(Photo credit: paparutzi)

This little blog brings me great joy.  I’ve been able to connect with so many wonderful people who I otherwise would never have come to know.  The notion that my writing has helped a few folks in any way is the icing on the cake.

Please check back in 2012 for more useless drivel, sarcastic
nonsense, blatant self-pity, amateurish videos, and (I suppose) the occasional
hidden nugget of wisdom.  I’ve got a few
surprises in mind already. 

And read disabled books
I contributed to a disabled charity
And thwarted disabled crooks

I sailed on a disabled cruise
And piloted my disabled iBot
I sat for disabled interviews
And the good disabled fight, I fought

I starved myself on a disabled diet
And took a disabled shot at a deer
I appreciated nature, and disabled quiet
And quaffed many a disabled beer

I hand-peddled my disabled bike
And hand-drove my disabled van
I spent disabled time with people I like
And I was a loyal, disabled, sports fan

I spent too much money on disabled wheelchair parts
And I made many a disabled friend
I touched a few disabled hearts
And a thousand disabled emails, I did send

It’s not that life is unfair
As you know, I’m not one to complain
You play the cards that are dealt you
If you live in the jungle, you better enjoy the rain

So during this holiday season
I urge you to seek out contentment
Don’t spend time searching for a reason
To feel self-pity, jealousy, or resentment

I’ll end my cryptic verse right here
And offer this sentiment to those most dear
I wish you a Merry Disabled Christmas
And a Happy Disabled New Year!

Of course my arms are not really growing shorter, but they might as well be.

My MS progression has not been random, but has instead followed clear patterns. For example, the flexion muscles in my legs (those that allow me to bend my legs at the knee) grew weak before the extension muscles (those that allow me to straighten my legs). My neurologist told me that this is typical of muscle control loss due to central nervous system failure. How interesting.

In my upper limbs, I’m losing strength in the fine motor area (muscles that allow me to write, type, and snap my fingers to big band music) before I lose strength in the larger muscles. Again, apparently this is typical. How nice.

But this blog post is about the muscles around my shoulders. I’m losing control of them in such a way that I can no longer reach things up high, but I can still reach things down low. This is the functional equivalent of my arms growing shorter.

I’m having difficulty shampooing and brushing my hair. Yesterday, I reached for the mouthwash, but I couldn’t raise my arm high enough to grasp the bottle, which was at chin level. I can’t high-five anymore. A gentle fist bump is all that I can manage as a shared, celebratory gesture for a Patriots win, a beautiful sunset with cold beer and close friends, or a cost of living increase in my Social Security check. Ya, that’s right. I got 3.6% this year.

When I first settled into a wheelchair, the height of my reachable world shrunk from around 7 feet to maybe 5 feet. Now it is down to about 4 feet. I’m like the mime in the invisible, shrinking box.

But I’m all about silver linings. For example, if it was my decision to make, I would definitely choose to relinquish the use of my hands at a higher level before I would at a lower level. Strength and dexterity for tasks above my shoulders is so much less important to me than below my shoulders.

In this regard, I feel fortunate.

On an unrelated note, isn’t it weird how we can accurately identify sarcasm in the spoken word, but struggle doing so with the written word?

As I mentioned in Home Improvements – Installment #1 and in my posts about moving, here and here, not long ago we relocated from the picturesque but boring suburbs into the urban and walkable (and therefore wheelchair-able) city. The house we found was one story and fairly accessible, with wide doorways and an open layout. This is the second blog installment describing how we’ve converted this potentially accessible house into one that is well-suited for my current disability, and hopefully for my future levels of disability as well.

Previously I wrote about access improvements to the house for the front door and the back door. Inside the house, though, the least accessible area was the master bathroom. It had a traditional tub surround that required an elaborate (and almost dangerous) procedure for me to get into and out of it.  The bathroom also had a conventional vanity that was impossible for me to get close to with my wheelchair.

We considered several alternatives for the tub. The obvious option, and the one that we employed in our previous house, was to hire a carpenter to build a custom tile shower to replace the tub enclosure. Another option was to use a company called Bath Fitter.  We chose Bath Fitter for a couple of reasons. First, the one-piece acrylic shower enclosure is lower maintenance than a tile enclosure. It is easier to clean, and it will never leak. Second, the Bath Fitter shower, as you may know from their commercials, can be installed in one day (more or less).

