Going to Fenway Park

Even though I was only a young boy, by the time I attended my first game at Fenway Park I was already a devoted and well-informed Red Sox fan. When I initially laid eyes on the lush green grass, the rich, brown infield dirt, and the imposing Green Monster wall in left field, it was so much more impressive than I had imagined it would be. If only I could say as much about the performance of the team each year.

To this day, that awestruck child in me comes out every time I visit Fenway Park, and for that I am grateful. Although this is baseball’s oldest venue, opened in 1912, they’ve added many improvements over the years, and I find it to be a generally wheelchair accessible ballpark.

A couple of weeks ago I took advantage of the special phone number that I can call for wheelchair accessible seating, and scored us a couple of tickets for game 2 of the American League Division Series against the Tampa Bay Rays on October 5. The accessible ticket phone number allows me to obtain seats to games that are otherwise sold out already.

Because Fenway Park is in the center of Boston, and was built so long ago, there is no stadium-owned parking to speak of. Instead there’s a mishmash of on-street parking, parking garages, and private parking lots. The typical price per vehicle is about $40. We noticed that at this playoff game several vendors raised their prices to $60. However, handicapped parking spaces are free. We have a mental map of approximately 20 such spaces scattered around the Fenway neighborhood. We follow a route each time that begins at our most desirable and ends at our least desirable handicapped space. It’s been a long time since we have been completely shut out, and we weren’t on this day. We claimed one of our favorite spaces on Commonwealth Avenue. Although it is a 10 minute walk to the ballpark, this location affords us a clean escape from the traffic when the game is over.

Kim and I had arrived early in Boston so that we could have lunch with our friend Randi. We chose a well-regarded restaurant near Fenway called Eastern Standard. After a delicious meal and an enjoyable visit, Kim and I walked over to the park.

Once we passed through the turnstiles into Fenway Park, we spent some just outside on a street called Yawkey Way. The Red Sox close Yawkey Way to traffic before each game, and it is transformed into a unique carnival atmosphere for ticket holders. There are vendors, musicians, and even a guy on stilts. It’s great people watching for me, and it’s great iBot watching for everybody else. Of course, I take my iBot when I go to Fenway, and folks can’t stop staring at me in balance mode, and I eat it up. I don’t hear every comment they make to one another as I pass by, but Kim often picks up little nuggets and fills me in.

I keep a spreadsheet (I wish I had a nickel for every time I started a sentence with those words) that lists all of the handicapped seats in Fenway Park of which I am aware. For each seat I have recorded information about the advantages and disadvantages of that location. I take into account the seats’ proximity to accessible bathrooms and food concessions, and whether the seats are under cover or exposed to the weather. I consider the quality of the view. Of course I also take into account the different prices of each seating option. So, whenever I call the ticket office I have my spreadsheet up on my computer screen ready for immediate consultation.

This was game 2 of a best of 5 series with Tampa Bay. Boston had won the previous night by the lopsided score of 12 to 2. The game we attended was another rousing victory for the Red Sox, winning by a score of 7 to 4. Highlights included two home runs by our favorite, and oldest slugger, David Ortiz. The intensity at postseason games is palpable. Every strike, every out, and especially every home run is met with thunderous approval. Goosebumps appear on arms; shivers travel up spines.

In the middle of the eighth inning at every Red Sox game in Fenway Park all 37,000 or so people come together to sing Neil Diamond’s hit Sweet Caroline. On days when the Red Sox are losing it provides some consolation. On beautiful summer evenings, it confirms our love of the game. In postseason games that the Red Sox are winning, it can make you at least temporarily believe that all is right with the world, and maybe, just for that moment, it is. Kim captured some of Saturday’s rendition on her iPhone. (If you’re viewing this through an email you may need to click on this link.)

As a dedicated Red Sox fan, I must admit that the satisfaction I gain from watching the Red Sox is at least partially dependent on the outcome of the game. I always have a good time at Fenway, but I have a better time when they win. This is not all that different from attending a play at your local theater. The act of dressing up and going out with wonderful people almost guarantees a certain level of enjoyment, but if the writing and acting is superior, and the play ends in a way that is satisfying – all the better.

