The Price of Independence

It’s been a long time since I’ve been able to get into and out of bed by myself.

In my March 18 blog post I wrote that I was trying to get my hands on a device that would dramatically improve the ease and safety of my home transfers, and possibly allow me to transfer independently. Good news – shit’s happening.

My amazing occupational therapist, Maren from Coastal Rehab in Cape Elizabeth, is working with me on this project. After we investigated the various overhead lift systems available in the marketplace, in the same way that six years ago I investigated the various wheelchairs available in the marketplace (and found the iBot), one particular technology stood out above the rest. 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?

Below is a YouTube video showing how the system works. If you’re reading this post through an email, then click here to watch the video.

I learned that my good friend Darcy, who has MS and lives in a condo just down the street from me, already owns a Sure Hands lift system. I gave it a trial run. The first thing I noticed was how tightly the Sure Hands grabbed me around my upper torso, just under my arm pits. It was uncomfortable. But I decided that the vice-like grip of the Sure Hands would be something I could live with in order to take advantage of its significant benefits.

The Sure Hands system is distributed in Maine by All-Ways Accessible, out of Concord, New Hampshire. I contacted them and asked for a quote. A few days later Heather showed up at my door. She reviewed the system operation with me and looked over the job site, which included my bedroom and adjoining bathroom. She also spent time in the attic, assessing how the system would be supported in my ceiling. I asked her if we could adjust the lift mechanism so it didn’t squeeze my torso so tightly. She responded, “No. You don’t want it to drop you.”

Good point.

A few days later I received a quote for $12,000, plus or minus. Heather asked how I would pay for the system, and I indicated that I was looking into insurance coverage. She informed me that very few of her clients were successful in obtaining reimbursement from insurance companies, but she wished me luck.

To me, this should be a no-brainer for the insurance company, even if the decision is based solely on dollars and cents, with no consideration given to morals, ethics, or compassion. Installing one of these overhead lift systems would be a lot less expensive than any of a number of injuries my wife or I might suffer by executing all these transfers manually. But I don’t really understand how insurance companies make their decisions, so I didn’t find this logic particularly comforting.

I called Anthem and reviewed the situation with them. They indicated to me that if medical necessity could be established (piece of cake), this would be a covered expense. I was encouraged, but still skeptical.

Maren and my primary care physician’s office put together a package requesting preapproval from Anthem. After weeks of back and forth – questions asked, answered, and then asked again – I received a letter from Anthem. It read very much like a rejection, but was it? They disallowed my request on the grounds that I could obtain a similar system in-network, from a local vendor in Maine. Well, that simply isn’t true. But even then, I found a single paragraph on page 2 of the letter which said that I could choose to use the out-of-network benefits program to obtain the system from All-Ways Accessible.

I contacted Anthem to ask what the difference in cost would be for me between the out-of-network and the in-network programs. They explained that it is a maximum out-of-pocket expense of $2500 versus $800. Paying only $2500 for a $12,000 system doesn’t sound like a rejection to me. I went over the issue several times with the Anthem representative to make sure I understood it. I think I do.

Here is how I expect things to proceed. All-Ways Accessible will be here on May 15 to install the overhead lift system. I will pay for it using my credit card. I’ll file a claim with Anthem for $12,000, and they will reimburse me $9500. If things actually proceed in the manner I expect, I will be thrilled. Yet, part of me still worries….

My next post on this subject should be a series of photos of my new system, with gushing praise for how much it has improved my life, and all for a manageable amount of money.

We shall see.

Dogs

If you're going to have a dog, and you sit at home all day like me, it's best to have the ideal dog. Phoebe is not the ideal dog. In fact, she's crazy and a pain in the butt. But I love her to death.

Phoebe is a West Highland White Terrier, commonly referred to as a Westie. We went through several breeds of dog before her. Every one of them had serious flaws. This time around we did our research.  We went with a Westie because they are intelligent, non-shedding, friendly, spunky, compact, loyal, and absolutely adorable. What we didn’t take into account was that they are also stubborn, whiny, barky, and occasionally aloof.

Phoebe is our first Terrier and has several characteristics that I’ve never seen in a dog. Perhaps her most interesting quirk, and great entertainment for our guests, is her TV-watching. She stares at the television waiting for any animal to dare show itself in her house. She reacts most intensely to dogs, but also recognizes any four-legged mammal, certain primates, an occasional bird, and most reptiles. She’s even reacted to cartoon animals. Phoebe is so clever that she can be two rooms away when she recognizes the music associated with one of her favorite dog food commercials, and she comes running at full speed. She is so stupid that she thinks this two-dimensional image is a real dog. When she identifies an animal on TV she goes nuts – barking and jumping toward the screen. Luckily, she is too short to do any damage. It was funny the first 100 times. Now it’s mostly annoying.

