Taking the iBot to Crotched Mountain

Kim and I recently took a hike in the woods.

“But Mitch, aren’t you in a wheelchair?”

Yes. Yes I am.

Please visit the Crotched Mountain Foundation to learn more about their accessible hiking trails.

Please visit www.savetheiBot.org for more information about how to help save this life-changing wheelchair.

Click here (and then scroll down) to read my other iBot posts. 

Click here to view my other iBot videos. 

Click here to win a million dollars.

It's My 10th Anniversary!

A mere 10 years ago today, my life changed forever. I was betrothed to a first class bitch.

She's overbearing, thoughtless, and unrelenting. She takes from me anything that she covets, without consideration of my feelings. She accords me no privacy, remaining by my side 24/7, as if I’m not to be trusted. I've tried to leave her multiple times, but she always finds me wherever I go.

Ya, ten years ago today I was diagnosed with Multiple Sclerosis. What a bitch...

For my diagnosis story, click here, here, then here.    

Home Improvements – #1

As I mentioned in my previous posts, here and here, we recently moved into a new home which has great potential for becoming wheelchair accessible. But it has a few opportunities for improvement (language eerily similar to that used by my bosses in every annual performance appraisal I ever received).

My friend Preston twice made the long drive to our house to practice his amateur carpentry skills. I would hold his finished product quality up against any professional’s. More importantly, his generosity and compassion far exceed the usual and customary friendship requirements. Thanks Preston.

First, I needed a ramp and platform system that would allow me to access the entry door from the driveway or from my minivan. Below are some photos of what Preston built for me on the same day that we closed on the house. Kim installed the stone paver landing at the bottom of the ramp. Her level of commitment goes way above and beyond the usual and customary expectations of a spouse/caregiver as well.







The house has a small porch looking out over our modest ocean view. The only problems were the 8 inch step-up from the ground to the porch, and the 7 inch step-up from the porch to the back door. The obvious solution was to build two ramps, but then Kim came up with a better idea. If we built a 7 inch tall pressure-treated lumber deck on top of the concrete floor of the porch, we would only need one ramp from the porch to the ground. So that's what Preston did for us on another weekend.

Here are some photos showing the construction of the raised floor.







Upon further consideration, we decided to make do with the portable ramp from the deck to the ground for now. Kim is going to install a stone patio next spring where the ramp will land. We’ll wait to build a permanent wooden ramp until after the patio is in place.

Kim and I recently christened our new, accessible, porch.





I’ll share some other home improvement projects with you as they are completed.

Tailgating Tales

Although my house is set up for optimum comfort and accessibility, I am occasionally (ok, often) compelled to leave the nest and venture out into the real world. Sunday was one such day.

We've established an annual tradition of attending a New England Patriots football game at Gillette Stadium in Foxboro, Massachusetts. Each of the last three years we've made the trek with our good friends Preston and Nancy. This year we had sunny skies and ridiculously warm temperatures – in the mid-80s in mid-October.

When four people outfit themselves for a day of tailgating and football, it is truly a complex undertaking. But when you incorporate a cripple like me into the equation, the level of coordination rivals that of a shuttle launch. Suffice it to say, there were Excel spreadsheets involved.

The first order of business was food (in my 20’s it would've been alcohol). Friday and Saturday were all about cooking and shopping. The list of edible delights included: chicken, ribs, hamburgers, hotdogs, chili, chocolate chip cookies, very chocolaty brownies, special party mix, etc. Although I've become a calorie counter out of necessity, I declared a diet holiday last weekend.

On Sunday morning we staged everything just outside the van – food, drinks, coolers, chairs, folding table, grill, and more. But we couldn’t pack many items because most of the floor space needed to be left open for my rather elaborate loading procedure. My station in the van is that spot normally occupied by the front passenger seat. We fastened the iBot to the floor with four heavy-duty tiedown straps. Then we fastened me to the iBot using the seatbelt. Only after all of this fastening occurred, did we pack the gear in behind me.