There are so many things that I can’t do anymore, but going to Red Sox games is something I can do, arguably, even better than I used to. I say this because of my ability to obtain tickets to almost any game and my knack for securing free parking. So this is an activity we intend to partake of for years to come, money permitting, at least during seasons when they’re not horrible. They are rarely horrible.

Below are some pictures from trips to Fenway in previous years. Click on any of these pictures, or the pictures above, to see an enlarged version.

Another Walk to Bug Light Park

At the risk of boring you with one more post about how much I love my neighborhood, I’d like to share with you a walk I took on Saturday to Bug Light Park.

It took considerable initiative, more than it should have, to tear myself away from my little routines and venture outside for an hour or two. I’m glad I did.

My house is about a quarter-mile from the entrance to a wonderful biking/walking trail called the Greenbelt, otherwise known as the Eastern Trail. By hopping on this paved and well-maintained pathway I can gain access to several noteworthy destinations. But, by far my favorite walk along the Greenbelt is the one that takes me to Bug Light Park.

The initial part of this route hugs the shoreline of the saltwater cove I live on. The image below shows the view of the cove from my front yard. It’s literally just across the street. Note: click on any image to zoom in.

The black arrow in the above photo indicates a spot on the cove directly across from my house. That’s where the next picture, below, was taken from.

The black arrow in the picture above indicates the location of my house as seen from across the cove. Let’s zoom in a little bit. In the photo below, the arrow again indicates my house. The picture window that you see is in my living room, where I spent almost all of my time in the company of my two best friends – the computer and the television. But I do manage to avert my eyes away from the screens maybe 100 times or so a day, just to gaze out over my little corner of this huge ocean.

I encountered some graffiti. You can see what a rough neighborhood I live in.

Less than half an hour later I arrived at my destination, Bug Light Park.

One of the first things you notice in the park is Fort Gorgeous, sitting strategically in the middle of Casco Bay.

Then there is the namesake lighthouse, which is very small compared to most lighthouses, but no less awesome.

On this day there were two rather large cruise ships docked in Portland Harbor. It gives me a warm, fuzzy feeling to live where so many cruise ships want to visit. And yet, the city is so much more than its tourism.

This was a beautiful day in September, my favorite weather month. Temperatures were in the high 60s. The sun was shining and there were a few puffy clouds. Only the lightest of breezes refreshed the park, enveloping us in the good ocean smell, not the bad one.

The Greenbelt, Bug Light Park, and all of Portland Harbor were busy that afternoon, but not in a hectic way. I think everyone appreciated that days like this, at this time of year, at this latitude, are fleeting.

As I was getting ready to leave, one of the harbor’s tugboats decided to put on a little show for everyone. The boat rotated about so that the waterspouts twirled in the air like a giant lawn sprinkler.

I had brief conversations with all sorts of people that day. For example, there was the elderly man who comes to the park often with his daughter and granddaughter. As we gazed at the cruise ships I asked him if he had ever been on one. “No, I don’t think that’s for me.” Having been on one of those cruise ships before, and having known this gentleman for upwards of 30 seconds, I was quite sure he was wrong about his assessment, but I didn’t correct him.

You can’t help but feel alive, engaged, and appreciative on days like this. These photos and my words fall short of portraying the grandeur of this scene. Perhaps my post will evoke memories for some of you about your special places. But even memories are not enough. There is no substitute for being physically present in these wide open spaces once in a while.

There is some evolutionary itch (or spiritual if you prefer) that can be scratched only in this way. It is nothing short of therapeutic, especially for people who are in pain (and who isn’t, to some extent). There are so many aspects of our lives that are beyond our control, but taking in the beauty of our surroundings is a deeply personal, healing experience that most of us can enjoy once in a while.

And you know what? All of my little routines (and my little dog) were still there waiting for me when I got home, none the worse for my absence. I need to do this more often.

When I Say WE, I Mean YOU

Because I can barely do anything physical, Kim and I have this running gag.

“Kim, we need to mow the lawn, and by WE, I mean YOU.”

“Kim, we need to build a brick patio, and by WE…”

“I know, Mitch. I know. When you say WE, you mean ME!”

