There's a phenomenon that I've experienced in which I receive unwanted attention. I can explain with two examples.

I'm at a new friend's house among a small group. I'm talking to the hosts in an introductory manner. We get to talking about family and siblings. Do you have any siblings? No. And we move forward. I am an only child.

Of course I am not an only child, nor do I have a sibling. I didn't want to bring them down; it wasn't the right time, or place. Should I have told the truth? Would that have been so terrible? I just wanted to blend in. It was so much easier not to.

I'm at a funeral with a lot of people from my past. Everyone is coming over to say hello and I begin to feel like a secondary attraction. I pay my respects to the widower and he very sincerely asks how I am doing. 

I don't want to be drawing attention at a funeral. And may I say this was long before the wheelchair. I can only imagine the eyeballs as I roll out of a van at the next wedding, funeral, whatever.

I guess a bit like anyone else, I have my up days and my down days. But I can't escape the down days. And the up days really aren't so up. There's nothing quite like taking an afternoon nap on a beautiful day.

I'm never quite sure what everyone thinks. Do people think that I have come to terms with my reality, that I am okay with the life that is (to them, and indeed in fact) inevitable. 

I've always felt that to others, once they have heard and understood the news, they accept it and they move on. But for me it never goes away. I'm never able to forget or ignore. It's never going to feel okay. 

When you see me you experience it for a while. And you go back to your life. What you see is my life.

It may never truly hit home, but there are more important things than money.

One of my greatest struggles is that it is very difficult for me to find any sense of accomplishment.

Whatever your relationship with exercise, it is better than mine.

We used to have such a great time together. You helped me meet people and make friends. You gave us something to do together. 

You helped me through some shit. I used you when I felt lonely or bored or trapped or stressed or sad or angry. You were always there, like a brother when I lost mine. 

You gave me a sense of accomplishment, pride, and confidence. You drove me to compete, to give it everything and more. 

I spent so much of my time with you. Shit, I really miss you. How will I ever expect to get along without you?

My first instinct in almost any situation is to make a joke. Example: I just saw a picture of a baby and thought, "Hag".

I never expected to grow up. I never had a plan. I never knew what I wanted.

Now that I'm older, and I've had an endless amount of time to think about it, I know some things. I definitely don't know all of the answers, but I think I know more about what and how to live my life. 

At the very least, I think, at 35 I know that there is a need to think things through and at least try to decide what you want. And to know whether to try to make a change.

So yes, I have regrets. I regret that I didn't grow up sooner, that I let too much time pass without seeing it. I regret that I was afraid, and oblivious, and immature.

I know I'm not the only one that feels this way, but I think I could do so much better now. If given the chance to do it all over, I can promise you, there would be less regrets and more mistakes. 

Crawl on your Back

I posted a story on my blog this past summer, July 22nd. I mentioned in the intro that it was one of several. Here's another.

So I get back to my house after spending the afternoon watching some football at a friend's. Let me back up. I spent the afternoon at a friend's parents' house sampling a cornucopia of beers while watching my fantasy team routinely dominate its opponent. As tends to happen in such circumstances, I had too much beer, not enough food, and not enough water.

When it was time to go, I got into my car, keys in hand, put on my seat belt and prepared to drive home. I couldn't get the car started. The car was fine, but I couldn't turn the key. It was sunny and warm and the car was hot; my palms were sweating badly. I fumbled for the window switches, pushed all four down, and stood up in the seat to get the sunroof button with my head. I used to do that, I couldn't reach the ceiling with my arms.

My friend came out of the house and began to load up his car for the drive back to Boston. I was still sitting in my car, parked in front of the house on the street. I'm sure he noticed me, all of the others had long since left. As if answering my prayers, he didn't look my way.

I wiped the sweat from my hands yet again, placed my right hand on the key and turned. It started so easily. I had even thought I might need to ask my friend to start it for me. What would he think? Would he tell me I shouldn't be driving? Maybe he'd be right? A huge relief came over me. 

So I drove home. It went fine. It was almost an hour drive, some on the highway, on which I rarely drove.

It was dark when I got home. I pulled into the driveway a bit tired from the day and the drive. I turned off the ignition, popped open the door, and swung my legs over to get out. I stood up and paused a few seconds to stretch my legs and get acclimated after the drive. It was very windy at my house that night. As I began to move towards the house, a few feet away, I carefully turned to shut the car door. 

I had just shut the door when a gust hit me from the front, my knees locked up, and I began to fall backwards. There's no stopping once I start to fall. Quick aside: I was at a neighbor's house in the living room when a friend in the kitchen pushed the cork out of a bottle of champagne. It flew twenty feet and hit me in the forehead. The shock was enough to lock up my legs and send me to the floor.

