Tuesday, June 25, 2013

How Far I Have Fallen

English: Drawing of a falling/floating man
(Photo credit: Wikipedia)
One day last week during a transfer from the toilet seat to my wheelchair, I felt my body suddenly pitch forward, and I knew I was fucked.

It had been a couple of years since I had fallen. Back when I was a semi-walker, cane user, or scooter rider, I would fall more frequently because I was upright more frequently. Now that my only two positions in life are sitting or lying down, I rarely fall. It’s one of the paradoxical benefits of my creeping paralysis.

My most complicated transfer is that one from the toilet to my wheelchair. It is the long division of transfers, the Rubik’s Cube of disabled maneuvers. My movements are well practiced, however, and when properly executed this process goes off without a hitch. At this house, with this toilet, I enjoyed an unblemished record until last week.

The critical step in the process is when I reach with my left hand for the left armrest of my wheelchair. When that connection is made, all I need to do is pivot my body a little and drop backwards into the chair. Once, about six months ago, my hand slipped off the arm rest, but fortunately I fell right into the wheelchair. I wasn’t so lucky this time.

When my hand missed the armrest my entire body began nose-diving toward the hard bathroom floor. There was nothing for me to do except mentally brace for impact. I landed flat on my front side. I was somewhat shaken up from the fall and literally buzzing from the shot of adrenaline coursing through my veins. Nevertheless, I calmly began to solicit status reports from different parts of my body. I noted several areas of discomfort and irritation. Amazingly (if I was religious I might say miraculously), I didn’t sense any significant pain. Apparently, I had survived the fall very well.

As luck would have it my son Zach was home on his college break, and he responded to my request for assistance. The first thing I asked him do was pull up my pants so that my bare ass was no longer exposed. I’m not sure which of us was more relieved when that was taken care of. Next, I had him roll me over on my back and place a pillow behind my head. I reached in my shirt pocket, pulled out my cell phone, and called Kim at work. I knew that it would take two people and some ingenuity to get me back into my wheelchair.

imagesThe three of us brainstormed for configurations that might get me off the floor. Zach and Kim did some pulling and tugging on me, but it always resulted in pain in my shoulders or lower back. My body has become very stiff over the years, and any pressure applied in an unusual direction is not well received. Eventually I remembered that after my mother passed away five years ago we had taken possession of her portable Hoyer lift. My mother was a quadriplegic and used this device to transfer from her bed to her wheelchair and back again. I thought that someday I might need it for my own routine transfers. That day hasn’t arrived yet, but it was time to try out the Hoyer lift to solve this particular conundrum.

Kim and Zach rummaged through the attic and the shed, found all the parts, and assembled the unit. Kim rolled me on my side and laid the canvas sling under my butt. Ever so slowly Zach worked the lifting lever while Kim supported me. It wasn’t pretty – we didn’t really know what we were doing. But eventually I was high enough so that we could slide the wheelchair underneath me, and release the lift. We uttered a collective sigh of relief. Kim went back to work. Zachary went back to his video games. I went back to my beloved computer.

Perhaps a normal person would have been flustered, embarrassed, or disheartened by this experience. I’m glad that I’m emotionally stunted and not a normal person. As I’ve written before, I have a genetic predisposition toward emotional resilience. For example, at several points in the Hoya lifting process, much to Kim’s annoyance, I would call a time-out and have Zachary shoot a picture with my iPhone. Even in that stressful situation I was thinking ahead to this future blog post. In my mind, I imagined I would come off as outwardly composed and reasonably handsome throughout the whole episode. However, the photos instead revealed an old, fat guy who looked and felt like a beached whale. So I deleted them all. MS has taken so much from me, but a smidgeon of vanity remains.

So, how far have I fallen? An isolated event such as this one doesn’t necessarily signify new disease progression. In fact, given the complexity of this transfer, a fall was statistically overdue. I’ll simply try to be more careful during that critical part of the transfer, and maybe buy a couple more years before I fall again. If I’m wrong, and I am losing my ability to execute this transfer safely, then we’ll simply need to get creative. It won’t be the first time or the last time we’ve done that.
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Wednesday, June 19, 2013

It’s a Screwed Up World

"A hunter attacking a brown bear."
"A hunter attacking a brown bear." (Photo credit: Wikipedia)
I often feel frustrated with human kind, sometimes even ashamed of it. Because we hold on so tightly to outdated social concepts, I fear that future generations will regard us as relative barbarians. We are ever so slowly emerging from our primitive state, but things are still pretty screwed up.