As satisfying as it may seem to lounge about and do nothing other than make suggestions and dispense praise or criticism, I’m saddened that I can’t contribute more. Before my diagnosis there were some chores I hated and others I liked. I particularly enjoyed anything that made the outside of our house look better. I was the guy who took care of the swimming pool. I did most of the mowing and at least half of the raking. I loved to cut, split, and pile firewood. I enjoyed pruning trees and bushes. At two of our homes I installed fences. I can’t say that I loved to mow the lawn, but I can’t say that I hated it either.

Today, it eats away at me to see these opportunities and not be able to do anything about them. I have to be careful to not overwhelm Kim with my “Honey, we need to…” suggestions too. In fact, this is one of the few areas of friction in our marriage. I need to do a better job of either cutting these requests to a bare minimum or delivering them in a more thoughtful, considerate manner. Alternatively, if I whisper my requests in her ear while she sleeps she might awaken with the inexplicable urge to do exactly what I suggested. I think I like that idea better.

It’s not as if Kim used to be timid, and all of a sudden had to grow a pair. She’s always had enough audacity to dive headlong into complex projects that she may or may not have any business attempting. Fortunately for us, they usually turn out well.

Also, it’s not as if she loved to lounge around and take it easy before my diagnosis, and now she is forced to get up off the couch. In fact, another running gag of ours pokes fun at her inability to kick back and relax. She seldom reads for pleasure and won’t watch movies with me. This is probably a diagnosable and treatable disorder. No doubt there is a pill that she could take to cure this brand of crazy. But I hope she never finds it, because I like her and my household just the way they are, thank you!

Another motivating factor for Kim is her extreme frugality, which she comes by naturally. I sit back at a safe distance when Kim and her parents devour the coupons and flyers in the Sunday paper. Because of this genetic trait, Kim can’t stand to hire professionals to do any work around the house that we might be able to do ourselves, and by we I mean her. Recently, however, she has exhibited some cracks in this facade, and has not completely discounted the possibility of us hiring some help for a couple hours a week, but I’ll believe that when I see it.

I’m not the only one who comes up with ideas for projects. Yes, I was the one who pushed for the patio that she built this summer (to the right and below), which is nearly identical to the one she built at our previous home (above). Our friends, Khoren and Kelly, who purchased that home from us two years ago, are still enjoying Kim’s first patio. But Kim is the one who decided on her own to paint every room in our new house, to change all the hardware on the kitchen cabinets and every doorknob and hinge in the house, to put hardwood flooring in Zach’s bedroom, and to refinish and paint all of the kitchen cabinets. She will undertake those last two projects this winter. Kim is fairly accomplished at installing hardwood floors (picture at top of post), but this will be her first kitchen cabinet refinishing. Does anyone have advice for how we (Kim) should approach that project?

To summarize, Kim now does all the things that she used to do, all the things I used to do, and all of the additional tasks associated with taking care of her disabled husband. Kim is able to accomplish this because she is a restless penny-pincher, and a loving, caring, and incredibly awesome person.

Thoughts on MS and Aging

I liken MS to premature aging. Not everybody has MS, so it’s sometimes difficult for people to identify with my situation. But everyone gets older.

At certain milestone birthday parties, like a 40^th or 50^th, well-intentioned friends and loved ones often poke fun at the guest of honor by presenting him or her with symbols of old age such as adult diapers or a cane. It’s all in good fun, but it highlights the fact that items such as these, and many more, are associated with growing old, and growing old is associated with becoming feeble. And if MS is like growing old, well you get the picture.

Then there are ailments which are all considered part of growing old: cognitive decline, fatigue, stiff joints and muscles, sensitivity to both hot and cold weather, and balance and strength problems. Another classic marker of old age is the propensity to watch the Price Is Right. These are all blessings that MS has bestowed upon me, albeit prematurely (remember to have your pets spayed or neutered).

Many older people are known to complain about their accumulated infirmities, and perhaps they have earned that privilege. But in certain instances those who are complaining should take into account whom they are complaining to. For example, my father found it more and more difficult to walk pain-free during the last few years of his life. Out of sheer habit he repeatedly grumbled to me about this unfairness, and how growing old was a burden. He did this as I listened to him from my wheelchair, in my mid-40s. On one level I was offended by his insensitivity, but in the end I just cut him some slack – he was inconsiderate but not malicious.

When I go out and about in our neighborhood during normal working hours I am often embraced by the retirement crowd as one of them, even though I’m clearly much younger. Just yesterday I was at the grocery store, in the embarrassing medicines aisle, when a very kind 73-year-old gentlemen approached me and struck up a conversation.