The Bath Fitter product was not inexpensive though. We paid about $5400 for the unit, installed. A similar tiled shower quote was approximately $1000 less, but it would have taken 7 to 10 days to install. I’m not sure what I would have done during that period.  Although Kim could have used our small guest bathroom, that shower is not accessible to me. Kim informed me, in no uncertain terms, that my going without a shower for a week or more was not an option!

How did people live with one another before modern plumbing?

When I consulted with the Bath Fitter salesperson in our home, prior to signing a contract, we came up with a configuration of plumbing hardware that would work for both Kim and me. As you can see from the photos below, we now have two shower heads, a stationary one that Kim will primarily use, and a hand-held unit for me. There is an easy to operate switch which diverts the water from one head to the other. We also decided on a couple of shelves, one for my soap and shampoo, and a corner shelf for all of Kim’s girly stuff. And of course I needed a couple of grab bars to help with transfers.

We couldn’t be more pleased with our new shower enclosure. It actually took two days to install instead of one, but that’s no big deal. I wasn’t happy with how the shower floor drained (it turns out that my concrete slab is a little crooked), so Bath Fitter came back later and re-leveled the shower floor at no extra charge.

All the controls work well for me. Transferring is going okay, although as my MS continues to progress we’ll need to come up with other adaptations to assist with transferring.

Tub Before

Shower In Process

Shower After

Next- the vanity. We hired a carpenter to gut most of the cabinet and to install some open shelves, with a large space in the middle for my wheelchair. Kim installed an easy-operating faucet for me, and lowered the mirror. Again, this project was a clear winner, and we couldn’t be happier with it.

Vanity Before

Vanity In Progress

Vanity After

The last project I’ll mention is not accessibility related at all, but I can’t help sharing it with you nonetheless. Here are some before and after pictures of our master bedroom. Kim replaced the ceiling fan herself. We purchased a new carpet and had that laid professionally. Kim chose some new artwork, curtains, and bedding, and of course she painted the walls in the bedroom (and bathroom).

Bedroom Before (previous owners)

Bedroom After

So now we’re out of money.  But luckily we don’t have much left to do. Kim plans to lay a brick patio outside our back porch in the spring. I’ll report on that in Installment #3, if Kim and I both survive another harsh Maine winter; if Congress doesn’t eliminate both Social Security and Medicare in order to balance the budget; and if we don’t win the lottery, hire a butler named Jeeves and a nurse named Destiny, and simply move to Hawaii instead.

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 about five 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.

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 childbirth. 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?

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.

Incidentally, reasons one, two, and three, above (the reasons why each of us are already operating on bonus time), are also appropriate responses to grumblings like “life is unfair,” and “nothing good ever happens to me,” and “what do I have to be thankful for?”

For a humorous and touching story of survival and renewed appreciation for life, watch this video clip.
 

(Photo credit: Wikipedia)

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.” – Douglas Adams

I’ve reached (achieved?) several major milestones in my disease progression, such as:

• diagnosis
• informing my loved ones
• starting and stopping various treatments
• using a mobility aid (cane) in public for the first time
• installing hand controls for driving
• buying my first wheelchair (iBot)
• leaving the workforce
• qualifying for disability benefits

and now…

• surrendering my driver’s license

If you are a regular reader of this blog, you know that I saw this coming from a mile away. I’ve predicted several times that my left hand weakness would soon prevent me from operating my hand controls. But in the end, it wasn’t only my left hand. It was the convergence of three separate impairments that did me in.

First, as expected, my withering left hand was having difficulty operating the brake and gas lever of my hand controls. I was increasingly compensating for my weakness in a couple of ways. I would habitually overuse the cruise control function, so as to rest my left arm more often. Also, I would routinely place the vehicle in park when I was waiting at a red light, again, to rest my left arm. I had learned to ignore the protesting horn toots I heard if I was too slow getting off the starting line on green lights.

Second, I needed to be able to transfer from my wheelchair to the driver’s seat. I am aware that some disabled drivers operate their vehicles directly from their wheelchairs, but I didn’t want to do that. In February of this year it was becoming nearly impossible for me to transfer from my wheelchair to the standard driver’s seat, so I invested part of my tax refund in a power adjustable driver’s seat, which made the transfer easier. In the last couple of months, though, my transfers were becoming problematic again, even with the power adjustable seat. This expensive adaptation only bought me eight additional months of driving.