The other unique trait she has is the ability, and willingness, to tilt her head to extreme angles to try to understand what a human is saying to her. This never gets old. I think she has a listening vocabulary of 20 or so words, and she is trying to position her powerful ears relative to our voices in search of one of these 20 or so words. Her favorites are: treat, ride, dog, walk, or any sentence beginning with “do you want to…” Her most dreaded word is “bath.”

Regarding affection, she is hot and cold. When we return to the house after having been away, she turns herself inside out with sheer joy and love. She more than forgives us for having left her behind. This behavior persists for about five minutes, and then she is off to something else. In contrast, if it’s the middle of the day and I am bored and I ask her come over and jump in my lap, she stares at me like a cat would. She does not cuddle on command.

I love my dog, and I hope she has a long life. But when she’s gone I don’t think we’ll replace her with another Westie. We’ll keep trying to find that perfect breed. Maybe I’ll even look into a service dog.

Have you found the perfect breed, the perfect dog?

My Old Life

Life (Photo credit: Light Knight)

Do I miss my old life, the one before MS?
You bet I do.

When do I miss it?
Every time I think about it.

How often do I think about it?
Not very often.

My life was quite satisfactory before MS reared its ugly head. Yet, I spend so little time lamenting my losses. I’m too busy living in the moment, my new moment, my new life. So much of what I thought defined me as a person no longer exists. Thankfully, my new interests and passions are proving to be satisfactory in their own right.

I’ll contrast this with my father’s situation. As he aged and lost the ability to enjoy his lifelong pursuits, his world kept shrinking until he sat in front of the TV and watched ESPN most of the day. He wasn’t open-minded and willing to explore alternatives, and he suffered for that in his later years.

I’m not claiming that my quality of life is as good as it used to be. But I’ve learned not to dwell on this. I live in harmony with my healthy past. My memories bring me more joy than resentment. From time to time I look at old photos or share stories with friends and family. I even write blog posts which draw heavily from these memories. But when I am done reminiscing, I occupy myself with one of my new pursuits, to stave off self-pity or wallowing. It works most of the time.

My message, therefore, is this. Yes, cultivate and pursue your interests with enthusiasm. Don’t hold back. But be wary of defining yourself by these same passions, because things can change in a heartbeat. Remember, the name of the game is to live a fulfilling life. Just because you may have found one formula for accomplishing this, keep in mind that there are other means to the same end.

What Do I Do All Day? I Facebook

This is the ninth in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

I’m aware that Facebook is childish, an invasion of my privacy, a huge waste of time, and the leading candidate to bring about the end of the world as we know it. Nevertheless, I am an enthusiastic Facebook user. Here are a few reasons why.

I can remain connected with organizations I belong to or that I am simply interested in, like these:

American Humanist Association
MA Class of 1982
Knightville Mill Creek (my neighborhood Association in South Portland)
Primary Progressive Multiple Sclerosis
Positive Living with MS
Save the IBot
Boston Red Sox
New England Patriots

I can read the latest updates from my favorite local businesses, such as:

Verbena
CIA
Snow Squall
Portland Lobster Company

Through EnjoyingtheRide.com, I have decided to make myself this transparent, public figure, albeit a minor one. I have become an open book, seemingly to inform people of what life is like for a disabled person, but perhaps because I simply crave attention. I’ll discuss almost any personal topic, as evidenced by my recent post about emptying my bladder. I have come to use Facebook as a tool to promote my platform, my personal brand –Enjoying the Ride. As with my blog, I consider my Facebook page to be public, and I treat it as such. I don’t put anything on my wall that I don’t want the entire world to have access to.

I approve almost all friend requests, other than obvious spammers. What does a friend-request spammer look like? Nobody knows, but their Facebook image depicts a young, sexy woman. Their “About” page is essentially empty. Usually the spammer and I have a solitary friend in common – one of my male acquaintances who was suckered into believing that a beautiful young woman actually wanted to be his friend.