What am I talking about? I’ll get to that in a minute. But first I want to present a list of issues that, although contentious, are not all screwed up. These debates have no clear answers, and never will. Wise people will always disagree about where, on the continuum of possible choices, we should find ourselves. For example:

1. Taxing and spending – what role should government play in providing services and supporting the less fortunate members of society? On one extreme are pure socialist policies. On the other extreme are pure market/capitalism policies. Where we ought to find ourselves on this continuum will forever be a matter of reasoned debate.

2. The balance between privacy and security - how much privacy should we be willing to give up in order to protect ourselves? Reasonable people will always present arguments that move us back and forth on the continuum between a police state and a completely open and vulnerable state.

3. What is a healthy balance between in-group loyalty (patriotism) and world citizenship? How can we embrace our cultural differences without alienating and eventually making war with others?

4. The balance between environmentalism and short term economic impact. These two are not always mutually exclusive, but they often are. We’ll continue to have healthy debates about the rate at which we consume our natural resources and pollute our planet in order to maintain a standard of living. The answer is somewhere in the middle.

English: Marijuana plant. EspaƱol: Planta de m...
Marijuana plant. (Photo credit: Wikipedia)
5. Drug legalization – would we be better off legalizing all drugs, some drugs, or should we double down on the so-called war on drugs? I suppose at some point this could become a completely resolved issue either way, but I more suspect that we’ll slide around on this continuum for the foreseeable future.

6. Should euthanasia be legal? If so, when and with what safeguards? Again, we may completely resolve this issue at some point, but in the meantime this will be an opportunity for reasoned debate between people who hold different positions. However, I would not consider it a reasoned debate if one group of people attempts to impose their particular religious justifications on another group of people regarding end-of-life options.

7. There are many similar, debatable issues such as how individuals are allowed to protect themselves (today’s gun rights debate), the pros and cons of employee unions, pornography and prostitution, etc.

In my mind, the above matters are complex, and will remain fluid as conditions and attitudes change. I find it intellectually stimulating to think about and discuss the above topics.

Below is a list of issues that, in my mind, require no more debate. The fact that we still have not settled them is evidence that the world is indeed screwed up. I have every confidence that a more enlightened, future society will look back on these debates in much the way that we look back on debates about slavery, using leeches to cure illnesses, and whether or not the earth is the center of the universe. In short, these are no-brainers.

1. Gay, or LGBT, rights. A certain percentage of people are born with or develop sexual orientations that are different from the majority. If the resulting acts occur between consenting adults, they are not unnatural, only unusual (maybe 2% – 5% or so). If your reason for being discriminatory has to do with your religious doctrine, that doesn’t excuse you. In addition to homosexuality, there are many other practices that the Bible forbids. These include eating pork, cutting your hair, and women speaking in church. Most religious people ignore these rules; why not ignore the Bible verses against homosexuality as well? If the reason that you discriminate against homosexuals is that you find mental images of homosexual sex acts to be revolting, as I admit I sometimes do, get over it. It’s your problem, not theirs.

2. The electoral college. This is a vestige from our early democracy, when the concept of one person – one vote was just a bit too radical to embrace. Let’s change this now. It’s an embarrassment.

A bible from 1859.
A bible from 1859. (Photo credit: Wikipedia)
3. Literal interpretation of ancient, religious documents. For example, there are members of Congress, some who sit on the House Science, Space, and Technology Committee, who believe that the earth is less than 10,000 years old. This belief is shared by approximately 46% of Americans.  Really, in this day and age?

4. Separation of church and state. Our generally religious founding fathers went out of their way to unambiguously establish a secular government. Yet, more than 200 years later we are still arguing whether or not we are a Christian nation. We may be a nation predominantly made up of Christians, but ours is clearly a nonreligious government. Clearly. If you disagree, read the Constitution. Centuries after our secular government was founded, over 34% of Americans would still like America to become a Christian theocracy.

5. Sexism. In large swaths of the world women are still considered second-class citizens or virtual slaves. The worst of this occurs in Muslim theocracies. To learn more about this read the books by Ayaan Hirsi Ali.

