I have the best grandmother in the world. For a few months she’s been running her own fundraiser for my van, selling raffle tickets to a beautiful quilt that she made. Check out the video, when I finally learn of her amazing success:
It’s been a while since I’ve written an update. Mostly that’s because I’ve been waiting. Someone once said something like 85% of life is spent waiting.
In the time since my last post, I have completed a second evaluation using MRC’s new van, which is equipped for single-joystick driving. I had several different meetings in which I drove the van around the area close to my home, getting the feel for it and trying to figure out how it would all work best for me. Driving with a single joystick is definitely a different experience, and awkward having just started out. Like all new things, it’s just a matter of getting used to it and I’ll have plenty of time for that during training. In any event, it was clear from the evaluation that this is something I am completely capable of. Driving this way will be wonderful, and I can’t wait. One hand can fully control the car’s motion, and the other hand will be able to fully control the car’s functions. The touch-screen control panel will be placed face-up by my left hand, where I can control shifting, lights, heating, and other functions while I drive–something I cannot do now with two hands on the controls. The evaluator is writing the report, so I and the MRC should get that soon.
After that, there’s nothing left to do besides get the van, and I’ll have to re-assess my options–if it’s at all possible to get a van before February, when supposedly the 2011 Town & Country comes off the line.
I also received my new Permobil C500 wheelchair since my last post. I am still in the process of customizing it to my needs and comfort. This involves an annoying process of positioning foot plates and armrests and joystick at the perfect height, angle, distance, that are optimal for my functioning in my chair (if the armrests aren’t perfect, I can’t lean to the side in the way I need to in order to lift things to my mouth, for instance). It’s annoying because there’s little science to it–it’s all completely by feel, according to how I have my current wheelchair set, but getting it perfect by “feel” is anything but precise. Besides that, I am waiting for different parts to replace ones that it came with that don’t work best for me, like leg pads (used to keep my legs from falling when I extend the footplates) that stick out too much, making it impossible for me to pull up to a toilet, something I kinda need to be able to do. So this, too, is a process that can be daunting and a bit frightening (I’ve incurred all this time and cost to get this chair, but what if I can’t get it to be comfortable? What if I can’t do all the things I’m used to because this chair is different? What if it makes me need more help? Scary thoughts when I am not, as yet, adapted to the new chair).
Those are the biggest updates.
It’s also the holiday season, so I am looking forward to a vacation from work, family gatherings, food, and giving & receiving presents. The New Year looks promising for me, and brings with it lots of change. While exciting, it can also be stressful, as all change can be. It’s like riding a wave: challenging while it’s roiling beneath you, but once you ride it out and the water is calm again, you can breath easy knowing that everything is all the better than it was before. As one of my mantras goes, everything works out in the end.
I hope all your festivities and celebrations are happy, and filled with love and hope.
A lot has happened since my previous post.
After the paperwork from my driving evaluation was received by the MRC, I began working on shopping for a van. Getting the van is the next step, before different companies bid on the conversion that will be done to it. What I need is fairly specific. I want to get a Chrysler Town & Country, so it was recommended that I get the mid-level Touring class, and I also need to get the towing package, which includes heavy-duty transmission and load-leveling, which is needed for what they are going to do. Turns out, they don’t have a perfect match at any dealership within several hundred miles. I also want to get the color of my choice, because if I’m spending tons of money on a van I absolutely want a color I like! However, when I went to order the van, the only way to get everything I need, I was told that the 2010 model is no longer available for order, and the 2011 model would not be out until February 2011.
So I found myself with an additional six months added to the schedule.