The third challenge was one that I had not mentioned here before, and that I wasn’t even aware of until the last month or so. I used my right hand and arm to operate the steering wheel, by gripping something fondly referred to as a suicide knob. Of late, however, it had become increasingly difficult for me to make 90° turns as required at intersections, because of weakness in my right arm and hand. On my last couple of drives I even found myself briefly letting go of the gas lever with my left hand to assist my right hand in turning the steering wheel at intersections. This caused me to unexpectedly decelerate when negotiating certain right and left hand turns – sometimes at busy intersections. It would only have been a matter of time before somebody rear-ended me.

I’m aware that there are more extraordinary driving accommodations that I could still employ. For example, I know that I could drive using a joystick-like device. If my disability was stable- if I wasn’t constantly getting worse- then incorporating these adaptations might make sense. But enough is enough. It’s time to let it go.

So it was the confluence of these three factors that led me to the decision that I’d been dreading for months, maybe even years. However, because of changes that we’ve made in our lifestyle, most notably because of relocating to a very walkable neighborhood, this loss may not be as bad as I had once feared. The experience might be less than traumatic.

Why am I not more distraught? Have I compensated that well or am I simply becoming proficient at coping with loss? Probably a little of both.

This long anticipated day is finally behind me, and I didn’t injure or kill anyone in the process. I didn’t even have a fender-bender the entire 6½ years that I drove with my hands. I’m comfortable that I gave up driving neither prematurely nor belatedly. (Even if I did, would I admit it?)

There are several public transportation options available to me from my new house. I’m going to start trying them out. Rest assured that I’ll report back here regarding the experience.

So how do I feel about this loss? I’m experiencing several emotions, but chief among them is simply relief.

There. Done. Moving on.

(Photo credit: Wikipedia)

In the United States there is a progression of steps that one must go through to fully transition from a healthy worker to a disabled non-worker with benefits. In my case I was fortunate enough to have private disability insurance through my employer in addition to government disability insurance (Social Security).

In May of 2009 I stopped working and began the process of applying for both of these programs. Despite the horror stories I had heard, I qualified without difficulty. That was a mixed blessing. I certainly dreaded an ugly appeals process and maybe even being required to return to the workforce with my tail between my legs. But getting so easily approved was confirmation that I was, well, a hurting unit. That was the mixed blessing part. I wrote about my initial disability approvals here.

My private disability insurance is two-tiered. For the initial 2.5 year period I only needed to establish that I could no longer perform my current occupation. After the 2.5 year period, which ends this month, I would be required to meet a higher standard. I needed to prove that I could no longer perform any occupation for which I was qualified. This summer, well ahead of the deadline, my private disability insurance company buried me with a mountain of paperwork that my doctors and I needed to dig out from underneath.

We completed our documents, sent them in, crossed our fingers, and held our breath. A few short weeks later, we get the “good news” that I am so disabled that I can’t perform any occupation. As such, the insurance company is going to provide me with a monthly stipend until I’m 65 years old. Unless I get better, which is almost certainly not going to happen, this portion of my income will be the status quo for the next 17 years.

The other milestone that occurred 2.5 years after my last day of work, rounded off to November 1 of this year, is that I now qualify for Medicare, which is the public sector insurance most closely associated with elderly people in the United States, but also available to disabled people. So now I have low-cost medical insurance through the federal government. Not bad.

In terms of coverage, Medicare is very similar what I’ve always had through my employer, with one exception. My old insurance would only pay $3000 toward a power wheelchair, which is a ridiculously small amount. Therefore, my inside-the-home wheelchair, as opposed to my iBot which is primarily my outside-of-the-home wheelchair, is a very basic unit without many of the features that full-time wheelchair users should have. Now, with Medicare, I can own a power wheelchair that will in fact meet the needs of someone who spends 16 hours a day, seven days a week in a seated position. I just began that approval process, and I’m expecting a shiny, new wheelchair for Christmas (give or take a couple of weeks).

There is one disconcerting aspect of Medicare that I’d like to address here. As I explained above, there is a waiting period of 2.5 years after you stop working due to disability until Medicare kicks in. That was an inconvenience for me, but I was able to bridge the gap because Kim has private, family medical insurance available to us through her employer.

