I can remember my childhood telephone number: 207-794-8247
But I can’t remember the current cell phone number for either of my children.
I do remember where I was when the planes crashed on 9/11 and when I heard about the Space Shuttle Challenger explosion.
However, I don’t remember President Kennedy being shot seven weeks after I was born.
I remember a lot of things from my college graduation ceremony.
But I don’t remember finding out that I was accepted into college.
I can’t shake the image of Billy Buckner letting a routine ground ball go between his legs in what should have been the final out of the 1986 World Series, or whose house I watched it at in Cleveland, Ohio, or the premature, tear jerking victory speech I made just before it happened.
Yet I don’t have an image in my mind of my daughter taking her first steps.
I do remember every room in all six houses that we’ve ever owned.
I just can’t remember where we keep the broom in this house.
I remember turning fifty. It was a blast.
I don’t remember turning twenty-one. I assume I got very drunk.
I vividly recall the births of both of my children.
But I can’t remember finding out Kim was pregnant, either time.
I have at least partial memories of when my brother became temporarily blind (I was two and a half years old) and when my father told me about my mother’s accident (five years, eleven months old).
But I can’t remember a joke, not a single joke. And I can’t remember the name of that guy, you know, that guy with the thing…
I remember being diagnosed with multiple sclerosis.
But I cannot remember the last time I walked. I haven’t forgotten what it feels like, though, because I still walk in my dreams.
I receive so much positive feedback for my blog posts. I am referred to as inspirational, or courageous, or any number of similar accolades.
Of course this buoys my mood, and it motivates me to keep writing. We humans are programmed to welcome, even crave compliments. So please allow me to say a big THANK YOU to all my readers for your support! It means a great deal to me.
But I feel a little bit guilty. I inherited my resilience from my mother. It was an advantage of birth similar to when people inherit intelligence, athleticism, or good looks. In addition to my genetic advantages, I am fortunate in so many other ways. Here are just a few:
I’m a white male in America (three advantages in one)
I have an incredibly supportive wife, family, and friends (apparently advantages come in threes)
I have a certain amount of financial security (at least until the next market crash)
I don’t suffer from depression (am I crazy not to?)
I suppose I have been a good steward of these gifts, and that’s something. I’ve made the effort to share my experiences. I could have kept this all to myself, but I didn’t. I hereby accept any and all praise for being forthright.
But there are so many people who wake up every day and battle against incredible odds, and they don’t get the recognition that I get. I don’t believe I’m any more worthy of this praise than people who are having a rougher time than me, people who don’t enjoy the advantages I do, or people who can’t describe their lives in a positive and inspirational way because they are miserable.
I’d like to giftwrap the complement “you are such an inspiration” that I received in an email last week and deliver it to the person with MS who gives her best every day even though her husband just left her because he “can’t take it anymore.” I’d like to regift the “you’re a remarkable person” comment that I received at my blog and send it off to the cancer patient who is trying to make the critical decision about whether or not to continue treatment.
Since these exchanges are not possible, here’s the deal I propose. I’ll continue to welcome your compliments with appreciation and humility, and I’ll maintain my positive message. In return, we must all recognize those disadvantaged people who are not able to live a contented life – those people who are scratching and clawing just to survive. To me, those are the real, silent heroes.
Now, here is the question of the day for all of you armchair psychiatrists. Did I write this post for purely altruistic reasons, or am I subconsciously craving even more positive feedback along the lines of “No, Mitch, you really do deserve to be admired. Don’t sell yourself short.”
In the last year I’ve experienced increased difficulty getting food from my plate to my mouth. In an ironic twist, my skills at getting food on my shirt, on my pants, or on the floor have greatly improved.
We’ve been implementing new eating strategies for a while. I have plates with high sides so that I can push my food up against the edge in order to get it on my utensil. Below are two examples.