I think I had written previously about MRC’s desire for me to have an evaluation on their own high-tech evaluation van, which is due to be completed on October 1st. As it happens, the friend from summer camp I wrote about in “Sail the Sea” had a van with a single joystick–one joystick to control both steering and gas/brake–and he was telling me the benefits of having just one joystick. At my evaluation down at Easter Seals in Connecticut, they recommended I drive with two joysticks. However, with one joystick I have one hand free to operate secondary controls, like headlights, wipers, heating/AC, shifting, etc. Currently I cannot operate these controls while driving because I am using both my hands to control the vehicle. One joystick is also less work physically, as only one hand has to do work–and my right hand, which is stronger. When I asked Easter Seals about going for a single joystick instead of the two they recommended, I was told an evaluation would include 10-15 hours of driving time–just for an evaluation. Well, that’s not possible.
Since I had six more months to wait, I decided to ask for a second evaluation using MRC’s own eval van, which can be equipped with the single joystick. Easter Seals seemed to think a single joystick was exponentially more difficult to operate than two, but I am convinced I have the intelligence and spatial skills to master a single joystick without difficulty. A second eval, I hope, will speak to that, and if it goes well, I should have the option of going with a single joystick. I don’t know what requirements this evaluation will have, but if it does require something more intensive, at least it’s fairly local, as opposed to going all the way down to Connecticut. Hopefully this will take place within the next several weeks, since the van will be complete this upcoming week.
While another six months of waiting is annoying, it does offer more time to run the fundraiser. The amount raised so far, c. $4200, is a huge help no matter what, but in that time I am hoping to bring out the generosity of more people who have not yet donated. For the past couple months, the donations have come down to a very slow trickle, which means I have to work harder to get the message out. If you’re reading this, and there’s people you know who might like to help, you can help me by continuing to spread the word, and asking friends and family to encourage people they know to help. Your help is hugely appreciated.
I went down to Meriden, Connecticut on Sunday and had my driving evaluation yesterday morning at Easter Seals.
Seeing as driving with the current controls is growing more difficult, the idea of driving 150 miles, 3 hrs, seemed very daunting. I had fears that I would be exhausted by the time I got half way and would have to struggle on in Homerian fashion to reach my destination. I planned it our very carefully, making sure all the highway transitions would be easy enough for me to manage, and they were. I noted down all the rest areas, plotted the mileage and time span between each one, and planned to stop frequently and rest. I even made note on every exit I would pass whether they were easy or difficult just in case I had to get off the highway in between. (Google Earth is a godsend for me, because I can get detailed imagery of any part of my travel. With it’s Street View feature, one can even look at all the important road signs to know exactly what the exits or interchanges will look like.) The reality was encouraging. I stopped three times on the way, and only the second time was an extended lunch rest, but even upon arriving at the hotel we stayed at (Homewood Suites in Glastonbury, outside Hartford) I didn’t feel all that tired.
I was pleased with the accommodations at Homewood Suites. The suites have a little kitchen complete with full-size fridge, microwave and stove (silver utensils in the drawers!), a living area with sofa-bed, a bedro
om with two queen-sized beds, and a spacious bathroom with a roll-in shower stall. Finding accommodations on the road that actually work for me is an adventure in itself. When everything is set up for me so precisely based on my needs and abilities, it’s hard to find a place that can perfectly fit the bill. (The first hotel I called had an “accessible room,” but when I asked about the bathroom they said it was just a normal bathroom without any modifications. Okay, that’s not an “accessible room,” save for in name only, and it doesn’t fool anyone.) Nowhere can perfectly fit the bill, and that’s where resourcefulness and adaptability come in handy. It also helps to have reliable assistance; for this, my friend and care assistant Mark came with me on the trip.
I knew Homewood Suites was the right choice when I realized there is a Bertucci’s right around the corner f
rom the hotel. Anyone who knows me knows that I’m on a first-name basis with most of the staff of Bertucci’s restaurants across the North-Shore area. A nearby Bertucci’s is like God telling me, “This is where you should stay…and have a delicious dinner in reward for your long travels.”
