You might wonder why I chose the Olympic motto of "swifter, higher, stronger" as my title. I thought that with the London Olympics on the horizon (not to mention thoughts of some very dear English friends), it was an appropriate way to describe how I have been feeling and what I have been doing. In many ways I feel that I am, on my own level and at my own pace, getting citius-er, altius-er, and especially fortius-er.
Going back just a couple of weeks, here's what's been happening. Two weeks ago we flew to Boston to visit Matthew and his family. I was very excited to go--any time with them is an event to look forward to--but I was nervous about flying. Not that I worry about my safety. I have flown enough not to worry about that. But I didn't know how I would deal with security or manage my medical appendage (my feeding machine) on the plane. I was also concerned about the amount of walking I would have to do if the gates were far from the lobby or baggage return, which is so often the case. So we called TSA before the flight to ask what we might expect when we got to the security line. Now, all of us who have flown have experienced the security procedures at airports, and I think that by now even though most of us have accepted the experience as a necessary irritation, we have come to expect a little delay and perhaps some snippiness or lack of empathy on the part of the inspectors. That's okay. I wouldn't want to go through what they go through either. I was imagining and anticipating all kinds of trouble because my feeding machine is difficult to detach and we were carrying liquid food, and I thought all of that might be a problem to bring through the inspection line. But the woman on the phone said that what I was bringing was approved medical equipment and I should have no problem. And in fact, she recommended that we approach the captain of the inspecting team on duty and ask for assistance. So that's what we did. I did use a wheelchair, not that I normally do, but because we had the medical stuff to carry as well as our normal carry-ons, it seemed like the prudent choice. And it was. They took us through the line right away, and treated us with considerable courtesy and understanding. They patted me down and wanded me and did not require that I remove my shoes. When the agent said that he now needed to inspect the chair (even though it was theirs), and I said that I could stand while he did that, he said no, that he could do it while I was sitting. Carol wrote in her last blog entry that "the TSA people and airline personnel were all very helpful," but I would (and I think I do) express more appreciation for how well they treated us. That was true in Boston as well. It's easy to grumble about the security experience at airports (and often justified too), but this was a case where the opposite is true, and I'm happy to be able to report it.
While we were at Matthew's house we enjoyed ourselves a lot. Who couldn't, with such an adorable toddler to play with and watch develop. Dylan is making daily, maybe hourly, strides in his ability to speak. He understands everything said to him, and he can identify all kinds of items in the stories we all read to him. (Can you show me the sheep? What does the cat say? Which balloon is red? And then, which animal is that? Who says bow-wow? Which one is the green star?) But though he hears them and understands them, he doesn't speak them at the same level. This is normal linguistic development in children, But even in the short time we were there we witnessed remarkable leaps in that direction. I can't tell you how much more he was speaking, but I can say he was speaking a lot more. For some time he had been saying "Mommy" quite clearly, but it seemed that he used "Mommy" to mean either mommy or daddy, so Matthew and Celeste were trying to get him to say "Daddy" and to use the two names appropriately. By the time we were there that goal had been pretty much accomplished. So we'd see Dylan roaming around the house, and when he saw one of his parents he would announce "Mommy" or "Dada" (he hadn't quite gotten "Daddy," but that's okay). And he has a lot of words that no one can quite figure out, but he babbles them anyway, not appearing to be terribly bothered that at that moment no one understands him. Well, a few days into our visit he started saying "Gaga," which Matthew and Celeste said was a new word and they didn't know yet what he was referring to. At some time he would point to whatever he was talking about, and they'd figure it out. I said to Carol that since he was saying "Gaga," we should teach him "Lady." On the day we were leaving and saying goodbye (he was going for a nap and we were headed for the airport), Celeste asked him if he could say goodbye (which he sort of could), and could he wave to us (which he did). Then she said "Where's Mommy?" and he pointed to her. And then, "Where's Daddy?", and again he pointed correctly to Matthew. Then she said, "And where is Gaga?" Dylan pointed to Carol. Gaga was Grandma. We hadn't known. And then he pointed to me. I too was Gaga, which makes perfect sense since interior sounds in words are the hardest for children to learn to incorporate into newer and longer words. So Gaga was either Grandma or Grandpa, and I pointed out that now it was even more important that he learn to say "Lady" as a means of distinguishing which Gaga he was talking about. I can't wait until we see him again and remind him of who we are, and hear him call us Gaga and Gaga again.