I eat one-handed. My left hand is not involved in this process at all, as it doesn’t have any value to add. So, because I push food up against the side of the plate, I need something to keep my meal from sliding across the table. We’ve purchased several sticky items that, when placed between the plate and the table, help keep things stationary. See the two examples below.
We have also modified my utensils. I have no need for a knife. I don’t have the strength or dexterity to cut food. I’m increasingly ignoring my fork, as spearing food has become more difficult over time, even lettuce in a salad. I mostly use a soup spoon for everything because Kim has already cut my food for me. In order to help with my grip on utensils, we’ve added foam to each of the handles. But even then, I had difficulty manipulating the utensils properly, so I asked my friend Michael to bend my spoons and forks in a couple different directions. Now, they work much better. See below.
It’s difficult for me to lift bottles, cups, or glasses to my mouth, so I tend to use straws these days. We found some reusable straws that we can bend into the exact configuration that we want. But I must admit that neither wine nor beer taste as good through a straw. See photo below.
As I stated in the first paragraph, I tend to spill a lot of food on my chest, belly, and lap. So we finally broke down and bought two adult bibs. They have saved a lot of damage to my clothes. I use them at home, but I haven’t got the nerve up to use them at a restaurant yet. See below.
But even with all these accommodations, I know that in the not-too-distant future I will no longer be able to feed myself at all. Already, Kim feeds me once in a while, depending on the food and on my level of hand and arm fatigue.
From a practical standpoint, there are worse things that can happen to me (and probably will). I’m not going to starve. People will always be around to feed me. But from a psychological standpoint, for both Kim and me, this is a tough one. The problem won’t be private dining, but rather group dining. I hate feeling pitied, and I know there will be a heavy dose of that sentiment aimed at me when I’m no longer able to feed myself.
But it doesn’t have to be that way. We have no plans to stop inviting people over or to curtail our dining out. I intend to sit back and enjoy my meals with guests, just like I always have. I’ll make conversation. I’ll smile and laugh. I’ll bore my companions with long stories and off-the-wall opinions. In the end, this is just another adjustment in a long line of adjustments that Kim and I will have to make.
People are moving back to the cities. After decades of migrating away from one another, and building on huge, wooded house lots that isolated us from our neighbors, people are living in close proximity again. It’s a wonderful thing to see. Cities like Portland and South Portland, Maine are experiencing revitalizations.
As part of this rebirth, instead of scorning the old, industrial and warehouse districts, developers are reinventing them as condominiums, restaurants, and office space. And how about the sidewalks and the streets? What are we doing there?
City governments love to preserve cobblestone streets, for sentimental reasons. They remind us of the history of our great cities – the establishment of commerce, government, and prosperity in a region. We also love the old brick sidewalks. It’s feels significant to tread on the very same bricks that our forbearers forged and laid so long ago. Also, cobblestone streets and brick sidewalks fit well with the aesthetics of old brick buildings. They complement one another.
Ah, nostalgia. What could be wrong with it? Well, there’s a lot wrong with it if you are a disabled person.
The old brick sidewalks that are so faithfully preserved are usually uneven and sporadically damaged. The curb cuts and the transitions are typically steep and rough. Old brick sidewalks are difficult for people to navigate using wheelchairs, scooters, walkers, canes, and crutches. They impose a danger to the elderly and others who have difficulty walking.
Cobblestone streets, in and of themselves, are not so much of a problem, as long as they have an accessible sidewalk and flat street crossings. But that is rarely the case.
Our urban planners have a decision to make. Is it more important to preserve the past and have a consistent aesthetic in these revitalized downtown areas, or is it more important to make our cities accessible to everyone. Too often our city leaders are choosing to ignore the needs of their disabled citizens, and serve other interests instead. As a disabled person, and as an advocate for other disabled people, I find this troubling.
Disclaimer time – I manage to deal with the brick sidewalks and cobblestone streets. I am borderline fearless with my wheelchairs. I enjoy the downtown districts in my area despite the inconveniences. But I worry about other disabled people who choose to stay home rather than deal with our 19th century streets and sidewalks.