Meriden is another fifteen minutes down the highway from the hotel, so on Monday morning we got up bright and early and headed down for my 8:30 appointment. The evaluation starts with paperwork. Paperwork, one realizes, is like the capital letter and the period at the beginning and end of each and every event in life. Following the paperwork, there are a series of perceptual and cognitive tests. These are fun because you get to look at pictures and give answers like a game. I read smaller and smaller letters, revealed the depths of my depth-perception, proved that I could see in color, that I had learned well my road sign shapes, and that I could do all that at night, too. Cognitive tests include pattern recognition, being able to remember shapes and designs, being able to mentally complete unfinished images, and even connecting alphanumeric dots, alternating between letters and numbers in ascending order. The fact that these were all extremely easy and I did perfectly well on them emphasizes the point that I am still perfectly capable of driving.
Then came the driving test itself. I was pleasantly surprised to learn that they have their own joystick evaluation van. I had been under the impression that they did not, considering what I wrote further down about needing to wait for such a van to be made. This was wonderful because it meant my trip down was thoroughly productive. Driving with joysticks–I have two adjectives each preceded by the same adverb: VERY FUN and VERY EASY!
The set up they had was a Y stick for the gas/brake and an X stick for the steering. On the left-side, I held a joystick that controlled the gas by pulling back, and the brake by pushing forward (back & forth = Y). On the right side, I held a joystick that controlled steering, pull left to go left, right to go right (side-to-side = X). As I pull the steering stick, the wheel spins around in front of me, the further I pull and longer I hold the stick over, the more the wheel spins and the harder the turn. When I release the joystick, the wheel automatically straightens itself. I test drove in a large empty parking lot nearby, going in circles, making eights, speeding up, stopping, and generally making the locals wonder what the heck I’m doing.
When I drive now, a lot of my body is involved. I use my shoulders, upper arms, I lean from side to side. With the joysticks, I can stay completely straight and secure and just move my fingers and hands around. I didn’t even realize just how much I had to move with my current controls until I was driving with joysticks and just relaxing, my fingers doing all the work. One wonders why all cars don’t use joysticks by now.
The evaluator, Tricia, thought the joystick system would be a good fit for me, so the evaluation was a very positive experience. With that done, we can move on to further stages of this process, which will involve a bid on the actual conversion, and buying the actual van. Once the driving test was complete, Tricia and I sat in the car where we, guess what, filled out paperwork. We went through the actual evaluation report, where they make recommendations on all the technology I’ll need in the new van. The entry ramp, the driving system, the secondary controls like windshield wipers, shifting, horn, lights, etc., and etc., etc. There’s a lot to consider.
Paperwork done, I was free to go. Confident from the drive down, I looked forward to the open road and coming home again, filled with a sense of accomplishment and anticipation for a rebirth of independence with a van I will be able to drive easily and safely anywhere I could want to go. Life is a highway, and I want to ride it all night long.
Third time is the charm.
After two months of anxiety, and three separate requests for approval, MassHealth has come around to Approve my new wheelchair. I just got the letter today.
What a relief!
After the first denial, my physical therapist wrote up another long, detailed justification for the wheelchair. Several weeks later I received another letter, once again filled with DENIED. At that point I was really depressed about the situation. When some other institution has such power over things you know you need, not only physically but mentally, it can be pretty frightening. Who are they? How can I convey to them that I’m a fellow human with needs? That their decisions cause me agony? It’s so impersonal, like working with a machine that only runs algorithms and otherwise doesn’t care if you live or die. I am thankful for the people who are out there fighting for my benefit, like my physical therapist and the people at the equipment vendor, and even the representatives for Permobil were very helpful. They have experience getting these things through, and it looks like they came through.
After the second denial, my physical therapist wrote an even longer, more detailed justification, and it appears this is the one that finally got through to the mysterious All Powers that be at MassHealth. If there is some employee there who finally looked at it and said, “Hey, the guys needs this chair, give it to him!” then I am thankful for that, too.