“What did you do for work?” he asked. I looked at him with some level of bewilderment. Sensing my confusion he said, “I assume you don’t work anymore?”

“Yes, I am retired,” I replied. “I used to be an engineer.” Apparently this is how retiree small talk works.

We each went on to brag about our children, and in his case, grandchildren. We also complained about the weather, the rising price of everything (even though inflation has never been lower), and several other injustices. He was a very pleasant fellow, and I enjoyed our conversation. Me and the old folks – we get one another.

As my abilities continue to fade in certain areas, I sometimes can’t determine if it is due to normal aging or if it is due to the progression of my MS. If I start to forget people’s names more often than I used to, is that MS progression or normal aging? If I need to take two naps a day instead of one, MS or normal aging? Become constipated? MS or normal aging? In the end, the root cause doesn’t really matter because the treatment, if any, is the same. But nevertheless, I occasionally lose sleep wondering exactly which incurable affliction is putting the screws to me, the one that everybody has or the one that only a few of us have.

I think we can all agree that certain aspects of growing old suck. But having the body of a 95-year-old when I’m only 49 sucks the big one.

Until scientists solve the aging problem, and Ray Kurzweil predicts this will happen as early as the year 2045, old age stereotyping and good-natured ribbing will continue to exist. Do I feel uncomfortable when this style of humor is used at milestone birthday parties? My honest answer is yes. However, I’d rather be invited to the party and feel uncomfortable for a few minutes, than not be invited at all.

Bonus Time

Nature (Photo credit: @Doug88888)

This post was originally published in 2011, but on the heels of last week's post, I think it is particularly apropos. Enjoy.

My friend Keith ruptured his aorta a few years ago. The bleeding was slow enough and the medical attention he received was timely enough that he survived, despite the odds. If not for outstanding doctors, strength of will (his and his wife’s), and good fortune, we would've said goodbye to Keith years ago.

My mother-in-law was diagnosed with breast cancer a number of years ago. It was a large tumor and she was given a 50-50 chance of survival. It could've gone either way. But due to her indomitable spirit, the support of her loving husband, and modern medical technology, Carole is still with us.

Congresswoman Gabrielle Giffords was shot in her head (in her freaking head!), point blank, by a deranged assassin. Yet she not only survived, but is growing stronger each day.

Keith, Carole, and Gabby are all living on bonus time.

It is heartwarming to learn about people who have cheated death. The heroes of these stories have each acquired a renewed appreciation for life, having come so close to losing it. In some sense don't we envy these folks? Don't we almost wish for our own near-death experience, so that we could stop taking life for granted, so that we would have legitimate grounds to cherish each and every day?

I'm here to say that we can all breathe this rare air without battling cardiac failure, overcoming cancer, or surviving a shot to the head. If you think about it, each of us is already operating on bonus time. Here’s what I mean.

First, every single one of our direct ancestors had to successfully survive their own birth, avoid childhood diseases and maladies, live to childbearing age, mate and produce an offspring before dying of disease, starvation, war, or attack by sabertooth tiger. And except for the last 50 or 100 years, all of our ancestors did this without the benefit of sterile operating rooms, Facebook, or Prozac. Consider the odds that each of our family lines has overcome, generation after generation, to win this tournament of life. Although we may not have cheated death as palpably as Keith, Carole, or Gabby, we have cheated nonexistence by a considerable margin.

, U.S. Congresswoman. (Photo credit: Wikipedia)

Second, think about all of the people that could have been born instead of you, but never were. What if your parents had not met one another, but had fallen in love with (or at least had sex with) somebody else instead? The person that is you, with your unique genome, would never have been born. What if your mother, or her mother, or her mother, had come down with a headache (real or imagined) and hadn't been in the mood to procreate at the very second that she did. Because so much of who we are is the result of the random merging of genes from each parent at the split second of conception, if this moment had been delayed at all then some other child with different hair, a different personality, and maybe even a different gender would've been born instead of you. In the sense that you exist and all these other potential people don’t, you have been profoundly fortunate. Congratulations.

