Dream for a Dollar

This may be a bit of a ramble… not really organized… just thoughts of the last 20 or so years… I think it’s about time.

It’s not easy… no one ever said it would be. Life, growing up, responsibility… especially when that starts in your early teens.

I thought I had it hard… finishing out middle school, high school…

Worried about grades… girlfriends… what to do from the 3pm-9pm hours… (usually spent walking around Newburyport with my friend spending hours talking… shifting between talking about nothing and fixing the world while we drank Sprite and Coke, meandering around the back streets of town).

While I was selfishly engaging in my own endeavors my brother Travis was trying to figure out how to get out of bed… how to still cook lunch for himself on the weekends and how to navigate a 200 year old house in a 3-wheeled cart or electric wheelchair, for which the house was never designed.

I can remember my 7 year old birthday party (Travis was 6)… some friends and family over in the back yard on Wood Street in Cambridge. One of my favorite picture of the two of us was taken there… we’re both wearing Oshkosh overalls and wearing striped shirts… remnants of the early 80s… We’re both walking… both smiling… hugging each other…

That was one of the last times I can remember Travis and I getting along perfectly. Andrew (our uncle) brought me a T-ball set and brought Travis a push-cart… kind of a shopping cart / scooter thing.

We moved… things changed… we started middle school… and we found out that Travis had MD. At the time… no big deal… things were rather normal for us… Travis started to wear a leg brace on his left leg (the weaker one) and for the most part things were okay.  But eventually I started to notice that he was falling more… brace or no brace… it was harder for him to get up and walk around. Still it didn’t register that much with me.

(to this day I still jump up and dash around the house when I hear a large bang… muscle memory from all of the times Travis fell and couldn’t get up after falling… Sometimes he landed on his butt… sometimes in a split… sometimes hitting an elbow off something. All you could do is put him in the rescue position and wait for the pain subside before picking him up.)

His first few years of high school seemed to go just fine… I was working in the AV department during free periods at school and interning at the cable company at night. He’d use a three wheeled cart at school to get around… walking at home.

One of my proudest moments in high school… I was in the AV department (which was a loft above the school’s auditorium) was watching my brother give his nomination speech for school government. I have no idea what position he was running for… but if there was something that sparked that kids interest, you better believe that he was in it 110%.

He came into the auditorium (I was watching from the control room above the seats, through a little sliding window we used to manage the lights and sound in the auditorium during performances) and he pulled up to the podium. Not behind it, but next to it… he got up and walked (as much as you can call it walking) over to the podium and gave his speech. I couldn’t believe it. I was so moved I started to cry. He was owning his disability… daring the hushed and awed crowd to make comment.

To this day I believe that he did that not so much to show them that he still could, but to show himself that he still could.

After the 2nd time Travis and I fell down the stairs as I tried to carry him up to bed, since he couldn’t walk up the stairs anymore we went through the trials and tribulations of getting the state to build an addition on our house because the cost of raising two boys on a single income and one of them being handicapped left my mother in unfortunate financial positions. We went through working with the hospital for months trying to get approval for an electric wheelchair for Travis… the cart wasn’t holding up anymore and we were getting to the point where it was needed.

It was fun when it came… we both played around with it… I put on my inline skates and Travis pulled me behind the wheelchair with a rope… but soon it wasn’t a toy. It was a fact of life.

My mother and I were on a jihad using any means we could to discourage the use of the cart or the chair unless absolutely necessary. You see, we knew that once he ’sat’ that was the end of it.

I actually have no idea when it happened… Travis had moved to using the chair at school and still walking at home… then one day… I realized… He’s been in the chair all evening… and has been for some time… weeks even. It had happened… my brother had stopped walking. No conversation. No pop and circumstance… one day he was in an electric wheelchair and no one really noticed… at least I didn’t.

I can remember thinking “huh – when did that happen?”.

I can remember when Travis was in his early teens talking to his doctor and asking some very candid questions… how long will this last? How long before X or Y happens? Watching them make Travis walk down one of the back halls of the Doctors office in just his underwear so they can see how he was able to still walk… I wasn’t watching my brother potentially being humiliated by a group of people who were supposed to be there to help him… I was watching some random person.

Repression for me, you see, has always been a very well used tool. You can’t worry about something if you push it to the back, farthest reaches of your mind. Apparently the problem with that is that those issues tend to surface from time to time and build, and get worse (but this isn’t about me).