I have almost 500 friends, but here’s the thing. I only subscribe to updates from maybe 100 of them. Here’s a partial list of behaviors that cause me to stop accepting updates from people:

Too many mediocre jokes or memes
Too much information about boring day-to-day activities
Too many posts about political positions that I disagree with
Too many posts about political positions I agree with (although I have slightly more tolerance for this)
Just too many posts, even if high quality
Too many religious posts – spirituality should be a private issue
Too much incorrect information (according to Snopes.com)
Pushing your personal business interests too hard
Being mean to other people
Talking to dead people on Facebook
I simply don’t know you at all and therefore I’m not interested in your personal updates (no offense)

I hope I don't sound too harsh, but if I don't manage this than I am inundated with too much information to process. Of course some of my closest friends and relatives get a pass on more than one of these exclusion criteria. You know who you are.

I also take advantage of the Facebook chat window. This mimics cell phone style texting. However, because I use Dragon NaturallySpeaking on my laptop, I much prefer to chat on Facebook as opposed to texting on a cell phone or tablet.

Finally, Kim likes to use the “check in” feature of Facebook. When we are at a bar or restaurant or some large event, she can indicate as much in her status update. More than once, friends have seen the check-in and have been nearby and joined us. But one time in particular the check-in feature was awesome for us. We were at a Red Sox game at Fenway Park a few years ago, and Kim checked us in. My cousin’s daughter, Cynthia, who we hadn’t seen in many years, was up from Philadelphia with her new husband, who we had never met, to take in a Sox game. She saw our update, and we were able to visit with them during the game. If not for Facebook, we would have been oblivious to one another’s presence at Fenway.

My friend Marc Stecker posted this link recently, explaining how our online presence, including things like Facebook “likes,” is used by marketers in a very sophisticated and almost creepy manner. Frankly, I don’t mind. After all, I’m an open book.

Although Facebook is riddled with shortcomings, there are enough advantages sprinkled in that somebody with as much free time as I have can benefit from participation. For very busy people, Facebook may be one habit that doesn’t make sense. For me, it’s a vital connection to the world outside my cocoon.

Here are my other posts in this series:

1. I Watch (mostly) Quality Television
2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
6. I Blog
7. I Read Other People's Blogs
8. I Obsess over Our Finances

Hope Springs Eternal

Robin (Photo credit: blmiers2)

I run the kind of blog where readers can trust that they’ll never be subjected to a post about the weather. Nobody gives a shit about other people’s weather (except my mother-in-law). 

So please forgive me, because I am going to mention the weather, but only to inform you of my feelings. Everyone says they want to know more about my feelings (except my ten and a half male readers). 

All of us here in the Northeast have suffered through an epic winter – lots of snow and bitterly cold temperatures. For wheelchair users, winters like this one are long, confining, and borderline depressing. I don’t do well outside in the extreme cold. I can sometimes manage the snowy sidewalks, but only on a warmer day. 

Please note that the obvious solution is not an option for us. I have 100 good reasons that I can’t move from here to a warmer climate, but I won’t bore you with them. 

Almost every time I venture out in the winter it begins with me being loaded into the wheelchair van, and somebody else driving me around. No independence there. I appreciate my drivers, especially Kim, and I know my circumstances are preferable to being home-bound, but it does become tedious after a while. 

Twice in the past couple of weeks, on unusually warm days, I’ve been out in the neighborhood by myself, and it has been liberating. It boosts my spirits when I experience something as ordinary as a warm breeze on my face. It’s nothing short of therapeutic when I can go to the grocery store and purchase an item by myself and bring it home. Everyone loves the coming of spring, but wheelchair users – all the more. 

I look forward to a full season with our new stone patio in the backyard – reading in the sunshine during the day and sitting by the fire in the evenings. I daydream about taking the greenbelt path to Bug Light Park, where I can watch the ships come in and out of port. I so want to grab lunch at Verbena or an ice cream at CIA whenever I like, although I will need to monitor my waistline more closely. I could go on. 

As I sit here on the first day of April, temperatures still struggling to reach the upper 40s, I am like a kid on an extended Christmas Eve. I know the gifts are coming soon, and I just can't wait to unwrap them. 

I Keep Falling

Hoyer lift, used for lifting patients into/out of bed. (Photo credit: Wikipedia)

“Sometimes I wish for falling
Wish for the release
Wish for falling through the air
To give me some relief
Because falling's not the problem
When I'm falling I'm in peace
It's only when I hit the ground
It causes all the grief”

― Florence Welch

The type of wheelchair transfers I do are called “stand – pivot.” The reason that I can stand at all is because of the spasticity in my legs and Kim’s firm grip on the back of my pants, not because of actual standing ability. During this type of transfer there is a critical maneuver where I rotate 180° and land at my destination. It works pretty well, almost all the time.