Suddenly I found myself lying in the driveway, neatly between the car and a flower bed. I turned myself over in the dirt and prepared to get up the only way I knew how. I tried to get both arms firmly planted with back arched and elbows locked. Holding in this position, I began to pull my knees forward, inching along one at a time. I didn't make it. My elbow gave out and I fell back to the ground, face in the dirt. I tried again. Same thing happened.

I rolled over, looked into the sky, and tried to collect myself. A thousand thoughts ran through my mind. At least the weather is nice. 

I don't seem to recall the thought that prompted my actions. But I began to push myself towards the back door. On my back. I tell you what, get on the floor and push yourself across the room on your back. Don't lift your head off the floor. Now go outside and do the same across the lawn. 

That's what I did. Inch by inch to the back deck. Fortunately the back deck is only about the height of a large curb. Having said that, it was very difficult and painful to first get my head and then begin inching my torso onto the wooden surface. I do not recommend dragging your neck and back over the sharp edge of a wooden deck. But I made it. 

I pushed a bit further to the door. I positioned myself in front of the screen and sliding glass door. I'm not sure if I knew that the door was unlocked when I started this whole process. I don't recall any moment of silent prayer from my back; I must've known. 

Laying on the deck, feet to the house, I pushed the sliding screen door out of the way. Again, to get the full effect you're going to have to recreate this yourself. Somehow I got my foot up to and in the door handle. Or maybe I didn't. Couldn't I have pushed open the door with my shoe on the glass? Either way, I managed to slide the door open with my feet. And I'm almost in. I begin to push myself over the threshold. It's that sharp metal housing you see at the base of a sliding door. It’s digging into every inch of my spine as I snake my torso into the house. 

And then I'm in. I take a moment to breathe on the dining room floor. I can't believe I made it. But it's not over. Exhausted and ready for a heavy sigh of relief, I still have to get to my feet. I begin to push my way to the carpeted living room. I couldn't get up on the hardwood; I knew this.

Under normal circumstances, all the way up until I moved out, I was able to get to my feet on the carpet. So I tried, the same way I had in the driveway. Not even close. Much worse than it was in the driveway. This had happened before, when I was drinking, or it was late, or for some reason I just didn't have the strength. 

So I rolled onto my back once again and pushed myself over to the leather chair. I was going to do this the same way I had done the rest. I lay on the floor with my head at the base of the chair, (ottoman really) and tried to lift up my head and push with my legs. I got into a sitting position against the ottoman and continued to push, flopping my body further up the chair and into an almost-seated position. I kicked away the ottoman, and planted my feet on the floor before leaning forward with hands on knees, ready to stand up. 

I thrust myself into the standing position and stood still, trying to find my balance and calm my nerves. I stepped slowly towards the back door, pulled it shut, sat down at the counter and gulped down some water. Time to find some dinner.

My keys were in the driveway. I didn't get them until morning.

Whenever I tell anyone about almost any aspect of my life, they say, "I can't even imagine." 

I couldn't imagine either. Then, as time passed, more things came into focus. Each day is imperceptibly different. You think back and say, Wow, I can't believe I could lift my arms, or do a push up, or button a shirt and tie a tie. 

And then you're in the present. And you still aren't sure what's happening. You look in the bathroom mirror and you cringe. You think, Maybe I shouldn't look in the mirror. 

And then the stakes change. You think, Well, I still feel okay. I can still hold my head up. I can chew and swallow and breathe on my own. 

But then you think back to the mirror and wonder, How much more weight can I lose?

And then you try to forget the whole thing.

It's a good day when I can get a few thoughts on the page.

Soon after my diagnosis, I started to take long walks with a friend. Because I was able to. We'd start at his place in Winooski, split a French press of coffee, and head out. It seems like it was always a nice day. 

We'd head down the hill to the circle, cross the bridge into Burlington, and start the hike up Colchester Avenue. We didn't always take that route; there wasn't really a destination, it was just something to do. At least a few times we made it downtown, to Church Street or the farmers' market for a bite, a beer, or a coffee.

We even hiked Camel's Hump. I fell a couple times, tore up my palm on a rock. A friend laughed at me; she thought I was just being clumsy, she didn't know. 

It's been a long time since I've done those things, and the simple joy of walking has escaped me. I resisted a wheelchair (and a power chair) for as long as I could because I saw them as a defeat. I'm just starting to embrace them now, and like a lot of things, I wonder why I waited so long. 

I look forward to driving (driving?!) my power chair as many places as I can. I can see myself cruising around the waterfront. I wonder if it would make it up Mount Philo. I never get stuff to look forward to.

