on a bunny trail(most likely brought on by decongestants), so let me get back to the point. I got sick.

I try so hard to keep things positive, but when I get sick that becomes almost impossible. Why? Because when I'm sick I turn into this pathetic guy who wants to whine about everything and wants someone to baby him. The one big problem with that is that I'm single and live with two cats, who obviously could care less about what I want. When I'm sick everything becomes harder, every task takes longer, and it seems like when I'm finally comfortable on the couch I have to get back up to deal with something that I forgot while I was up the first time! It's when I'm sick that the fact that I'm single becomes extremely depressing. Every one deserves that special someone who will put up with them and take care of them when they feel like death warmed over, which is how I felt Thursday, Friday, Saturday, and most of Sunday. I'm still not 100%, but at least today I feel like I can do more than watch TV.

That was the whiny part, which has been aching to get out, so now it's time to look at the positives. I am very lucky that I have friends and family who do care. My old roommate brought me some much needed decongestants and movies to watch. Mom and Dad came by to help with a few things around the house on Sunday, and Mom brought breakfast over on Monday. The nice thing about being single when you're sick, is that you don't have to worry about anyone else seeing you when you're really gross! Luckily the timing worked in my favor again because, other than a meeting last Friday morning, I didn't have to be anywhere over the weekend, and I have a pretty light week until Thursday and Friday.

Wednesday night, the 3rd, is Madeline's birthday 9th birthday, and I plan to be 100% healthy by then! Thursday I have another panel discussion at UIndy, and then I'm driving up to Hammond Indiana for a speech on Friday. Friday morning I'll be giving the keynote speech at the Transition Conference at Purdue Calumet. It's an audience of approximately 300 high school students, many of whom have mild disabilities, who are about to transition into either college, or the work force. I'm honored that they want to hear my story!

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