But last Friday morning my legs lost their spasticity halfway through the pivot, and I started crumpling to the floor in slow motion. My legs were stuck in an awkward and painful position under my full body weight. “Pull me forward. Pull me forward!” I implored Kim. She was able to do that and I had a semi-smooth landing, face down on the carpeted floor.

Kim rolled me over and placed pillows under my head and under my knees. I was comfortable. We did the usual roll call of body parts and found that, once again, I had fallen without significant injury. She then went out into the garage to gather up the various pieces of our portable Hoyer lift. This would be the second time we had used this lift in the last year to raise me off the floor.

Did I mention that my daughter and her longtime boyfriend have moved into our house? There’s probably enough interesting material on this subject for a future blog post. Anyway, Nick heard Kim making noise while gathering up the Hoyer lift components, so he emerged from their luxury accommodations at the back of the house (which I fear are so cushy that they will never leave) so that he could help get me off the floor. The Hoyer lift is barely adequate for transferring a disabled person from a wheelchair to a bed, or vice versa. But this lift is not set up well for picking a large person off the floor. Therefore, Nick had to support my head and back while Kim operated the lift. Before long I was back in my wheelchair, only slightly battered and bruised from the ordeal.

Each of my transfers is now a near fall, except for the ones that are actual falls. I know that you are tired of reading about this sort of thing, and I am tired of writing about it, not to mention living through it. I realize that there are several choices for safer transfers. Instead of the stand – pivot, we can do the squat – pivot. Kim has been trained on this procedure. We can also use a slide board. I ordered one and it arrived last week. But these are merely incremental improvements. I’m inclined to make a dramatic improvement. What if there was a system that provided much safer transfers and actually allowed me to accomplish these transfers independently? How cool would that be? Well, there is such a system, and I’m trying to get my hands on one.

Stay tuned to this channel for further updates….

Here’s one parting quote on the subject of falling, by a man who ought to know.

“The greatest glory in living lies not in never falling, but in rising every time we fall.”  ― Nelson Mandela

An Argument from Love

“If you refuse to do it yourself, I’ll do it for you,” I threatened.

“Oh no you won’t!” Kim replied.

What had begun as a legitimate debate soon deteriorated into a test of wills.

Last week Kim received a letter from our primary care physician indicating that she was due for her annual physical. I informed Kim of the correspondence, and she was rather dismissive. “Yeah, whatever. I’ll make an appointment when they refuse to fill my prescriptions.” Yes, our doctor has been known to hold our prescriptions hostage if we don’t come in for a physical.

Kim’s attitude toward these annual checkups is not an uncommon one. Like so many people, she has no pressing health problems (that we know of) and is a very busy person. My understanding is that annual checkups are not as much fun for women as for men. I’ve seen the stirrups. Nevertheless, I just couldn’t let it go.

I argued that physical examinations are even more important as we grow older (perhaps an ill-advised tactic). I brought the letter over to her, and while channeling my inner male chauvinist (another ill-advised tactic) I demanded, “Call the doctor’s office right now and make an appointment.” I sat there, alternately staring down at the letter and up at her eyes, so as to indicate my resolve.

Unafraid, undaunted, and unimpressed, Kim pushed the letter back toward me and said, “No. I’ll do it when I feel like it.”

I slid the note back toward her and made that threat, “If you refuse to do it yourself, I’ll do it for you.”

“Oh no you won’t!”

“Try me.”

“It doesn’t matter, because the doctor’s office will never let you.”

“I guess we’ll find out, won’t we?”

I did it. I contacted the doctor’s office and they allowed me to make an appointment for Kim, no questions asked. I felt like the secretary to an important person.

My important person became steaming mad. “What you just did is not okay.”

Kim determined that my punishment was approximately one hour of the silent treatment. The tension in the room was palpable, but eventually it dissipated. Since that time we have made our respective cases to several impartial people, but few are foolish enough to choose a side. We each stand by our original positions.

As I began writing this account of the confrontation, I had to ask myself why I felt so strongly that Kim should make an appointment sooner rather than later. As I said, I didn’t suspect that she had any particular, underlying medical problem. That wasn’t it. Of course I have immense love and compassion for my wife. That was obviously a major factor. Given my own medical situation, I’m more aware of the effect that health problems can have on a person’s life, and the importance of frequent and open communication with your medical team. I go to these appointments with a long list of issues, many of which are addressed at least to some extent during the checkup. These experiences definitely influenced my desire to have Kim hurry up and schedule her annual physical.