Third, think about all the close calls that you've survived, the first of which was your own traumatic and risky birth. Then think about how many times you’ve stumbled but caught yourself; how many times you almost crossed the street but at the last minute noticed a speeding car out of the corner of your eye; or on how many occasions you overcame any number of teenage and early adulthood risky decisions involving alcohol, drugs, and other dangerous behaviors. Frankly, thinking back, I'm amazed that I've eluded death for as long as I have.

By simply being alive enough to read this blog post you've overcome greater challenges than heart disease, cancer, or gunshot wounds to the head. You shouldn't be here. No one of us, by any statistical analysis, should be here at all. But we are. There is no need to wait for your own story of extraordinary survival. It’s already been written.

Give yourself permission to embrace that same zest for life that Keith, Carole, and Gabby already have. Stop sweating the small stuff. Stop giving a damn what everybody thinks about you. Most importantly, stop putting off your dreams for another day. Start living them today, because the splendid adventure that is your life is a gift that so many other potential people never got the chance to experience. If nothing else, don't we owe it to them to make the most of our good fortune, to live life to the fullest?

Joy (Photo credit: www.0260mkg)

And the size of the dream is not important- climbing all the great peaks in North America or trying to be a more considerate spouse. It doesn't matter. The same principle applies.

When you wake up each day, take stock of how incredibly fortunate you are to be here at all, remind yourself that you're already operating on bonus time, and then act accordingly.

Coping with Chronic Disease

 (Photo credit: Wikipedia)

I can no longer type, and I can’t hold onto a book. I am unable to raise my arm high enough to wave at a friend. I am incapable of getting into bed by myself. I can’t eat, dress, or bathe without assistance. I’m still able to wipe my ass, but barely.

All of my great outdoor passions have been taken from me: snowmobiling, hiking, hunting, golf, camping, and ATV riding. I can’t drive a car, and I can no longer operate my handcycle. I can’t shuffle, deal, or hold on to playing cards. It takes great effort for me to sign my name, and that’s all I can do with a pen.

The insult “he couldn’t hurt a fly” applies literally to me. I can’t swim, or bike, or jog. I can’t walk, stand up, or even crawl. I can’t get up when I fall.

These are just a few examples. I could give you so many more.

And my condition is probably going to get worse over time. Nobody knows why I have MS. Nobody knows how to cure MS. There aren’t even any FDA approved treatments for my type of multiple sclerosis.

And yet…

I still love my life. Having MS sucks, but it hasn’t made me bitter or particularly sad. Here are a few reasons why I still wake up almost every day with a positive outlook:

I’m not wet, cold, thirsty, or hungry. I’m not afraid, intimidated, or abused. I enjoy broad liberties and freedom of expression.

I can still see, and hear, and speak. I can swallow food and breathe on my own. My bowels and bladder still (pretty much) work. I’m not suffering from constant pain. I can operate a computer using a mouse and Dragon. I’m able to sit up in a wheelchair. I can scratch most itches.

I have a diversity of interests which occupy me all day long. I own two amazing wheelchairs, a wheelchair van, and an accessible house. I have a strong support system, led by my incredible wife. I am loved and appreciated and well taken care of.

I smile and laugh every day (is this a cause or effect of my contentment?).

These are just a few examples. I could give you so many more.

So I ask you, what right do I have to complain?

Originally, I planned to end this post right there. Dramatic, huh? The implicit message would have been that everyone should be thankful for what they still have and not lament what they’ve lost. There’s no room for self pity. If I can do it, then so can you.

But I need to be cautious, because the last thing I want to do is be insensitive to people who are unable to cope as well as I do.

For example, I recently received an email from a reader who wondered why she couldn’t be as content as I am even though her MS disability is less severe than mine. She feels sad about having MS, and she also feels guilty about not handling it in a more positive manner- a double whammy. She holds me in unduly high regard for the apparent bravery I display in coping with my disability.

As I’ve stated many times before, I believe my ability to see the positive in an otherwise difficult situation is due more to my genetic makeup than any courage or intestinal fortitude. I should be envied more than I am admired. Individuals who struggle with adversity and are unable to notice the silver linings are not inferior or weaker people. It’s just that this particular skill doesn’t come to them naturally; they have to work at it.

