Dream for a Dollar

It has now been about one week since we started really getting the word out about Dream for a Dollar, and at the end of that week we have raised $1,268. I believe that to be a very impressive start, and it is thanks to the extreme generosity of a number of people. My heartfelt thanks goes out to everyone who has donated so far–you are truly noble people.

I hope the coming weeks see just as many and more generous people willing to help me out, and I hope people will continue to spread the word to friends and family. I can’t express enough how much this is appreciated.

I’ve had the same motorized wheelchair for about ten years now. Having one chair for this long as actually an oddity since wheelchairs are usually replaced every four years or so. The bodies and needs of people who use motorized wheelchairs often change consistently over time, so new chairs that can meet new needs are obtained.

The reason why I haven’t gotten a new chair in so long is slightly convoluted, but comes down to the fact that my current chair fit in the van I was buying, and due to the timescale, this is the chair that had to be fitted for the van’s lock-down mechanism if I wanted to get my van completed. They weld a metal plate with a bolt to the bottom of the chair that fits into a lock on the floor of the van, and it costs $1,000 just for that, so it’s a permanent type of thing.

Now that I am getting a new van and a new conversion, I can get a new wheelchair, and this new chair will be paired to the new van. Hopefully everything works out. Ordering a new wheelchair is a process almost as complicated and drawn-out as getting a new van conversion, and I am attempting to orchestrate both on an agreeable time scale. I will need the new chair before the new conversion can be completed. I estimate the wheelchair to take four months (underway), and the van to take six months (and it’s not really underway yet). Most likely I’ll have a new chair sitting around for a little while.

In case you’re interested, here’s a run-down of the wheelchair-ordering process.

• First, Physical Therapist (PT) recommends suitable chair; I go online and do some research. This invariably involves finding the model with the highest speed.
• I then go to the hospital to meet with the PT, an equipment vendor (the entity that will be acquiring and servicing chair going forward), and a rep from the wheelchair company itself. This is called the “wheelchair evaluation”. The rep brings a demo chair that I get to test drive. I touch all the buttons, pretend it’s a race car (closed course, professional driver), kick the tires. Then we take a lot of measurements, go through a long list of options, discuss the justification for the features I need, and come to an agreement on everything down to the color.
• The PT must now write up a prescription, basically, for the chair and all the features we have decided on for submission to insurance. This ends up being a lengthy report justifying in great detail why I need a soft cushion and all other obvious details. The PT is very busy, so this phase alone can take a month.
• Wheelchair request is sent to insurance. My employer insurance will agree to pay their measly portion, state insurance gets the rest. Insurance invariably argues my need for a soft cushion–or whatever–and forces PT to provide more justification. Insurance gives themselves a month to review, then approve or deny. They usually pick a third option called “modified” in which they decide what they will and will not pay for.
• Wheelchair approved (in one form or another) by insurance, the order goes into the wheelchair company. They take about another month to build your essentially customized chair.
• When the vendor receives the chair, we all meet again in the hospital to do some acceptance testing, make adjustments and fit it to me as needed. The annoying thing is that the vendor takes the chair home with them, because they will need to deliver it to my house. After all, I can only drive one chair at a time.

That’s a pretty streamlines rundown, barring any unforeseen delays or problems with the chair itself. I am currently waiting for my PT to submit the request to insurance, which she assures me will be done this week.

At least I don’t have to pay for this set of wheels. The price, which I will omit, is ridiculous.

In case you’re interested, I’m getting the Permobil C500 (I don’t know where they get the names for wheelchair companies or models but they’re usually easy to make fun of). You can check it out online: http://www.permobilusa.com/USA/Products/Rehab/C500-Corpus/

Driving a motorized wheelchair around a home can be challenging, somewhat destructive, and occasionally downright dangerous. One wrong push on the joystick can take a cabinet door off a hinge, going a little too fast through the kitchen can lead to dents in the refrigerator. Me, I live dangerously; my speed control is set to its highest. Generally I’m a good driver and to all my critics I say, “Think you’ve got the finesse I consistently manage? You try driving this thing and see how many things you hit.”

I live in an old house, built in the mid-to-late 1800s. Original, wide board wood floors, horsehair plaster walls, and thresholds–little wooden speed bumps–in every doorway. There used to be one of those speed bumps between the living and dining room, and to fit through the door I had to go over it straight-on. The lower hinge from some door that used to hang in that doorway was still attached to the frame and it stuck out a little bit.