There is one downside: They did deny the seat elevator, which I was informed they tend to do. To them it is an unnecessary frill apparently, but being able to sit a little higher and not always have to look up at people, or see over some counters, or just reach something a little higher than my reach, would be revolutionary for me. Not to mention being able to raise myself up makes it easier for the people who help me. So, I’ll have to see what the options are there, and if it’s worth fighting for it. At this point, I don’t want to risk upsetting the All Powers and getting a “No chair for you!” I just want the chair I need!
This is a gift. It’s something I need, a no-brainer really, but having to go through all this turmoil really makes you appreciate the things you might take for granted. That I need a chair is granted. That I can get the chair I need I cannot take for granted. Another reminder to appreciate everything. And, in the end, more proof of the power of hope. It worked out. Hope is like a balloon that carries you slowly but persistently across a chasm of fear and uncertainty. Just got to keep holding on.
My birthday is on Tuesday, three days away, so a fitting time for a gift.
If all goes to plan, I could have the new chair in a month, maybe two. In the meantime, I can go back to focusing on the new van with a little less anxiety.
I’m a little upset today.
I wrote earlier about the process for obtaining a new wheelchair. Well, MassHealth sent me a decision letter yesterday. They have decided to deny my request for pre-authorization. MassHealth has decided that a new wheelchair is not medically necessary. Or perhaps they just prefer I find a cheaper model that doesn’t meet my needs.
My doctors and my physical therapist and I have determined what best meets my needs, and a bunch of bureaucrats have the audacity to contradict that and tell me what’s not medically necessary? Do they think it too luxurious that I be comfortable, that I have a chair that doesn’t cause me pain? That gives me some independence? Have they tried sitting in one of these things all day every day? I feel like telling them, well, your legs aren’t medically necessary, have someone carry you around instead.
This is American health insurance. Deny a disabled man his wheelchair.
As for the van, the next step is to have a driving evaluation to determine what technology would be best for me. For that, I must go down to Easter Seals of Connecticut (a long, long drive). The earliest appointment is August 9, two months away. As if that wasn’t frustrating enough, the director of the mobility technology program insists that if I want joystick technology I have to wait for MRC’s new evaluation van, which will have joystick tech, expected to be ready some time in October. They didn’t have this van for other people who received joystick tech (and others have I have learned), and that didn’t seem to pose a problem. Normally I’d say it would be great to use joystick tech in the evaluation, but time is of the essence. My van is up for inspection this month. Considering its history of the past several years, I could be looking at another $1,000 of maintenance for it to pass the test (the ball joints and brake pads seem to need yearly replacement). So, needless to say, I am anxious to keep this process moving. The way the government works, this as-of-yet-nonexistent evaluation van won’t actually be ready until November or December.
It’s not like I don’t expect things to get more and more complicated. My life so far is one long demonstration of complication. I feel I have the tools to meet the challenge, but it is stressful, and it is frustrating, and sometimes downright discouraging. Having to depend on the fickle ways of our government doesn’t help.
One of the biggest glowing lights shining down this challenge, though, is the kindness and generosity of all the people who are contributing to this van. I feel it’s not just money I am receiving, but a little piece of everyone’s heart. You care, and that touches me and gives me hope and comfort. And don’t think it takes a lot of money to show you care! If everyone who ever sees this site gives the $1 we’re asking for, that adds up to a lot (you’d understand if you saw the number of hits this site is getting =), so please don’t feel like it’s not worth it to send just that $1.
I am not sure what the next step is for getting my new chair. I’ll have to appeal the decision and gear up for a fight. I’m not sure how long it will take to reach the next step for my van, either, and I’ll have to push my case there, too. But I need them both and want them so I will fight for them.
Knowing I have so many people behind me gives me strength. Thank you!
Yesterday my mother and I went up to Ride-Away in Manchester, NH, a vendor of accessible driving equipment, on their invitation to look at technology. This turned out to be a very fascinating and informative trip.
There were several important things about the upcoming process that we were able to learn.