However, what if I had been the sole employed member of our family? What if Kim was a stay-at-home mom? What would we have done? This 2.5 year waiting period is something that I just cannot get my arms around. If someone goes on disability, it is almost certainly because they have a severe medical condition that requires significant, urgent, and expensive care. Yet, if the individual is no longer employed, which he isn’t if he is going on disability, then he has no affordable, private medical insurance and he has no public medical insurance. This is just crazy!

I have a friend, let’s call her Jill, who has progressive MS and is the only member of her family with medical insurance available through her employer. By all rights she should no longer be working. Continued employment can’t be good for her advanced MS. Yet she feels she has no choice, because if she goes on disability then there will be no medical insurance for herself for 2.5 years, and no medical insurance at all for her husband and children. This is just crazy!

Now that I have my permanent, private disability insurance approved, and now that I have Social Security income and Medicare, my situation appears stable until I reach age 65. At that point I will lose my private disability insurance, but Social Security and Medicare will stay with me until I die, hopefully at a ripe old age, and hopefully cured of MS (ha, ha, good one Mitch).

I may be overly optimistic. Given the budget cuts that are being considered by our federal and state governments, I could very well see my public sector benefits erode over time. But I have a suggestion. Let’s find ways to balance our budgets that don’t further disadvantage the most vulnerable members of our society. Wouldn’t that be nice?

When I started down this path 11 years ago, I knew nothing about MS. I didn’t know anyone who had it. I didn’t know how it could affect a person. Now, unfortunately, I’m a bit of an expert.

MS manifests itself differently in each person, but for me it has been a left-to-right and a bottom-to-top disease. Problems started in my left side and moved to my right side over time. Problems started in my legs and moved up over time. About three years ago, when both legs had become nearly useless, my upper body started to show the effects of the disease. Now my legs are dead weight, and the left/right game is being played out above the waist. My left hand is severely disabled, and although my right hand is far from healthy, it’s hanging in there.

Given that I’m right-handed, I feel fortunate that this will be the last man standing, so to speak. Of course nobody asked me 10 years ago, but if they had I would’ve preferred that my right hand be the final appendage voted off the island.

So what’s going on with my left hand? It functions kind of like a pair of pliers – a very weak pair of pliers. For example, I can’t grab a bottle of beer and drink it with my left hand, but I can pry my fingers apart, plop a bottle of beer in my lap, and keep it in place for a few minutes with my left hand. Now that’s useful!

I can’t use my left hand to help me open bags or bottles or cans or boxes. Those become single-handed tasks. It’s of no use to me for washing or grooming. I don’t use my left hand at the dinner table. It lies passive at my side. I’m able to make some use of my left hand for helping me to zip up a jacket. I can sometimes grip the bottom of my coat just enough to hold it down as I use my right hand to pull up the zipper. But I fear that this ability is short-lived.

Luckily my left hand is securely connected to my left arm. Although I can’t lift my arms above my head, for tasks below my neck my arms are still relatively strong. I can enlist my arms to raise my body enough to transfer from wheelchair to bed, wheelchair to wheelchair, or wheelchair to toilet, for example. When I do this, I again make use of my left hand like a weak pair of pliers. If my left hand can grasp something it tends to anchor my arm enough so that I can accomplish the transfer.

I use a standard, no frills, power wheelchair in the house. It’s more maneuverable than my iBot, and this allows me to save miles on my iBot and hours on its batteries. This chair only requires that my left hand can wiggle the joystick ever so slightly, and I’m still able to do that. Controlling my wheelchair with my left hand is preferable, so that my relatively capable right hand is available for all other tasks. The operation of my iBot, however, requires more hand dexterity and strength, because of all the buttons and knobs that I must manipulate in order to take advantage of the various modes of operation. Almost a year ago I relented and moved my iBot controller from the left side to the right side. Because my good hand is otherwise occupied, there’s no zipping down the sidewalk while enjoying an ice cream cone in my iBot.

This is all well and good, but the horrible part about MS is not so much what it has already done to you, but what it might still do. I look at my left hand and I know I’m seeing the future of my right hand. Despite the fact that I have a loving support system, adequate financial resources, and a resilient (if not sunny) disposition, and even though I won’t be the first person to ever face such hardship, it’s shit like this that keeps me awake at night.

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

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

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

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

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

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

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

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

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

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

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

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