We made it about halfway from South Portland, Maine to Foxboro, Massachusetts, before it was time for a pee break (for everyone). Since we forgot a couple of items – my spreadsheets are still a work in progress – we stopped at a grocery store to kill two birds with one stone. We unpacked much of the van, took off my seatbelt, unhooked the four tiedown straps from my wheelchair, and I rolled down the ramp. Then, before we could go into the store we had to temporarily reload the van and lock it up. We went to the grocery store, did our business, and then repeated the entire process in reverse.

You've just got to be patient, and we were.

When we arrived at Gillette Stadium I did the iBot equivalent of stretching my legs by immediately going into balance mode. While the others unpacked and set up, I surveyed the large handicapped parking lot that we had been directed to. I got the feeling many of the vehicles in this desirable parking area didn't contain any disabled people at all. Yet, since many disabilities, including some manifestations of MS, can be invisible to the naked eye, I couldn't suspect any particular group of having cheated. Oh well, I didn't give the issue much thought, as this day was all about feasting and fun.

Several hours later, on our way from the parking lot to the stadium, I took a detour to the bathroom. As I approached the handicapped stall, I noticed that the door was closed, but I could not be certain if there was anybody in the stall or not. So I reached forward and gently pulled on the door. It opened. Immediately, a gruff voice shouted "Jesus Christ!" He got up off the toilet and angrily closed the door. Then he yelled at me, “Thanks a lot!”

Oh boy. Game on.

Let's review.

First, this healthy person decided that he needed to take a dump in the only handicapped stall in the bathroom. I know that some of my disabled brethren have no sympathy for healthy people who use the handicapped stall under any circumstances. I, however, take a softer stance. I only feel wronged if someone chooses to use my toilet when there are other toilets that he could have used instead. In this case, there were waiting lines to every stall, so I can assume that he didn’t pass over a normal stall for my handicapped one. I would have typically waited in a semi-patient manner, but he screwed up.

Second, he sat down on the toilet without latching the door. If you do that, and someone opens the door, then you just smile sheepishly and say, "Oops. I'm sorry. I'll just be a minute." But not this asshole. He acted as if it was my fault that he had failed to latch his door.

I positioned myself in such a way that he would have to be deaf and blind (no offense to my deaf and/or blind readers) to not realize that the person he had just lashed out at was a wheelchair user.

I responded to his "thanks a lot!” in my most forceful and sarcastic tone with my own "you're welcome!”

There was silence, and I have to guess, some amount of mental backtracking by the asshole.

I sat outside the stall with arms folded, staring straight at the door, silently rehearsing my speech. But this moron did what most of them do when confronted with irrefutable evidence of their deficiency. He barged out of the stall and somehow managed to slither by me without even making eye contact. I hope I ruined his day, but somehow I doubt that I did.


The Patriots beat the hated Jets 30 to 21. Yea! It was simply a wonderful outing- good weather, great company, hometown win, and the electric atmosphere of an NFL rivalry game. But when 70,000 people attempt to funnel out of a stadium all at once, it's not so different from watching a herd of cattle get squeezed through a narrow gate. I find it best to be in balance mode in these instances, otherwise my face is at ass level, which can be largely unpleasant. Also, in standard wheelchair mode I am unable to see above the crowd, which is a slightly helpless and somewhat claustrophobic experience. I must admit though, my mood can become a bit frisky, even aggressive in this setting. If I spot an opening, I go for it.

Sometimes, in the helter-skelter of a mass exodus like this, minor collisions occur. I was going straight. He was cutting from left to right, and moving against the flow. It could be argued, no doubt, that I was accelerating too quickly for the conditions, although I’m not promising that I’ll behave any differently in the future. I hit him pretty hard on the shin with the corner of my wheelchair. He exclaimed immediately and in this order, "ouch," and then "I'm sorry." That's right. I ran into him, and he apologized to me. (I started to apologize myself, but before I could even get it out of my mouth we were lost to one another in the mob.)

To be fair, I encounter a lot more people like the second guy (who instinctively blamed himself) than the first guy (who instinctively lashed out). If this were not the case then I probably wouldn’t enjoy leaving the nest and venturing out into the real world as much as I do.