For those people, I recommend going through an exercise similar to what I did at the beginning of this post. Acknowledge what you’ve lost, but also be thankful for all that you still have. I know of several readers whose list of items to be thankful for is not as robust as mine. But I know of no one whose list should be empty. I understand that this exercise probably won’t be enough for most people. There are also resources available on the internet which provide strategies for coping. I am unable to personally recommend any of them, as I have not researched the subject myself.

Additionally, you might benefit from revisiting two of my earlier blog posts. The first one is entitled My 10 Keys to Resilience. I suggest that you read the post in its entirety, but here is the list of those 10 items:

1. Don’t ride emotional roller coasters
2. Don’t become too attached to any particular activity or pastime
3. Accept that life does not owe you anything
4. Stay connected with people
5. Remain inquisitive
6. Get out in the world; don’t withdraw from it
7. Enjoy each day as if it could be your last (please forgive the cliché)
8. Have hope, but don’t rely on it
9. Find the humor in life
10. Give yourself a break

Half a glass of water (Photo credit: Jeff Youngstrom)

The second blog post that you might revisit is “Remember, There Is Always Someone Worse off Than You:” Is This A Valid Coping Mechanism? I explore this question in some detail and conclude that the answer is yes.

It’s not only people with chronic, disabling diseases who struggle to find contentment in this sometimes cruel world. Anyone at any time might experience depression or despair. Sometimes this necessitates clinical intervention, but other times it just requires a fresh perspective. I hope that this post has been helpful in that regard.

In closing, here is a quote from Helen Keller, who was uniquely qualified to address this issue:

“Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.”

Wheelchair Kamikaze – an Unexpected Visit

Marc and I became acquainted when we were hot on the trail of an emerging stem cell treatment in Israel. The total cost was something like $25,000, and, feeling a little desperate, each of us considered how we might fund such a venture. But fortunately, before we threw a bunch of money at an unproven idea, our treatment interests were diverted elsewhere.

If you’re not familiar with Marc, he authors the blog called Wheelchair Kamikaze. His website combines outstanding writing, photography, video production, and research analysis to create what I’m pretty sure is the most widely read MS blog in the world. He was gracious enough to give me some much-needed advice when I started my own blog.

As Marc and I became friends we spent a lot of time emailing and Skyping about treatment options, our mutually beloved Red Sox, or anything else that popped into our heads. We agree on most subjects, but not all. For example, we both embrace the concept of a multiverse- the idea that there is not a single universe but that there are many. Marc likes the theory that slightly different versions of Mitch, or anyone for that matter, live in each of the different universes. I tend to believe that there is only one Mitch, and no alternative Mitch’s are running around (or wheeling around) in the other universes. With such disparate views on the essential nature of our being, it’s a wonder that we can remain civil toward one another.

Kim and I have visited with Marc and his wife Karen several times when we’ve been in the New York City area. There’s nothing quite like a tour of Central Park from a native New Yorker. But Marc isn’t much for traveling outside of the range of his power wheelchair. So I was surprised and pleased when I received an email from him a couple of weeks ago letting me know that he would be passing through Portland on a road trip and would like to stop in for a visit. You can read his entire travel report here.

We chose a nice seafood restaurant for dinner, right on the water. It’s about a 20 minute walk from our house along a paved trail with scenic views of the ocean and the Portland skyline. A homeless friend of ours, Carrie, was staying at our house for a couple of nights, so the reservation was for five.

Throughout the walk to dinner Marc and I tended to end up side-by-side in our wheelchairs, so that we could chat. We compared notes on MS treatments, discussed the best way to grip a joystick on a wheelchair to minimize hand fatigue, and acknowledged how fortunate we have been in the marriage department. By taking up so much space, we often blocked the path for the walkers, joggers and bike riders who we shared it with. Sometimes we got out of the way, and other times we were too deep in conversation to notice. The only remarks we heard from other people were their unnecessary apologies. Wheelchair users can get away with anything.

It was nighttime when we exited the restaurant after a wonderful dinner. Much of the pathway home was unlit, but Kim had brought a flashlight. We soon learned that a single light for five people was about four lights too few. In fact, at one point a bike rider startled our homeless friend, Carrie, almost hitting her. She issued a spontaneous scream, and when no collision ensued and nobody was hurt, we all laughed about it.

Here’s an iPhone shot of one of the views along the walk.