Part of the process involves a bid between companies that perform van conversions. Lowest bidder wins the contract. This can be a problem if certain vendors offer only certain items, or even if a certain vendor is farther away than another, meaning a longer travel to fit the van and get repairs if needed. However, we learned that if we prefer to go with a different vendor than the one who wins the bid, we can opt to pay the difference and choose who we want. There are not many options for vendors who do these kinds of high-tech conversions, and Ride-Away does the conversion that I believe I’ll need. They are also a lot closer than the current vendor, making maintenance for the van a whole lot more convenient. So it’s nice to know that we will have some choices.
Probably the most important thing I learned is what vans I can actually fit into. I currently have a full-size van, which is always going to be big enough for me to fit inside, but Ride-Away pointed to the single van on their lot and said they just don’t sell anymore. No doubt. They’re big, harder to maneuver and park, don’t fit in as many places, and guzzle gas like crazy. I never wanted one to begin with, but circumstances forced us into it.
The story with minivans is like Goldilocks & the Three Bears. If the van is too low, my head is right against the ceiling and I’m looking out the very top of the windshield. So I have to use the van that is just right. I got into a Dodge minivan, but I was too high. I got into a Toyota minivan and I was way too high. I got into a Chrysler Town & Country and I fit just right! Which is perfect, because that’s the minivan I’ve always wanted.
Ride-Away is a vendor of Braun Ability van conversions. Braun converts vans to be accessible by removing seats, lowering the floor, and in some models raising the frame of the van to give enough interior room for someone in a wheelchair. If I were to go through Ride-Away (which won’t be definite until after determining what equipment I need and who wins the bid), they would get a van from Braun and then add the driving equipment I would need. The Braun Entervan XT that we looked at goes for $54,000. Take a look at this thing! It’s pretty sweet. Thankfully, if we buy the van from a normal Chrysler dealer, the state still pays for all the conversions done by Braun and Ride-Away. Options are still limited. The van I buy needs to be one I can fit in, one that can be converted to my requirements, and one that has the strength and durability to haul my wheelchair and all the accessibility equipment around. That tends to mean a more expensive vehicle. I will need to buy a mid-level minivan with power everything, powerful engine, strong suspension, and all that. However, dealers offer a helpful mobility rebate, and vans purchased for conversion for use by disabled people can be exempted from sales tax. This will be helpful.
According to the rep who showed us around yesterday, Massachusetts will fund whatever equipment I need to drive, including a joy-stick driving system. We looked at one yesterday, the option in which one joystick controls everything: steering, acceleration, and breaking. This, too, is good news to hear, and I am still nervous for MA to confirm that what he says is true. We’ll find out. The beautiful thing about the joystick conversion we looked at is that an able-bodied person can still use the OEM steering wheel and pedals to drive the van. In my current van, the gas/brake pedals can be used, but the wheel is locked in place; one must use my little wheel to drive. Not easy at all. If I get this conversion, someone else can drive on the trips that are too far for me, or if I’m sick or just too tired. That truly opens more options for me, and increases my freedom in exciting ways.
We gained a lot of information, and knowledge is power. When working with a government program, it’s best to know as much as they do or more in order to be prepared. There were things we didn’t know the first time that we should have. Now we know a lot more, about what I need and how the system works, so that we can use this program to our advantage and not get taken advantage of. I want to drive for as long as possible, with a van that works perfectly for me, and this time I think we can get closer to that ideal.
There is a tab up above where you can read the non-fiction story about my childhood summer camp experiences, “Sail the Sea.”
Between the ages of 13 and 20, I eagerly anticipated my week at camp when summer approached. I would see friends again, have that feeling of fitting in and being equal, and enjoy camp experiences. There was also a morbid aspect to each year’s return, though, for we would learn of the campers who had died over the course of the year. In my story I note how many young people with MD do not live long beyond their last year at camp. Some don’t even make it that far.