Neighborhood Excursion #1 – Bug Light Park

I posted here and here about our recent move to a more walkable neighborhood. I plan to make a series of slideshows and/or videos where I share different excursions that I take in my new neighborhood, using my iBot wheelchair. Here is the first such slideshow, my excursion to Bug Light Park (not Bud Light). The one-way trip from my house to the park took 18 minutes. The video, however, is less than 5 minutes long.

Enjoy.

Guest Blogger- Kim

I’ll start by introducing myself, since I have been invited to be a guest blogger at EnjoyingtheRide.com. I am Kim, wife of Mitch, mother of Amy & Zach, a middle school counselor, and caregiver for my husband of 25 years (in no particular order). These various roles definitely conflict with one another from time to time.

For example, when we moved to southern Maine 11 years ago, I started in my position as a counselor at Cape Elizabeth Middle School. My daughter was a student at the same middle school at that time. Imagine for a moment what it may have been like for me as I simultaneously fulfilled the role of the mother and school counselor of an emotional teenage daughter. Can you envision any situations over a three year span where it may have been difficult to be both people? I probably averaged one situation a day, but thankfully the memories fade over time.

Two other roles I have that compete with each other, even more than being my daughter’s middle school counselor, are being both the primary caregiver and spouse for Mitch. We have been a couple for more than 31 years, and the role of spouse has been one of the most enjoyable and fulfilling experiences of my life. Being the caregiver for my husband, on the other hand, has been one of the most challenging. To be the one who has the sole responsibility of taking care of the maintenance of our home inside and out along with working a full-time job is difficult enough. Beyond this, I sometimes feel like I am on call 24 hours a day, whether it be to help dress my husband, prepare his meals, or to come when he calls my name. I worry about him falling or needing me while I am away. And I also feel guilty whenever I get angry, frustrated, or afraid with what I have to endure in my life, in our lives.

With this being said, many people have asked how I stay so positive, and continue to live life to its fullest. My list of “secrets” is short and much of it mirrors Mitch’s view of the world:

• Live in the moment as much as possible, trying not to dwell on the past or worry about the future
• Don’t get drawn into negativity that sometimes finds its way into your day
• Surround yourself with good people - those who are honest, caring, hard-working & true friends
• Find the positive in all situations, even if seems tiny & irrelevant
• Don’t just complain about things; look for solutions whenever possible
• Treat others the way you want to be treated

To help me fulfill my care-giving responsibilities, more importantly than any of my “secrets” listed above, I recognize how much joy I get from my other jobs: a middle school counselor, the mother of Amy & Zach, and most rewarding - the wife of Mitch.

What to do? What to do?

I launched this blog over two years ago to help pass the time while engaged in a productive activity – advocating for the disabled community. So, have I done that? To a large extent, I think I have.

By disclosing my day-to-day challenges, and revealing my innermost fears and concerns, I've shed light on the kind of issues that many healthy folks are oblivious to. Perhaps I’ve helped some people to better connect with their disabled friends, neighbors, and loved ones. By sharing my general outlook on life and some of my coping mechanisms, I hope I've helped disabled folks in some small way as well.

OK, but enough tooting of my own horn. That is not the purpose of today's post.

I'm not a dedicated researcher. I no longer have the energy or the inclination to be the authority on emerging topics in the medical field. I suggest you go elsewhere for that information. I don't write elegant prose. If that's what floats your boat, I can recommend several other blogs authored by more skilled writers, and of course there are always the popular books and journals.

What I think I do a passable job of writing about are the following:

1. My personal story, which is fairly unique, and when conveyed with honesty can even be compelling at times.

2. My personal beliefs and opinions on selected subjects, which, when expressed clearly, might cause you to stop and think a little bit. I know I always enjoy reading a piece that prompts me to find my philosophical bearings.

I walk a fine line in my writing, describing my circumstances frankly so as to lend authenticity to my message. I do this, however, at considerable risk.  The last thing I want is for my portrayal to be misperceived as self pity.  It’s a fine line.

I try to post at least once a week. Today, it is been a week and a day, and I don't have anything written. So this may be as good a time as any to ask for suggestions from you, the readers.