ALS doesn't have a (known) cause, doesn't have a cure, doesn't have any effective treatment. For the purpose of understanding what is happening, I usually just tell myself, my body gave up on me, or more accurately, my spine is fucked. 

Great day to play hooky, drive up to the mountain.

So let's summarize

I quit my well-paying, ample opportunity for advancement job in 2012

I did not complete the third and final level of the CFA program around the same time 

I did not get that graduate degree that my peers got 

I did not buy a bigger, nicer house when I sold mine 

I did not travel the world on adventures with my wife/girlfriend 

When I finally sold my 13-year-old car for two grand, I did not get to buy the kind of car I always wanted. Instead I'm looking at dropping 30k on a used minivan conversion 

In the fall of 2003 I started my first semester at UVM. In the past months I had decided not to return to Villanova, lost my older brother, met a girl, started dating, and moved into her apartment. I had spent the summer almost exclusively in her company, getting drunk and stoned with my high school friends, home for the summer. A group of us seemed to spend almost every night at her apartment, first on King Street and then on Colchester Ave. We were all 19 and back living with our parents after a year of freedom. She was 21 with her own place, about to start her senior year.

I'm not sure what I expected as classes started. Overnight all of my friends went back to college, and I was faced with 18 credits of engineering classes amongst a sea of strangers. 

I think I tried to treat my schoolwork the way I had at Villanova: go through the motions and lean on what you already know. I had gone to class, but it always seemed like a drag. I had spent all of my time socializing.

I started off strong in a few of my classes: Calc 3, and a structural engineering class that was essentially advanced geometry/trigonometry. But others felt like a foreign language from the start, (electromagnetism and what?!) and before long I was drowning.

I felt lost. I felt lonely. I felt like a loser. I was never particularly good at meeting people. I didn't know how to go about it. The transition from a summer without responsibility back to the real world was too much for my immature little relationship. I had one person to talk to, to unload on, to hold me as I cried myself to sleep. It was too much. She cut me loose.

Now I had another thing to mope around about. I had just about stopped going to classes and was back living at home. This was around Thanksgiving. I don't even know what I did the rest of the semester. I was living with my parents and working at their restaurant, but I certainly wasn't going to class and they certainly didn't know it. 

As a couple of months passed my overwhelming sadness became more difficult to ignore. What I really needed was to take a step back, talk to someone about all of this and figure out how to approach this new chapter. 

I didn't attend any of my exams. I was way past that. I think I knew that eventually the shit would hit the fan, but I didn't care. What was going to happen? Now I know the answer to that question is simple: you get kicked out of school. At the time I'm not sure that I knew. I know that I didn't care.

I don't remember the day I got my final grades. Did my parents find out that I had wasted a semester of tuition? Yeah, I guess they did. I remember bits and pieces. When I got my grades, included was a letter detailing the School of Engineering and Mathematics' academic policy. I think students had to maintain a 2.0 to remain in good academic standing, i.e. not get booted out. I hadn't passed anything. In my mind, I was out. 

I told my parents I didn't want to go to college. I bitched and moaned and kicked my feet and eventually resigned to writing a letter of appeal. I was requested to show up in person to state my case, but instead I wrote a letter.

They (whoever they is) read my letter and had me come in to meet them. I don't remember where I sat down with them, or who they were, or even how many. I think there were three, and I know they were to decide my future at UVM. The meeting consisted of my reading the letter, which they produced for me, in person. 

I am thankful that I wrote the letter. It was over 1,000 words, (I can't believe I still have it) and was both more thorough and more genuine than I would have been otherwise. I cried as I read my letter. I wasn't playing it up for the show; I most definitely was not capable of fake crying. After I finished we had a short discussion, part of which was informing me that the School of Engineering and Mathematics allowed students to withdraw from classes at any point throughout the semester, without affecting their transcript. Had I spoken with my advisor, or really anyone, I would've known this, they informed me. My letter also informed of my intention to change my major, and not knowing what else to choose, I decided on the School of Business Administration. 

We set up a plan for the next semester that included sessions with a psychiatrist (psychologist, therapist, who knows?) on campus, and a spot in the dorms to help me feel like less of an outsider. They also set me up with a freshman business schedule that turned out to be the ticket to a 4.0. 

I never did thank them. I've thought about that more recently. They could've kicked me to the curb. I don't know what I would've done. It likely would've taken me a while to get my shit together and start to move in another direction. I am beyond fascinated that three people with whom I spent under an hour, could have such an impact on my life. I'd still like to thank them.

I never did see that psychiatrist.