After we returned home from dinner Karen and Marc were able to hang out for a while at our house and pose for these pictures before continuing on their way. This was a memorable visit from two wonderful people. I’ve made so many friends over the Internet in the past few years, but it’s particularly gratifying when I’m able to spend time with them in person.

I suppose I should clarify one item. Our “homeless” friend, Carrie, and her husband Mark have been two of our closest friends for over 25 years. Carrie was only homeless for two days because she had closed on the sale of their house in Maine, and she was waiting for her flight to join Mark at their new place in the San Francisco area. We miss them already, but wish them all the luck in the world on their new adventure.

(Darren, I expect to hear from you re: multiverse.)

A Long-Overdue Thank You

(Photo credit: Denis Collette...!!!)

I’ve thanked a lot of people in my blog posts: Kim, various friends and relatives, random people who helped me at the grocery store, etc. But I’ve been remiss in expressing my gratitude to the very group of people with whom I share my innermost thoughts each week.

To the readers of this blog… THANK YOU!!!!!!!!

I don’t write so that I can admire my own words. I only write because I see that people are reading, and because they keep coming back. I have my moments of insecurity and doubt, and these occur at what I would consider a fairly normal frequency. I can run the gamut from questioning my writing skills all the way to wondering if this whole thing is really a well-intentioned and meticulously executed conspiracy among my friends and loved ones just to make me feel better (think The Truman Show). But whenever doubt creeps in, all I have to do is reflect upon the sincerity of the comments and correspondence I receive. I can also step back and appreciate the number of visitors that I have each day, from all over the world. I am soon reassured that this blog is legitimate, and that I’m not making a fool of myself.

Having said this, if there are any conspirators out there who want to come clean, now would be a good time!

I particularly enjoy reading and responding to the comments at the bottom of each blog post, and receiving emails (there is a “click here to email me” button on the top right of my blog page). In fact, I encourage more of you to leave your honest feedback in whichever way you are most comfortable. But if you simply enjoy reading but not responding, I understand. I am often that way with the blogs that I follow.

So once again, here is a big THANK YOU to the group of people who motivates me to dictate my musings onto the interwebs every week. Authoring this blog is a big part of why I lead such a contented life as a disabled person.


Reminder: Many folks tell me that they enjoy my blog but have trouble remembering to check it for new posts. I think half of them are lying (and that's okay). For the other half, you might consider the convenience of having each post delivered to your inbox. Simply type your email address into the box on the right hand side of the blog’s home page, just above the “Subscribe” button, and then click the Subscribe button. Almost immediately you will receive a computer-generated email that you need to respond to in order to confirm your subscription. Then just sit back and have the material delivered to you each week. You can always unsubscribe or automatically forward my emails to your junk folder at any time.

10 Tips for How to Socialize with a Wheelchair User

Despite my disability, and to a certain extent because of it, Kim and I remain social animals. We love spending time with friends, in our home or occasionally out on the town. I’m sure I’m not the only wheelchair user who feels this way. However, due to our accessibility challenges and other health problems, socializing with wheelchair users (WUs) is tricky business. So that you do not become frustrated and avoid us altogether, I offer the following tips to help things go more smoothly when hanging out with WUs.

1. If the proposed venue is not obviously wheelchair accessible, let the WU be the judge. We will conduct an investigation and ask the questions necessary to be satisfied one way or the other.

2. Don’t forget that it is not only entrances and general gathering areas that must be accessible. WUs also need an accessible bathroom.

3. When you invite WUs out, we must take into account a variety of issues before deciding on a response. If we decline the invitation, don’t take it personally, and don’t be afraid to ask again next time. Also, if we accept and then decline at the last minute, again, don’t take offense. We may simply be having a bad day.

4. Disclaimer – this step requires an unusual degree of tact and finesse. When socializing, check in with the WU or his companion/caregiver on occasion to make sure that all is well. But don’t overdo this, or it becomes difficult for us to feel at ease with the group.

5. Remember, in a large group it is easier for you to rotate by once in a while and visit with the WU than it is for the WU to circulate and visit with you. I tend to stake out a corner of the room and remain stationary for long periods of time. Make a mental note to seek us out for conversation.

6. Don’t assume that because a WU can’t drink or eat like you that we are not enjoying ourselves. Oftentimes our disability simply doesn’t allow such indulgences. Encouraging us to consume more, although well intentioned, is not helpful.