What do I want? I want our cities to replace old brick sidewalks with modern brick or concrete sidewalks, with ADA curb cuts. I want our cities to either replace cobblestone streets with paved streets, or ensure that there are smooth sidewalks and walkways for street crossings.
How are Portland and South Portland doing? I’m happy to report that in my South Portland neighborhood the city completed a major revitalization a couple of years ago resulting in new street tops that replaced aging pavement; new, wider concrete sidewalks that replaced crumbling brick sidewalks; lovely streetlamps that replaced outdated and mostly nonfunctioning streetlights; and updated utilities underneath the streets. I couldn’t be more pleased with these improvements, especially the sidewalks.
In South Portland there is still one cobblestone pathway that pedestrians must walk down, for approximately 100 yards, to utilize Thomas Knight Park or to walk across the Casco Bay Bridge to Portland. I’ve been working with the city for over a year on options, and it appears that they are ready to move forward with a paved pathway through Thomas Knight Park. It should be installed before winter.
Here is a very short video I posted in May 2013 at an MS website called My Counterpane, which should give you an idea of why cobblestone streets don’t work with wheelchairs (if you are receiving this as an email blog post, you’ll have to go to the blog website to see the video).
But in neighboring Portland, the situation is terrible. Old, brick sidewalks are in disrepair throughout the commercial district. Curb cuts and other transitions are downright dangerous. Cobblestone streets are sprinkled throughout the Old Port, and many times disabled people have no choice but to hobble over them if they wish to get from one part of the district to another.
When cities give such high standing to old brick sidewalks and cobblestone streets, they are choosing the past over the present. They are choosing nostalgia over accessibility. They are choosing form over function. Worst of all, they are choosing things over people.
How are your cities handling old brick sidewalks and cobblestone streets?
To say that I am a fan of the firm handshake doesn’t begin to do it justice. I don’t only enjoy or prefer a firm handshake. To me, it is essential. A wimpy handshake leaves me wholly unsatisfied with the interaction. Why bother to shake my hand if you can’t put a little effort into it? If you don’t care about delivering a firm handshake, then what else don’t you care about? Truth? Justice? The American way?
It doesn’t have to be overpowering – in fact that’s an entirely different problem. But it can’t be mushy or weak. And I don’t forgive a limp handshake from a woman any more than I do from a man.
Recently, my high regard for the firm handshake has become a problem, because I can no longer deliver one. I can’t uncurl my fingers far enough – I can’t make my hand sufficiently flat – to couple with your hand in the proper way. I often give you only a few of my fingers and no hand at all. If I do manage to seat my hand into yours, which I still accomplish once in a while, then you will find my grip to be underwhelming – generally mushy and soft.
I know you don’t blame me. Obviously, when someone is sitting in a wheelchair they are forgiven if they’re unable to perform certain tasks. What bothers me is that I enjoy the brief connection a handshake provides, and I miss that. It demonstrates friendliness and good manners. It clearly marks the opening or closing of an interaction. So many times, especially in my professional career, a degree of animosity and distrust developed over time with relationships that consisted of phone calls and emails only. But once we were together, once we shook hands, the distrust often dissolved and positive relations ensued.
Of course, the other reason that my recent inability to perform a proper handshake bothers me is because it marks continued disease progression. My right hand is my last decent appendage, and it is continuing to weaken.
So, if I cannot complete a handshake, what can I do instead? I am able to perform a fist bump. But they are a bit juvenile and informal, so they don’t suit every social situation. Additionally, I expect that fist bumps are merely a fad and will lose popularity like the high five, for example.
Hugs work too, but they are too intimate for every relationship or every situation. If you do come in for the hug, please approach from my left side. If you approach from the right side you may hit my joystick and send me flying. Yes, that has happened.