I don't care how sick you are or how serious your condition is. An experience like that makes you altius-er without any doubt.
Matthew has recently changed jobs and now he works in the office of the general counsel at Harvard, and he can walk to work instead of having to commute as he had done before. The walk is about a mile from his house, so the combination of convenience and good exercise is a nice feature of the change. He was out of the office for an appointment on Thursday morning, and planning on being home at lunch, after which he would return to the office for the rest of the day. Carol said that she'd like to walk down with him to see the place, and they asked if I wanted to come along. Well, a mile down and another mile back made me pause and take stock. The last time I tried to walk a distance (this was probably in March or April) I lasted about a quarter or a third of a mile, and then I was done. So I was apprehensive. If I went, I would certainly walk slower than Matthew and Carol, and that might influence their attitude about whether I should come along. But I decided that we had been dancing more, and I had been feeling better, and if I started and felt I couldn't go the whole way, I could sit down on a bench and wait until Carol came back and walk the rest of the way home after my rest. Or I could call a cab. Or any number of possible solutions--so I decided to go. And I'm glad I did. The office is really just an office, but the mile down and the mile back was an accomplishment beyond what I had expected. Yes, I was tired, and when we got back I settled into a comfortable chair and rewarded myself with a nice long rest. I had done it: two miles (possibly two point two--Matthew thinks the distance is a mile or a mile and a tenth) with a break in the middle. In actuality I don't think my pace required them to go much slower. I certainly felt both citius-er and fortius-er.
A great time in Cambridge, and plans for another visit in August. By then Dylan will be quoting Shakespeare and I will be running marathons.
We got home from Boston on Friday evening, and recovered somewhat from the trip on Saturday. Then on Sunday we drove to Columbus (about two and a half hours) so that I could participate in a training program for some work that I had been doing before I got sick. For about two years I had served on several visiting teams that observed schools and recommended the level of accreditation they were entitled to. I enjoyed that work (all volunteer, as so much of adjunct educational work is), and regretted that it was among the activities I had to give up, missing many opportunities during the winter and spring. My team leader had recommended that I take the training to become a leader myself, and when that training was announced for early June, I decided to go for it. I didn't know how I would do, but I was willing to take the chance.
The training went fine, but we had one personal experience that really suggests progress for me. I wear this feeding machine and carry it with me wherever I go. It provides nearly all my nutrition, since even though I have been getting better and better in many ways, I still find eating by mouth to be a challenge in some ways. One of those ways is that I just can't consume very much at one time. I simply can't overeat. If I do I get sick, and it just isn't worth it. So we run the machine pretty much around the clock. The feeding rate that I am comfortable with leads to a delivery of about 1800 calories a day, not quite enough for me to maintain my weight, even though I appear to be getting all the vitamins and minerals a person needs. It's really like a diet of adult-strength baby formula. What I need to do is increase my ability to eat so that I can rely less on the machine, and some day, soon I hope, I will be able to wean myself from the machine altogether. At this training we decided to disconnect the machine in the morning, have breakfast (provided), lunch (also provided), and dinner (on our own), and reconnect after dinner, running the machine overnight as we have done. We didn't know how that would work out, but the result was just fine. That, along with the long walk to Matthew's office, may be the most significant advances I've made recently.
Carol is at a conference in Denver until Saturday night as I write this, and Melissa has come to look after me in her absence. We still think it's best that I not be alone for several days, and she has been a real help but mostly a delightful companion these last few days. I don't want to burden her with the possibility of some problem arising from my monkeying with the machine, so we will resume our experiment when Carol gets home (tomorrow).
So what do I have here? Gold? Silver? Bronze? Maybe I didn't outrun Usain Bolt, but I'll take my achievement over his any day. He may get to the finish line faster, but I made it there, as Frank Sinatra said so often, my way. I haven't vaulted over the bar like Dwight Stones, but I think I felt just as high as he must have when he won his medals in Munich and Montreal. And as for doing the clean and jerk or hanging in an iron cross or taking part in any of the events that display great strength, well, I'd rather feel like I felt after that walk.
Here's what they won in Athens. The winners must have been thrilled. But when I consider what I have won, I think I did better.
Happy summer to all of you.
Steve