Every now and then, my wheels would hit the speed bump just slightly off and one wheel would slide or roll off before the other. Occasionally when the chair slid off to the side, the wheels would scrape against the door frame and make a squealing sound. Slightly annoying but no big deal.

Until the day, when I was all alone, one wheel slid off the threshold backward and lodged ever so perfectly against the hinge that stuck out. With one wheel pressed against the door frame, the other against the hinge, I quickly discovered that I couldn’t move. Floor the joystick as I might, the tires just spun, the chair just bucked, and I was stuck in the doorway.

I was so determined to free myself that at the height of my efforts I was jerking the joy stick back and forth and alternately leaning forward, slamming back against the chair, and thrashing side to side in hopes that my coordinated attack would jolt me free. No such luck. When I began to detect that burning motor smell I decided my approach had failed and gave up on it.

So, regroup, assess my situation. Stuck in a doorway. Can’t free myself. Phone in my lap. Well, guess I’m going to have to call for help. I knew there were no friends or family close by so I had to bite the bullet. I called the fire department.

“Yes, hello, this is not an emergency. You see, I’m disabled and I use a motorized wheelchair and I’ve, uhm, sort of become lodged in a doorway.”

Dead silence. Then, “Sir, did you say lodged in a doorway?”

“Yes, that’s correct. Narrow doorway, wide chair. It’s a long story. Bottom line is that I am stuck and I can’t get out. Can you, uhm, send someone over? The back door is unlocked.”

“Ok, sir, I’ll send someone over.”

“And it’s not an emergency, just a little problem.”

So I hung up and then I heard the sirens. Oh give me a break! So a fire truck pulled up in front of my house, lights flashing. No less than four firemen, fully dressed for fire-fighting, emerged from the vehicle and made their way to the back of the house. By then, neighbors were coming to their windows or stepping out of their doors for a front row seat to…whatever disaster had befallen their neighbor. No one ever asked; I was never going to tell.

The firemen found their way in and come through the house, assessing the situation: a wheelchair wedged in a doorway. Surely this was a first for them. Thankfully they left the jaws of life in the truck. Two of the firemen had to go around behind me by way of the front hallway. With one at the front of the chair and one behind, they managed to lift and shove the wheelchair free. I thanked them, they suggested I remove the threshold, and four firemen filed out of my house and returned to their truck.

When my mother returned from work that day, she got out her crowbar and took vengeance on the door frame. After a few moments of considered deconstruction, the threshold and molding were removed from the doorway, giving me a flat passage between both rooms with about an inch more space on each side.

One of the experiences I’ll never forget; the day firemen rescued me from a doorway. I can imagine what the police report in the local newspaper said for that day. I wonder what people thought when they read, “The fire department responded to a man stuck in a doorway.” Must be one huge man.

Yesterday I had the intake meeting at the Mass. Rehab. Commission. The office is in an old mill building with ceilings so high you feel shrunken as you walk down the halls. The trend at MRC is tiny offices with paperwork filling every available document tray, rack, drawer, and most desk surfaces. The people in those offices help do great things for people in MA who need help getting to work.

The intake meeting is basically filling out forms, signing papers, authorizing releases of information, and devising a plan of action. In my case, the plan is pretty simple: I’m seeking a van conversion with assistive driving technology so that I can retain employment. Can’t get to work if I don’t have a way to get there, and my current van is slowly beginning to fall apart!

Once it’s proven that I qualify and the plan is signed, the call goes out to Mr. B. (I’ll use initials since I have no idea if these people want to be identified), the engineer with a thick Russian accent who oversees the actual van conversion process. I worked with Mr. B. for my first conversion as well. From there it’s A, B, and C, Mr. B. wastes no time marching you through the steps.

So the plan is really on a roll now! This is where it starts to get exciting, if not a little hectic. But hectic in a good way, the way that leads to continued independence with a new, healthy vehicle.

I am working on revisions to a short non-fiction story I wrote in college about some summer camp experiences. I attended a specialized camp for children with muscular dystrophy from the age of 12 to 20. The camp is a wonderful experience, of being able to make friends with other kids who understand what it’s like and are on the same ability level, at a completely accessible camp that helped us do what all the able-bodied kids can do.