But if Kim wasn’t both my wife and my caregiver, and I didn’t depend on her so completely for my personal well-being, would I have been so insistent? In the heat of the argument I truly felt that I occupied the moral and altruistic high ground. But was I also motivated by self-preservation, at least a little?

Like so many arguments, this one was a mosaic of legitimate concerns and questionable tactics. There were plain statements and hidden agendas, genuine concerns and shameless posturing. Even though intentions were good, communications were flawed. In the end, however, this was above all an argument from love, and that’s the most important thing.

Potpourri

It’s becoming more and more difficult for me to don my winter coat, even with assistance, especially the part where I try to stuff my arms into the sleeves. So I bit the bullet and ordered this ridiculously expensive winter Cape, which has no sleeves. Once I try it out, I’ll give you a review (picture on right). Who else wears a cape: Batman, Superman, the magician at your child's birthday party.

Marie Suszynski at Everyday Health published a column called Nine MS Myths, Busted. Myth 2, “Everyone with MS Ends up Severely Disabled”, and myth 9, “Everyone with MS Will Quickly and Steadily Get Worse,” are sadly ironic for me. But the rest of the items are pretty sound. Thanks to Stu's Views & M.S. News for this link.

Apple’s iPhone has an abundance of accessibility features. Click here for a summary.  I also came across this article in USA Today a couple of days ago: Five Things You Had No Idea Your IPhone Could Do. I'm going to try #1, and I've already started using #3. (sorry Al)

Maintenance and parts support for the iBot will expire on March 31. I know people are still working on saving the iBot, and I have my fingers crossed. I wasn’t aware that Dean Kamen brought the iBot on the Colbert Report way back in 2006. Watch this clip – very entertaining. Thanks to Cynthia and Charles Riordan for the link.

Here’s a TED talk that everyone with a brain disease, like MS, or anyone who knows someone with a brain disease should watch. Siddharthan Chandran: Can the Damaged Brain Repair Itself? I have little doubt that medical researchers will find a way to repair the damage done by neurological diseases, but will it be soon enough for people like me?

Finally, I wanted to let you know that I have been asked to write another “Men with MS” column in the magazine MS Focus. It will be in the spring issue, and I’ll let you know when it comes out.

Some Things I Miss (and a Few Things I Don’t)

Things I Miss

1. Walking (obviously) 

As a wheelchair user, I’m not only missing out on little slices of life due to accessibility issues. I’m also denied the many health benefits of walking. Every so often I stumble upon an article highlighting the importance of getting up and moving, like this one: Too Much Sitting Linked to Chronic Health Problems. I’ve grown to despise these reprimands. I get it already! Eventually, they all read the same to me – “Get up and walk, you lazy piece of shit, or suffer a horrible, untimely death.” 

Sigh. 

I also miss out on other health benefits. According to this article entitled Mental Benefits of Walking, putting one foot in front of the other reduces mental decline, lowers Alzheimer’s risk, improves sleep, lightens the mood, and can even serve as a form of meditation. 

I enjoy accompanying people on their walks, although it just isn’t the same for me as it is for them. But please, continue to invite me along. 

2. Helping out 

Whenever someone encountered difficulty, it was in my nature to step in and help out. Kim couldn’t reach something on a high shelf; I would get it for her. Neighbor got stuck in her driveway during a snowstorm; I pushed her car. Friend bought a new dishwasher; I helped him carry it into the house. Today I am only a powerless bystander. I realize that I’m still helpful in other ways. For example, I manage our family finances and dispense husbandly and fatherly advice, perhaps too liberally. And I understand that I’ve taken on new roles with my MS advocacy. But I miss being able to just step in and lend a hand when needed. 

3. Typing 

Dragon NaturallySpeaking is a lifesaver. It allows me to put words to a page without the use of my hands. However, I still miss typing, for a few reasons. First, our house has an open layout. When I'm dictating to my computer everybody within earshot knows what I'm saying, and that doesn’t work for me (other than the most mundane tasks such as responding to a straightforward email). Second, I had a pretty decent respiratory cold last week and didn't feel like speaking to anyone, let alone my computer. Third, Dragon is only about 95% accurate. This may seem impressive, but keep in mind that a typical blog post is about 1000 words. That means I have to find and repair about 50 errors in each post. 

Although Dragon NaturallySpeaking is a wonderful thing, it’s just not the same as typing. 