And of course, if you don’t mind a mushy, three finger handshake, then I’m still good for that too. The bottom line is that if we’re in a group and there are greetings going around, don’t avoid me because you’re not sure exactly how to proceed. Come on over and we’ll figure out something together.
When I last updated you on my overhead lift system reimbursement from Anthem, I wrote: “My insurance company indicated they will reimburse all but $700 of the $12,000 product cost. I haven’t seen that check yet, and I won’t believe it until I do.”
I was told by Anthem that all I had to do was submit a one-page claim form, and I would get my check. That’s a funny one.
Just for good measure, when I sent in the claim form I also sent the quotes I had received for the product, the invoices I had received for the product, and a letter from Anthem indicating that the product was preapproved, and at the higher in-network reimbursement rate.
Weeks went by and I heard nothing. I checked their website frequently until one day I saw that my claim had been denied. I was annoyed, but not completely surprised. I assumed there was more paperwork that they would need. So I called them and asked why my claim had been denied.
“The product you purchased is not medically necessary.”
“I am holding a letter from you dated June 6 that says the product is medically necessary, and that I will be reimbursed at the in-network rate.”
“Can I put you on hold?”
“Yes you can.”
About 10 minutes went by.
“It appears you are correct. The claim should not have been denied. I will put it back through the system and you should hear from us in 7 to 10 days.”
In about 10 days I saw online that the claim had been approved. The next day I received a rejection letter via snail mail that I knew was obsolete. But the interesting thing was their reason for denial.
“Our in-house physician has examined this claim and determined that it is for an experimental product. Anthem does not reimburse for experimental products.”
This was an entirely different, yet equally invalid reason for denying my claim.
About a week later I received full payment for the overhead lift system, cashed the check, and paid off my credit card. All is well that ends well.
I posted about this fiasco on Facebook, and I received many comments along the lines of, “That’s how they operate. They deny, deny, deny, and only if you are persistent do you beat them. It’s their modus operandi – their standard operating procedure. They hope you give up before they have to pay.”
I don’t think this is true, exactly. I can’t believe that managers and employees have staff meetings and training sessions where they teach the fine art of deception and lying. These are professional organizations and presumably decent human beings. Yet, it sure looks like they throw roadblocks up just hoping that you’ll trip on one of them, or give up altogether.
What we have here is an organization being conveniently incompetent.
I think they choose not to invest in training their claim processing personnel to be as competent and efficient as they could be, and make little effort to provide them with state-of-the-art claims management software. There would be meager return on that investment. Patients are not their customers, in the normal sense. The insurance company’s customers are the organizations who purchase their group policies. Most of these organizations make their purchasing decisions based on cost and coverage, with little regard given to claim processing service. So, if investing in better service doesn’t win them more business or in any way contribute to the bottom line, management in these organizations seems content with poorly trained personnel who tend to make copious errors, predominately in favor of the insurance company.
That’s how I think these things work. What do you think?
My friend Andrew McLaughlin recently posted the following status on Facebook, after visiting our home town of Lincoln, Maine, during its homecoming celebration:
“While having lunch at the Knights of Columbus BBQ after Saturday’s parade, with Kimberly, I noticed a Lincoln icon sitting alone, in his motorized wheelchair, at the end of a table. He was struggling a bit while cutting up his chicken, so I decided to speak with him and offer some assistance. As I approached former Lincoln police officer Harold Woodard and introduced myself, he smiled and said that he remembered me. We talked at length… After a while I did manage to ask if I could help him by cutting up his chicken for him, not really knowing how a proud man like Harold might respond. He looked at me with caring eyes and said sincerely and with a little surprise, ‘I would really appreciate that’. It made my day to spend a few minutes with a local icon with such integrity and character. The world could use a few more Harold Woodards.”
I’m not acquainted with Mr. Woodard, but he seems like a first-class individual. This blog post, however, isn’t about him. It’s about wheelchair users in social situations, and how well Andrew handled it.