(Photo credit: Wikipedia)

7. Many WUs do not have the ability to raise themselves up to eye level with standing people (I am fortunate to have this feature on both of my wheelchairs). If you want to enjoy quality conversations with WUs, then please pull up a chair. Similarly, when you are in a standing conversation with a group of people, try not to physically exclude the WUs, blocking our line of sight to the rest of the group. You may think your backside is attractive, but in almost every case we would much rather look you in the eye. Open up the circle so the WUs can participate.

8. If the WU needs to leave early, it’s probably not because we didn’t enjoy your company, and there is probably nothing in particular wrong. Paralysis often comes with other health problems that prevent extended socializing. I am grateful for any amount of socializing that I’m able to do.

9. If our accessibility restrictions are simply not going to work with the activities and venues that you have planned, then please don’t invite us in the first place. That’s okay. We’ll catch you next time.

10. Reminisce. Tell jokes. Laugh out loud. We need that. Some of the allure of socializing for WUs is the ability to temporarily forget our troubles. And really, to a large extent isn’t that why everyone socializes?

Let me share with you two quick stories, the first one about a negative social experience and the second about a positive one.

A group of our friends invited Kim and I to go out with them in the downtown district – dinner followed by drinks at nearby establishments (note that my drinks these days are often of the Diet Coke variety). The dinner would be at a restaurant everyone knew to be accessible for me.

The meal was wonderful, but then things became progressively awkward. The organizer of this group is used to socializing in a fluid manner. When downtown, they may have dinner with a few people, and then mutually part ways and have drinks with other people. Maybe they’ll even meet up with the original group later. But on this night there were two couples in the group who we don’t see enough of, and Kim and I really wanted to stay with them for the evening. But the organizer kept pulling the group in a direction that was largely inaccessible for me. I felt that I had made my desires clear, but perhaps I hadn’t.

Eventually a subtle tension developed in the group regarding which type of establishment we would visit next, and this made me extremely uncomfortable. I felt the sudden urge to extract myself from the situation, so I announced to Kim, a little earlier than I otherwise would have, that I was tired and it was time for us to go home.

The above is an unfortunate example of poor communication at best and insensitivity at worst (but knowing the individuals involved I am certain there was no malice). If it seems like socializing with a wheelchair user is always “all about them”, I’m afraid that is largely the case. Believe me, I wish it wasn’t (there’s too much pressure).

Now, let’s consider at a different kind of story. Recently Kim and I were asked to spend a couple of days at a lake house in northern Maine, as I hinted in my previous post. I don’t travel lightly, but we packed up our minivan with all my disability equipment, and we headed north.

One evening, our hosts invited a dozen or so people over for an impromptu party. There were four stair steps between the main floor of the house and ground level, where there was a nice fire pit just a few feet from the water’s edge. After we all huddled in the house for a while to avoid a thunderstorm, the group reached consensus that it was time to build a campfire. I was completely sympathetic to that idea. This was the obvious, fun group activity available to us. Everyone was under the impression that my iBot wheelchair would afford me the ability to join them. Unfortunately, I no longer had enough battery charge to go down the steps, sit by the fire, and then climb back up the steps. I needed to stay in the house. That was unfortunate, because I love campfires. But even more importantly, the last thing I wanted to do was to ruin this group’s enjoyment by having them forego the campfire on my behalf. What to do?

I stayed quiet until a roaring fire had been built. Only then did I let a few folks know about my battery problem, and things just sort of took care of themselves. As if following some master schedule (but of course no such thing existed), everyone rotated through and visited with me in the house, a few at a time. It worked out wonderfully. This situation might have gone wrong in so many ways, not the least of which could have been my risking the stairs on low battery, and finding myself stranded halfway between the ground and the main floor! That would not have been good.

Wheelchair users are definitely high maintenance social companions. Nevertheless, I find that the vast majority of my group outings are highly successful and fulfilling, both for me and I believe for others. If you like, you can cut out my 10 tips above, laminate them, and carry them in your wallet. Or you can just remember this: spending time with wheelchair users requires that all parties exhibit a measure of candor, flexibility, and empathy. In the end, that’s really all you need to remember.

I’m Taking a Week off from Blogging

You can find us sitting by a lake in Northern Maine, like the old days…