Between the MD and Hemophilia that runs through my family tree, I’ve seen a lot of death… and at a rather young age. I had lost 6 or so close members of my family by then. My freshman year at college I had a list… the next 10 family members… Cancer… Hemophilia… Age… Muscular Dystrophy… All I could do was attempt to plan, to lessen the shock, ease the pending pain… all that seemed to do, however, was dull my senses, withdrawing into the inevitable (oops, back to repression again).

I thought about dropping out of college and getting a job to help pay the bills… Travis was finishing up high school and thinking about college and I knew that we as a family couldn’t afford it all. I can recall sitting in my room with my head down at my desk staring for hours at the multicolored carpet just thinking – “I can’t do this. I can’t be over an hour away from my family when they’re at home dealing with all of this.”. Talking to my mother about it all, she said emphatically “No. College is your job for the next 4 years, that’s it. It’s work, you’re getting paid by your diploma. We’re going to do what we’re going to do, you focus on your new job and let us deal with us.”.

I had to take that to heart… so I did. I worried about me. Coming home for the first year and a half for vacations I’d see Travis deteriorate and we’d fight. Internally I was mad… he didn’t do anything but he was getting the shit end of the stick and I didn’t like it and wasn’t prepared to deal with it in any mature-big-brother type of way.

By the time he was a sophomore things started to get better between us. I was living full year in Boston, so in a selfish way I didn’t need to see much of the changes that were going on. I’d go over to his college and see him for the afternoon… have lunch and I was back doing my own thing. He seemed to have things under control. He had a double room to himself and a small group of friends that helped him out, cleaning and doing laundry etc. I also felt more of a brotherly connection as we were both out and about in down town Boston. He was doing well and being independent and I could take solace in that.

I can remember his computer broke one Saturday. His computer being one of the main and soon only outlets to the outside world, I dropped what I was doing and went over to his school to fix it for him. I had a fever and was quite sick, but that didn’t matter to me. I remember falling asleep for a few hours on his bed while I ran diagnostics on his computer. We finally fixed it by the end of the evening and I was upset at myself for falling asleep and wasting his time, even though I was the one that was sick.

A few months later he called me from Cambridge… one of his wheels had fallen when he was just about to cross a busy street. The friend he was with wasn’t technical, so he called me. I was out to lunch down by the Aquarium in Boston. While he was explaining what had happening, I had already started to run to a cab. I told him to sit tight and I’d be there as soon as I can. I would have dropped anything (and still will) if he needed something that I was able to help with. I can’t imagine the stress and fear of being stranded, not able to move – knowing that you couldn’t just jump in a cab or the T and make your way home. A 300 lb motorized wheelchair with one working wheel isn’t as portable as you may think…

We passed the early teens mark… and the late teens mark… the early 20’s and the late 20’s. Each time frame the doctors gave us, Travis has surpassed, blown away… said “NO! F-THAT”.

I know I’m not that strong. No if’s or but’s about it.

This kid gets out of bed each and every day. No complaining, No bitching. He’s written over 4 books that are over 400 pages long (I get to about page 3 and I’m finished). He’s passionate both as a person and about his interests. He has heart, characterful and inner strengths that I may possess 10% of on my best day. He has one of the best outlooks on life of anyone that I’ve ever met. I honestly don’t know how he does it day in and day out.

His computer and his Van are his only real outlets to the normal world outside of a 10′ x 20′ bedroom containing a heater, a bed, pull up computer desk and a small TV. He hasn’t seen the 2nd floor of the house in over 15 years (the last time I carried him up to see how our Mother and I re-painted our old bedroom).

While this was more of rant for me, possibly a compassionate grouping of thoughts by a loving brother… soliciting a few dollars from a handful of people do and can make a difference. As you can see from the quilt raffle, something simple generated over $1,000. Many people don’t know how much it takes to raise a handicapped person… from the simple – purchasing all plastic dishes, cups and light weight utensils… to the insane – attempting to come up with 30k to purchase a van and hope we can get the over $60,000 worth of conversions signed off on to make it drivable.

So for those of you who are so inclined, donate a few dollars… and pay it forward knowing that you will be helping one of the brightest, caring, honest person I know live life just a little better; my Friend, My Best Man… My Brother – Travis.

With love,

- Your Brother