Even at camp, our escape, there was a constant reminder of the real world and our mortality, of the war we each daily fought with the disease destroying our bodies. When my camp friend Dan told me one of the boys who’d hung out with us the year before had died, at the age of 14, there was this moment of silence and a weighty depth in the look we shared. Could either of us be next?
On Memorial Day we honor those who have fallen in war in the service of our military. There are other wars being waged, much more personal, much less publicized, between this disease and those born with it. It is a different kind of war, with different kinds of courage and endurance, and different kinds of death. Yet the war is just as deadly, the courage just as true. So, too, is the hope that we will survive; that victory–a cure–will come while we still live.
Many won’t make it to that day, though; the enemy they fight will eventually win. So on this day I will also remember the people I knew, the friends that I had, who lost their lives to this disease. And I will live knowing the value of each and every day. We should all do the same.
After two weeks of going live, our grand total now stands at $2,152.43 (figures may be more recent than the scale). $884.59 was donated in just the second week.
I think that’s absolutely amazing for a week-2 total and I am so thankful to the people who have been giving their support.
This past week I started spreading the word around my office and not an hour after I told a small handful of people, the whole company seemed to know. I want to give a special thanks to all my coworkers and the extreme generosity they have been showing to me. I’ve known for years I work around some great people, and they are really proving that. As an example, one man and his wife even donated winnings from a table-tennis tournament–what an amazing gesture!
Along with donations, I’ve also received words of support on a more personal level, and I am touched by what some people have said to me. I am so glad that people are enjoying the stories that are offered on this site and that they are moved by my experiences.
So, again, thank you to everyone for making this such a success so far.
I remember, at some point in my childhood, having imaginative discussions about the future. Video games in the home had begun to be popular; I had a Nintendo. One of the things we predicted was that someday cars would all be driven with joysticks. Well, that might still be off in the future for most cars, but I am hoping it becomes a reality for me in my new van.
My current van has two hand controls. I pull into the driver’s position, there’s no chair there, and lock-in in front of the steering wheel (which is still there, but it’s locked in place and disconnected). To the right, there is a horizontally-mounted 6-inch steering wheel. Attached to it is a tri-pin handle for my hand–I grip the front-most pin and the other two go on either side of my wrist, holding my hand in place (Google Image search “tri pin” and you’ll see). To the left is a gas/brake lever with another tri-pin handle. Push forward and the brakes are activated; pull back and the accelerator is activated (at first it seems counter-intuitive to push forward to stop, but the idea is that if I should lose control or fall forward (which can’t really happen; I am securely strapped in), I will fall on the brake, not the accelerator).
Using a smaller, horizontally mounted wheel is fairly easy, but it still requires that I move my arm in a circular motion to make turns. My arm will continue to weaken like everything else, so a time will come when even this small wheel might be too hard. I’d like to avoid that. The technology exists to use joysticks for steering and gas/brake–either one that does all, or one for steering and one for gas/brake. There’s a company, EMC, that can do this. Check out this site, and you can see the different options.
Thing is, I do not know if the state of MA will approve a joystick driving system. When I got my first van, they said they did not. It’s been seven years, so who knows. Joysticks would make driving another magnitude easier, and I believe would assure me a much longer time on the road. So I am hoping very much that they will cover something like that.
The great thing about EMC (a Maine-based company it says) is that Ride-Away, an adaptive driving technology company in Manchester, NH, is an authorized vendor. Manchester is closer to me than where I currently have to go to have my equipment serviced, so it would be an all-around easier option. I called them up to ask about joystick systems and they have invited me up to take a look at some of the conversions they are currently working on. This will give me a chance to really learn what the possibilities are. Either way, it will be a cool adventure to see some cool technology. I’ll make sure to write about the experience after I go there (not sure when at the moment).
In other news, my MRC councilor came by my house yesterday to have me sign the finalized plan for services that is required to start the process–I wrote about this in a previous post, “Plan of Action.” Eligibility has been determined, the paperwork has been signed, sealed, and delivered this morning. I now await the call from Mr. B., and then the fun really begins.