What would you like to read more about here? Where would you like me to go with the blog? What types of posts have you enjoyed, and what types of posts could you do without? Feel free to leave your responses in the comments section or send me an e-mail at email@enjoyingtheride.com.

Thanks for taking a few minutes to help me overcome my blogger’s block. I need ideas!

Moving (part 2 of 2)

The problem wasn't finding a suitable neighborhood. The problem was finding a wheelchair accessible house or condo therein. Since all of our target neighborhoods were of the urban variety, the houses tended to be old, undersized, and, well, vertically oriented.

We listed our house in May, brimming with enthusiasm and a sense of adventure. By mid-July we were thoroughly disillusioned. We had grown weary of keeping the place "show ready." We were annoyed with having to repeatedly vacate our house on sometimes short notice, only to learn that the prospective buyers were not interested for any of a number of legitimate or sometimes utterly baffling reasons. We were sick and tired of searching online for a house that seemingly did not exist (with one exception). We halfheartedly dragged ourselves through houses that we considered long-shots at best. We decided to endure this process only until the end of July, and then we would resign ourselves to staying in our existing house, which was not a bad situation at all; it just could have been better.

In June, not long after we listed, Kim stumbled upon the only house we ever found which met our search criteria. When we did our walk-through, it was an obvious match. We didn't get our hopes up, however, as we needed to find a buyer for our house before we could even make an offer, and we hadn't had much action on that end at all. Our realtor, usually the eternal optimist, served up a dose of reality as well by predicting that the house we loved would not stay on the market for more than a few days. Luckily, she was wrong.

In late July, just as we were losing interest in this whole undertaking, a gentleman with MS and his wife found our house, and fell in love with it. They were looking for a suburban home that was handicapped accessible. Remarkably, nobody had yet scooped up our target home- thank you Great Recession! So, over a period of a few days we simultaneously negotiated sales and purchase contracts on both homes. It all came together, and on August 26 we closed on our old house at noon and on our new house at 1:30. We were officially homeless for 90 minutes.

It was particularly satisfying to sell our house to someone with a disability. We had put considerable effort into modifying the home to make it accessible for me, and it was comforting to know that those modifications would continue to serve the next family who lived there.

Not onlywas it heartwarming to welcome people whose lives would be improved into our former home, but it was also satisfying to, for once, financially benefit from being disabled. I believe that we sold that house only because it was handicapped accessible. If this had been a non-accessible house, it might still be sitting on the market, like most other houses that are for sale today.

Our new house is not truly handicapped accessible, yet. However, it has the basic layout that will allow for adaptations. Most of the doorways are 36 inches wide. There are no elevation changes inside the house. The master bedroom and bathroom are spacious. The living room, dining room, and kitchen are one open area. The hallway is wide. Nevertheless, I was still concerned that we had overlooked something. I feared that once I got into the house and spent a couple of days I would say, "Oh crap!"

But that hasn’t been the case at all. In fact, I estimate that 90% of the features of the house were more or less what I had expected. Of the 10% of the features which were a surprise, probably 8% of them were of the pleasant variety, and only 2% were of the unpleasant variety. With a grab bar here, a lowered countertop there, and a new roll-in shower, this house will be well-suited for a wheelchair user.

Here we sit in house number six. I don't know why we would ever move into another one, but we always say that. I’m not in the habit of contemplating the future anymore, though. I'm finding that life is best digested in bite-sized portions, one day at a time. When I find myself pondering long-term scenarios, it becomes too much to swallow.

How am I feeling today? Today, I just love my new house.

If you’re in the neighborhood, please stop in for a visit. Flowers and vegetables are nice housewarming gifts. Beer and wine are better ones.


The view of Portland on Saturday, from the bridge which is a 5 minute walk from our house.

Moving (part 1 of 2)

It has been said that a home is the biggest purchase you'll ever make. We just made our sixth biggest purchase you’ll ever make. It's a bit absurd that we’ve owned so many houses. In our minds, however, we've always felt that each move was warranted, and this one was no exception.