4. Spontaneity 

There a lot of things I can no longer do. The remaining activities all require a certain amount of planning, or unusual attention to detail, or both. Travel, dining out, going to the ocean, even having sex, requires forethought and preparation. Sometimes, knowing that there is planning to be done is enough of a barrier to discourage the activity altogether. I’m engineery, so let’s not pretend that I ever led a carefree life of whimsy. But I do miss the modest amount of spontaneity I used to enjoy. 

5. Having a career 

I was not a workaholic, and I'd be lying if I said I loved going to work each day, but having a career was personally fulfilling. I always played an important role in the companies I worked for, and people seemed to want me on their teams. I miss the feeling of usefulness that came with my career. I also miss the travel, and the money. 

6. Being away from Kim 

Please don’t misunderstand. If you've been reading this blog you know that I love my wife dearly, and that even before my disability we spent most of our free time together. However, there were certain activities that I enjoyed which required that I be away from my wife. Some of these, such as going with the guys for a hunting or sports weekend, are not practical for me anymore. I need Kim’s help just to get through the day now. Similarly, Kim used to get away for professional conferences and the occasional ladies weekend. At the moment we have no procedure in place for anyone other than Kim to be my caregiver. We should, but we don’t. Kim and I can’t be apart for even a single night. 

7. Playing sports and games 

When I was diagnosed at age 38, I wasn’t playing in any men’s sport’s leagues. But I was active. I could shoot a little hoops, play catch, ping pong, bean bags, billiards, Wii, foosball, etc. I was competitive, and won my share of contests. Online cribbage and Words with Friends help, but they don’t satisfy my need for play and competition. 

But I Don’t Miss

1. Golf 

MS gets the credit for rescuing me from a game that cost too much money, required too much time away from my family, and left me miserable more often than not, except for that hole in one. (Please don’t send me links to handicapped golfing websites.) 

2. Dancing 

I always hated dancing. Now I can’t. (Please don’t send me ideas for ways that I can dance in my iBot.) 

3. Swimming 

I could swim enough to keep from drowning, but it was an activity I never enjoyed. We had swimming pools in two of our houses, and they were wonderful for the kids. I may have jumped in 5 or 6 times per year. I never found that the discomfort of having water get in my eyes and up my nose, or the initial temperature shock, were enough to warrant the meager benefits. I don’t miss swimming. (Please don’t send me links to handicapped swimming sites.) 

4. The bullshit part of my career 

As I mentioned above, having a career was a partially rewarding experience, which I partially miss. However, I cannot count the times that I had to deal with absolute bullshit at work. The problem was not tyrannical, immediate supervisors. Most of my bosses were excellent mentors and all-around good eggs. But that didn't stop them from asking me to do stupid things, for stupid reasons. More often than not this was the result of upper management feeling the pressure to meet month-end, quarter-end, or year-end goals. Satisfying this urge usually required the temporary suspension of sound business practices (like customer satisfaction). Once you start playing this game it becomes self-perpetuating, an endless loop of jumping through hoops. 

Fulfilling? Not so much. (Please don’t send me links on how to overcome my disability and reintegrate into the workforce.) 

For my healthy readers, what do you think you would miss most if you had MS or a similar disease? For my disabled readers, what is it that you already miss? What don't you miss?

Note: My longtime readers may recognize this as similar to a post from October, 2010. I made significant updates and improvements, however.

It’s Not the Disability, It’s the…

(Photo credit: Wikipedia)

I’ve accepted that I can no longer walk, and I’ve adjusted to the constant fatigue and the failing memory. Kim and I have developed strategies for all sorts of activities of daily living, so that I can be showered, shaved, dressed, etc. Everything this damn disease has thrown at us so far we’ve handled, and pretty well if I do say so myself.

What wears on me, however, is this gradual, pervasive disease progression. Once or twice I’ve been able to temporarily slow it down, but it always comes back. Of course I’d like to reverse the path of this illness and actually get better. But that’s not necessary for me to enjoy a fulfilling and relatively stress-free life. If my condition would just stop deteriorating, I’d be perfectly content to live the rest of my life with my current level of disability, or even some greater level. But that deal is not on the table.

It’s this damn worsening disability, this insidious wasting away that threatens to shake my resolve. Whatever I do, it’s never enough. MS cannot be placated. It demands so much of me, and then it demands more.

You often hear, “It’s not the heat, it’s the humidity.”

I say, “It’s not the disability, it’s the progression.”