6. Birth control. The Catholic Church in particular, as well as other religious organizations, espouse the absurd and archaic belief that there is something morally wrong with the practice of birth control. I find the Catholic Church to be the immoral party in this debate. Their policy is contributing to the AIDS epidemic in sub-Saharan Africa, essentially killing thousands if not millions of people.

7. A true, universal healthcare system, and a medical/industrial complex that is geared toward patient well-being rather than corporate profit. Obama-care is only a small step in that direction. I don’t know how we’ll do it. Neither do I know how we’ll afford it. Frankly, I’m afraid our government bureaucracy will screw it up. But one day the quality of healthcare that a person receives in the United States will not depend on their pre-existing conditions, wealth, income, or employment status. Every other modern democracy has figured this out. We will one day as well, at which time we’ll find it hard to believe that we went without a proper healthcare system for so long.

VLADIVOSTOK. President Putin talking with Kim ...
(Photo credit: Wikipedia)
8. Totalitarianism – there’s a lot less now than there used to be, but the remaining dictatorships on the planet may be difficult to flush out. Perhaps the most extreme example is North Korea. If you have HBO, please go watch this episode of Vice, on demand. It will blow your mind.

9. There are many more issues such as terrorism, racism, alternative energy, etc. which are clear-cut and should have broad agreement by now, but don’t.

I’m confident that if we don’t destroy ourselves, and if we don’t plunge into some sort of a dark age ruled by radical Islamic Mullahs, for example, that one day we will find general agreement on these no-brainer issues. I wish I could live long enough to see that, but I won’t.
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Wednesday, June 12, 2013

Memories – Old Doc Gulesian’s House

From time to time I will post Memories, where I describe some facet of my life before MS. I hope you enjoy these digressions.

I grew up in the small, northern Maine town of Lincoln, where there were only a handful of doctors. Our family physician, who moonlighted as the town coroner, was affectionately known as Old Doc Gulesian. He delivered me, and I understand that my birth was very complicated. He operated the Gulesian Hospital in Lincoln from 1947 through 1972 in what was nothing more than a large house. Doc was a short, powerfully built, gregarious character. He often had a cigar in his mouth, but it was more for chewing on than it was for smoking.

His son, Doctor Gulesian the Dentist, was physically similar to his father, but less intimidating. Whenever I needed a tooth filled, and I needed a lot of them, he led me through the same routine. First, he would take a Q-tip with some gunk on it and set it beside whichever tooth he was going to work on. After a few minutes he would remove the Q-tip and say, “Close your eyes and cross your legs.” This never changed, and at no time did I peek, or even question why he made this strange request. I would feel a pinch in my mouth, and then Doctor Gulesian the Dentist would tell me it was okay to open my eyes. A few minutes later my mouth would be completely numb. I thought the numbness was from the topical anesthesia on the Q-tip. I didn’t learn until years later, when I watched him do some dental work on my mother, that he was actually taking a syringe and giving people a shot of Novocain. I was flabbergasted! A shot? Right in the mouth? To this day I still close my eyes when I see the needle coming.

1994 850 fall New houseThese father and son doctors lived across the street from one another on Transalpine Avenue. Old Doc Gulesian’s house was a sprawling ranch-style home. The full basement was expansive, and this is where he set up his medical practice in the 1970’s. There was a separate entrance for the basement office, so we never saw his above-ground living space. The carpet on the floor of the examining rooms was memorable. It depicted all sorts of board games like chess, checkers, and backgammon. I visited his office many times in my childhood, and never forgot that carpet.

After high school I went away to college, got married, and lived for a while in Ohio and Vermont. But eventually Kim and I returned to Lincoln, where I went to work as a chemical engineer in the local paper mill, and Kim began her teaching career. We bought a home and started making babies. Our extended families lived nearby, and we had many, many friends. It was an ideal situation – until we got sick of it. But that’s another story.

Kim’s mother, Carole, dabbled in a few different vocations over the years. For a short time she was a real estate agent. One day she came over, and we thumbed through her listings book. We noticed that Old Doc Gulesian, now retired, was selling his house. I had only seen the basement office, never the inside of the home. I suggested to Carole that we pose as prospective buyers and that she show us the house. She could practice her selling skills, and we could satisfy our curiosity as to what Old Doc Gulesian’s living space looked like. It was shameless voyeurism.