Living in the suburbs has a certain appeal. The area where we lived was lovely. The lawns were well kept. There were so many trees around- even a strip of trees down the middle of the street. They were brilliant green in the spring and summer, and they exploded with color in the fall.

But all of that can get a little boring. People who live in the suburbs tend to get in their cars and go to stores, restaurants, bars, etc., with regularity. The appeal is that you live in a pretty little slice of pseudo-nature, and you can get to where you need to go quickly and easily. But when you can't drive, then this idyllic notion of suburban living begins to fall apart. Life becomes a glorified house arrest.

Our new place is in the city. There aren't as many trees, and I'm surrounded by businesses. I don't hear geese honking, but instead I hear planes landing, and I’m immersed in a variety of other urban chatter too. I'm no longer living in this mini utopia of a suburban home. I'm right in the middle of things, and I think that's where I need to be at this point in my life. I had become tired of staring at trees.

Within walking distance, or wheeling distance in my case, I have access to:

• a post office
• the city municipal offices
• two major grocery stores
• Police and Fire Stations
• A huge drawbridge
• one really cool corner store/butcher shop
• a gourmet sandwich and wine shop
• one higher-end restaurant
• six or seven medium-end restaurants
• a dozen or so fast food or lower-end (quaint) restaurants
• several bars ranging from snotty to redneck
• two city parks
• a nice walking trail that leads to a lighthouse
• a couple of places to get my hair cut
• a bunch of shops such as hardware stores and drugstores and other specialty stores
• my bank
• my primary care physician – yes, my primary care physician that I’ve been driving to from the suburbs for 11 years.

And downtown Portland, with all of its amenities, is only a 30 minute walk away.

If only there were a dentist and a chocolatier in the neighborhood, I might never have to leave.

I've made a couple of test runs around the community, to gauge the accessibility of the sidewalks and of the various businesses. It's a mixture of good and bad, as you would expect in an older, urban neighborhood. I've seen classier city neighborhoods, such as where my friends live on Tremont Street in Boston. My new neighborhood was in decline for most of the previous 15 years or so, but now seems to be making a comeback. As such, there exists a blend of shiny new buildings and interesting businesses, alongside vacant spaces and dive bars. In this sense, I suppose my neighborhood embodies a cross-section of Americana, especially in these tough times.

But location was only half of the equation. The other requirement was to find a home that would work for me internally – a home that was wheelchair accessible or could easily become such, like the one I was leaving. This was the more difficult task, and I'll discuss it in my next post.

Here’s one quirky story about my new neighborhood. The enormous, white german shepherd who lives next door wails like a siren whenever he hears a siren, and since we're not far from the police and fire stations, this has been a couple of times a day so far. I’ve never heard a more spot-on siren impersonation.

Empty Nest…Different Nest

(Photo credit: Robert S. Donovan)

Today our youngest child left for college. Although the tuition costs will be daunting, I half expect our finances to improve on balance. Our grocery bill and electric bill should be a fraction of their former selves.

With our older child already living in an apartment and going to grad school, we are officially in the empty nest stage. There's a lot written about the pros and cons of this period of life. The consensus seems to be that once you get over the shock, it can be a very enjoyable phase. I expect that to be the case, but of course MS will throw a wrench in the works.

Kim is my primary caregiver. She does 95% of what I need done. But Zach was our 5% backup, and that was an important 5%. For example, in May Kim was able to attend an out of town conference because Zach was here to help me out. I'm afraid that may have been her last overnight business trip. At the same time that we’re experiencing a decrease in caregiver availability, the need for caregiving continues to go up a little each day, as MS continues to work its magic on my central nervous system.

One way that we are compensating for this imbalance is to relocate from the suburbs into the city, much closer to where Kim works. In a pinch she can zip home and extricate me from whatever dilemma I’ve gotten myself into. Also, I plan to come out of my introverted shell, to charm and enchant any number of unsuspecting neighbors for the express purpose of being able to call on them if I can't reach something on a high shelf, for example. Who knows, maybe I'll discover that getting to know people and making new friends might be enjoyable as well as utilitarian. I'll report back later and let you know.

We’ll be leaving our suburban nest for our urban one over the next couple of days. Wish us luck.