The story is sort of a coming-of-age tale, a story of friendship and the search for freedom. When it is ready, I intend to share it here on this site. People who have read it have responded positively and have asked to see it here. So, keep your eyes out for it and take a look when it’s up. I hope you will enjoy it.

I don’t have to go to work today because I have Patriots Day off. This is my company’s first holiday since MLK day in January. Several years ago, we didn’t get MLK day, so we went from New Years to April before having a day off. The entire heart of winter. I’ve always jokingly called that journey through winter “the long hard march to spring.”

Winter is a beautiful season, I will give it that. There is a stark beauty to bare trees against gay skies, to a fresh, pillowy snowfall, or those mornings when everything is coated with ice and snow to create a crystal wonderland. Winter in New England is associated with warmth of heart and spirit, cozy nights with cocoa while the cold wind howls outside, and my mother’s winter cooking. These things I love. My problem lies with just two things: Snow and cold.

Anyone who knows me knows I like it hot. There’s a reason for it. I have very little muscle, what’s left is skin and bone, and I chill easily, like some frail old man. At the same time, I have trouble wearing heavy coats because they’d weigh me down too much and I wouldn’t be able to move my arms to drive. I wear a down vest, which keeps my arms free to move, but doesn’t protect too well below 20 degrees. It takes extra time for someone to help me get it on, then get it off, and I have to spend time adjusting it around my seat belt in the car so the belt doesn’t crush me. It adds another 5-10 minutes to my morning routine. Without the coat, I get to work earlier, and maybe even have time to stop at Dunkin Donuts for some num-nums. So you can see why I like it warm, no bother with a coat.

Then there’s the snow. My current motorized wheelchair is hearty and durable but can still only go through 2 inches of snow at most. Everywhere I go has to be shoveled or plowed, and I can’t clear off my car so someone has to do it for me. A garage would be ideal but you deal with what you got. When it snows, I tend to feel restricted. I love those days when a blizzard gives you an excuse to stay inside with a cup of tea and a good book or movie, but afterward you want to go back out into the world and get stuff done.

When Spring finally arrives, I rejoice. The coat gets put away and the world seems to open up for me. It becomes so much easier for me to go outside. Possibilities abound. I can come out from hibernation and venture into the world again. The long, hard march comes to an end. That’s what this long weekend means to me. I chance to reflect on another winter defeated and rejoice at the onset of spring, knowing that, despite myself, I’ll miss the parts of winter that I love.

When I had the conversion done on my first van in 2003, they told me I would be eligible for a new conversion in six years. I’m not sure how they came up with that number to begin with, but it had to do with the expected prime life-time of the van and adapted system. To be safest, best to get a new system every so often. Somewhere in the middle they extended it to seven years.

I called the Mass. Rehab Commission, the government division responsible for the program, last summer, six years after taking possession of my current van. Predictably, they told me it was now seven years, call back in January 2010. I tried. Didn’t fool them.

When I called in January, the first step was to be placed on a three-month waiting list, which is the abbreviated wait-time for re-intakes who’ve already had a conversion. That wait period ended on April 12. So…

The wait…is…over!

On the 26th, I have an intake appointment at the MRC, where the process will officially get under way. I’m not completely sure the order and time-line of events, but I’ve been told it will involve going for another specialized driving test (doesn’t seven years of driving sort of prove that, yes, I can drive? *shrug*). There is also a bid, in which adaptive systems companies bid for the job (it’s the government, lowest bidder wins). And, at some point, they tell me to go out and buy a van.

Welcome to Dream for a Dollar folks!

I am honored, humbled, and overwhelmed that this site was set up with me as its inspiration. I know it’s hard times right now, and that’s why we’re counting on the power of the dollar. One dollar. A lot of one dollars. But we believe that even the smallest dollar can change the course of the future. So this is our experiment, and I really hope you’ll help us out. If we raise more money than I need, that money will be given to others in need of the freedom of transportation. No matter what, your donation will help improve someone’s life.

I’ll keep you updated with the process, giving you an inside look at the program and how it progresses. I hope you will find that interesting.

Thank you for visiting, thank you for reading, thank you for caring and helping!

Travis