I am able to manage multiple conversations in the comfort of my home or across the table at a restaurant. But it’s so much more difficult at larger gatherings. Wheelchair users are simply unable to mingle nonchalantly like walking people do. The unwieldy piece of equipment we are attached to acts as a barrier – physically, socially, and psychologically. Space is often tight amongst the banquet tables, dance floors, and speaker’s podiums, etc. Therefore, it is preferable for us to remain somewhat stationary, and let the people work their way to us. It’s as if we are a receiving line of one. At least this is how we would like it to work. But more often than not the other socializers act as if they didn’t get the memo, which they probably didn’t.
Please consider this blog post as the memo.
What are the social and psychological reasons that people avoid approaching wheelchair users? I could spend a series of posts delving into this phenomena. Some reasons are: a fear of saying the wrong thing, a perception that wheelchair users are bitter and don’t want to socialize, uncertainty about whether to stand or sit when speaking to a wheelchair user, and fear that the wheelchair user will resent offers of help. Because of these and other barriers, many people are subconsciously disinclined to walk up to us, like Andy did with Mr. Woodard, to ask if we need any help and to strike up a conversation.
Mr. Woodard’s visit wasn’t the first time Andrew behaved admirably in this type of situation. Andrew and I were both attending a Fourth of July party this year at our friends Tim and Lynn’s house (Lynn, is it okay to call it Tim and Lynn’s house now?). In the normal comings and goings at a gathering with twenty people or so, some of whom know each other very well and others of whom are mere acquaintances, I found myself sitting alone for a moment. Andy sensed that and plopped himself on the barstool in front of me, asked me if I needed any help, and engaged me in conversation for ten minutes.
My momentary solitude at that party was not a big deal. It hadn’t gone on long enough that I felt lonely or conspicuous. But Andy took note of it, and took action. The next time you’re at a large gathering and there is a wheelchair user present, remember to treat the individual like a receiving line of one. But do more than shake hands and move along. Strike up a conversation. I guarantee you’ll both benefit from it.
“The world could use a few more Harold Woodards.” I don’t doubt that. But I would add this: the world could use a few more Andrew McLaughlin’s too.
I don’t walk in the woods anymore, but I do sit by the ocean.
I don’t sleep well at night, but I do take naps during the day.
I don’t travel much, but people visit me often.
I don’t work, but I remain relevant.
I don’t walk, run, swim, or bike, but I still breathe, swallow, see, and speak.
I don’t drive, but I am driven.
———–
I am dependent but not helpless.
I am disabled, but I’m not hungry, wet, cold, or abused.
I have many friends, but there is much I can’t do with them.
I am left behind, but I enjoy my time alone.
I am fragile but not weak.
I am embarrassed but not ashamed.
———–
I am a born optimist, but I don’t like my chances.
I am a prisoner in this body, but I possess free will.
I am embattled, but I remain content.
I am frightened, but I am loved.
I am frustrated and discouraged, but more often I am amused and intrigued.
I worry about the future, but I live in the present.
“The Sure Hands lift system has the unique characteristic of allowing a disabled person to control the entire process. If I had one of these, I could transfer from bed to Invacare wheelchair to shower chair to iBot wheelchair to toilet, or any combination thereof –all by myself. How cool would that be?”
Well, it’s installed, and I’ve been using it for a few weeks, and it is very cool indeed.
As you can see from the photos, there are two “hands” that grab me around my chest just under my armpits, and there are two hooks that go around my thighs. I have a remote control hanging around my neck with buttons for up, down, travel right, and travel left. I wouldn’t characterize the lift as “comfortable.” It’s more like “acceptable.” I wouldn’t want to be suspended in this way for more than a minute or two, and luckily I don’t have to be.
I’m able to transfer from my wheelchair to my bed or to the toilet. If we put a second wheelchair or a shower chair anywhere under the overhead rail system, I can transfer to that as well.
