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!

The hotel incident reminded me that Matt Rolloff has/had a company that sells things to hotels that are for people with disabilities. I don't know him personally, but he is on the TV show Little People, Big World. I thought it was a genius idea for him to start a business selling things that he needs when he travels. His needs are different than yours as he suffers from a type of dwarfism. I bet there are a significant number of hotels that could not help you with adaptive products when you stay with them.
It's always so nice to visit with you Jeremy at your blog. Hope to see you tomorrow. Love you much. Butler is making me nervous.
What a full month! I do think that Chicago in March is not for the faint of heart... And I believe I detect a bit of the Calvin mindset in you (that's not all bad, of course.)
Glad you are part of the mayor's council on disability; you have experience on both sides, as the shower chair problem emphasized, which good for everyone.
I know this comment is late...but sounds like March was awesome. Loved your post, your words are so comfortable and having a good conversation with you :-)
-That last one was from me, Violet!
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