The house was impressive, if a little dated. Old Doc Gulesian, after all, had become a very old man. There were three bedrooms and three baths on the main floor and one bath in the basement. There was an attached, heated, three-car garage. The backyard had a neglected but salvageable in-ground swimming pool, which was a rarity for this small town. One bay of the garage even had a maintenance pit that could be used when changing the oil in a vehicle. The house sat on two wooded acres in a nice part of town.

When we got home, Kim and I continued to talk about our experience. I dared to broach the subject with her, “What if we sold this house? Then we could buy old Doc Gulesian’s house. How cool would that be?”

In addition to being a wonderful property, there was also a certain celebrity appeal to Old Doc Gulesian’s house. In our small town, buying his house would be like someone in Southern California buying a movie star’s house.

Things progressed quickly. Within a couple months we were able to sell our property and purchase Doc’s.

As soon as we moved in the house Kim and I went downstairs and explored the old doctor’s office, which hadn’t been used in years but remained intact. I basked in the nostalgia for a few minutes, and then I grabbed my chainsaw. I cut down all the internal walls to make a huge rec room. Over time, we purchased a bar, a ping-pong table, a billiards table, and added a couch and a television. The only thing we left untouched was that one-of-a-kind carpet depicting the board games. It kind of matched our motif.

For several years we would occasionally see Doc inch by our house in his big Cadillac, surveying the property but never stopping in to visit. I’m sure he had fond memories of the place, and apparently had trouble letting go.

We lived in Old Doc Gulesian’s house for seven wonderful years. Eventually the novelty of living in my childhood doctor’s home wore off, and it just became our house on Transalpine Avenue. If for no other reason than the sheer number of memorable photographs we took there, that house holds a special place in our hearts. Here are a few of those pictures…

1995 766 ish 1995 7701996 504a
  Amy 1996Amy, Zach, Ted- 1996Zach's 5th Bday- Vernice, Amy, Zach, Kim- XAlpine Ave house...Summer 1997
Amy, Ebony, Zach- Edwards St. House...December 2007 Amy, Robbie Porter- Basement of XAlpine Ave House...Summer 1997 Zach- first day of pre K- XAlpine Ave house...summer 1997
 Amy, Ebony- 1st day of 5th grade- 1999Kim the Painter- 06/2000

Wednesday, June 5, 2013

Musings of a Distractible Mind

images That’s the name of a blog I just found, thanks to my friend Alice. Dr. Rob Lambert, a primary care physician and the author of Musings of a Distractible Mind, lends us his unique perspective.

In most doctor-patient relationships, there exists an invisible wall. Although we generally admire our physicians, we often find them aloof, unapproachable, and hurried. It turns out that doctors are actual human beings, and they have fears and frustrations of their own. I don’t think the inherent problems with our medical/industrial complex lie with either doctors or patients. Dr. Lambert agrees, and in his most recent post, entitled “Doctor Scum Bag”, he lays the blame where it belongs.
…In our health care system we have a business where both ends of the transaction are miserably unhappy. 99% of doctors hate the health care system, and the 1% who like it are the ones to avoid. Patient dissatisfaction is nearly as high, skewed downward by people who have grown so used to the terrible system we have that they now see “terrible” as “average.” Is there any other business where both consumer and those providing the product are so unhappy? The reason for this is that someone else is shaping the system: the payers. 
I must admit, I am not sure how this can be fixed in any way other than a total disruption of the current system and replacement with one that is centered on people, not problems, on communication not documentation. Until we have a system that doesn’t reward sickness, sickness will be the reward we reap. I left the system because I didn’t think there was any way to continue practicing good care in it. While my new practice is far from perfect (consider the source), at least I am rewarded for taking time with people. 
To have any chance at building better relationships between doctors and patients, we need to face the painful reality that our system corrupts even those with the best intentions. So, I guess that would make it a “scum-care” or “health-scum” system? The sooner we face our ugly reality, the more the chance of bringing the focus back to where it should be: caring for patients… 
(click here to read the entire post)
In another post entitled “A Letter to Patients with Chronic Disease”, he writes:
Dear Patients: 
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality? 
I can’t imagine. 
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is. 
You scare doctors… 
(Click here to read the rest of this post)
Good stuff! I expect that I’m going to enjoy the musings of Dr. Lambert for a long time.