Kim likes to sleep later than me on weekends. For the past couple of years I’ve been unable to get out of bed without her assistance. I can now. Granted, the activity wakes her up, but she has been able to fall back asleep once I finish my transfer.
Until the system was in place, we were doing some rather unorthodox transfers, which carried a certain amount of risk for Kim as well as me. Those days are behind us, at least at home.
My insurance company indicated they will reimburse all but $700 of the $12,000 product cost. I haven’t seen that check yet, and I won’t believe it until I do.
I enjoy the thought exercise where I imagine how people 100 years in the future will regard our generation. I hope that they will be horrified by what MS patients had to endure, because the disease will have been eradicated for many years by then. I also hope they will be appalled by our mindless partisan bickering, because 100 years in the future government will be characterized by reasoned debate and rational discourse. And finally, I’m sure that our descendents will be amazed that human beings used to drive automobiles on public roads, because all personal vehicles will be self-driving by then.
What are the potential benefits of driverless cars? There are so many. Here are just a few:
1. Once the technology is in place, human fatalities from automobile accidents will become rare – maybe on par with the number of deaths from drowning. Today, automobile accidents are the number one cause of death for young people. Almost all of these fatalities are due to human error, not machine error. Self-driving cars will monitor each other and road conditions much more accurately than humans do, and they will make quicker and better driving decisions. Once in a while mechanical/computer failure or unexpected road conditions may still result in accidents, but they will be uncommon.
2. When all vehicles are communicating with nearby vehicles and with a traffic monitoring/control system, traffic jams will become much less common. Overloaded roadways will still exist, but with traffic control systems routing individual automobiles in the optimum direction, the situation will be greatly improved. Commutes will be shortened, and workers will be productive or will be free to relax during their commutes.
3. Fuel efficiency will increase as automobiles operate closer to optimum speeds, with much less stop and go driving, while avoiding excess idle times due to fewer traffic jams. Also, with increased operating efficiency will come decreased pollution loading.
4. Personal automobile ownership will drop significantly as a fleet of self-driving cars will be available on short notice, at least in urban areas. This will lower everyone’s cost of transportation.
5. And my personal favorite – people can be transported independently in an automobile even if they are not capable of driving. This will help disabled people, minors, injured people, and even intoxicated people (who are responsible for 1/3 of auto accidents).
The technology is evolving quickly. Google has a fleet of self-driving cars, and has recently developed a prototype of the next generation autonomous car that doesn’t have a steering wheel or gas and brake pedals. The biggest challenges, however, may not be technological, but logistical and legal. How will traffic laws need to change to accommodate a slow evolution from human driven to self-driven automobiles? How will we handle liability in accidents, especially if there are injuries? Who do you sue if the accident is due to an onboard computer failure – the owner, the passenger, the auto manufacturer, the software developer? Also, how can we prevent hacking and protect privacy on the roads?
I can sort of imagine what the roads will look when all cars are self-driven. But I have trouble imagining what the roads will look like for the twenty or so years when there is a transition from 100% human-driven to 100% self-driven cars. People who invest in the self-driven cars will be angry with human drivers who make mistakes that cause traffic jams or accidents. Human drivers will be annoyed by self-driven cars that go too slow or come to silly full stops at abandoned intersections at 2 AM. As laws and economics slowly push human-driven cars off the road, there will be backlash from traditionalists.
“We love our cars, so why should we have to give up the joy of driving? This is America after all.”
Some answers are in my list of advantages – especially the one that states:
“Automobile accidents are the number one cause of death for young people. Almost all of these fatalities are due to human error, not machine error.”
Is this not reason enough?
I think there will always be a place for enthusiasts to drive their own cars, but eventually it will be relegated to specially designated sections of road. I envision that human driving will become a purely recreational activity.
I can’t wait for the day when I can travel independently again in my self-driving wheelchair van. Okay, I may not live that long, but today’s young, disabled people almost certainly will.
