Wednesday, February 26, 2014

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.” 
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.
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Tuesday, February 18, 2014

It’s Not the Disability, It’s the…

This is the internationally recognized symbol ...
(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.”
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Tuesday, February 11, 2014

What Do I Do All Day? I Obsess over Our Finances

(Photo credit: Tax Credits)
This is the eighth in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.
To say that I obsess over our finances may be too harsh. I’ll describe what it is I do, and you can decide what to call it.
My primary tool for managing our finances is a program called Quicken. I have 18 separate accounts in Quicken, including: savings, checking, cash, PayPal, various credit cards, mortgage, auto loan, etc. I periodically reconcile these accounts against statements from the various financial institutions. I don’t dread this activity. In fact it often leaves me with a warm, fuzzy feeling on the inside. The spending and income within those accounts is broken into approximately 80 categories like: Kim salary, automobile repairs, clothes, groceries, natural gas, Zach tuition, retirement plan contributions, federal taxes, etc.
Okay, obsess is beginning to feel more and more appropriate. But I’m just getting started.
I track additional aspects of our loans and investments, and our gas and electricity usage separately in Excel spreadsheets. Sometimes Quicken just doesn’t give me the level of detail that I desire (after all, I need to justify that MBA I spent years of night school completing).
I pay all of our bills electronically, using a variety of methods. In recent years I finally succeeded in ditching the traditional checkbook. That’s a good thing, since I am unable to write with a pen anymore, other than scribbling my name illegibly on the signature line.
In recent months I’ve had the pleasure of helping Amy manage her student loans, which will enter repayment status soon. I’ve offered to furnish her with her own copy of Quicken, but so far she hasn’t shown an interest.
Once a year, about this time, I also compile something I call “The Sturgeon Family Annual Report.” In this document I summarize income, spending, cash flow, insurance, loans, net worth, and more. Why do I do this? First, I can’t imagine how any family could keep its financial house in order without a periodic look at the big picture. Second, this report becomes available for Kim’s information if I should die, or for our kids information if we should both die. Third, it’s just great fun.
Fun? Sure. For example, because of this analysis I know exactly how much money we spent at our local pub, The Snow Squall, last year (only $979, it was an off year), or at Trader Joe’s ($551). Because of my obsession, I also know how much we spent on clothes ($1,359) and veterinary bills ($1,116).
I rely heavily upon this information whenever we face important financial decisions. However, I don’t use this data to manage or control our day-to-day spending. I don’t develop or attempt to enforce household budgets. We are both frugal by nature, Kim more than I, and so I don’t need to do much along those lines. I’m like Jane Goodall studying the great apes. I find our behaviors fascinating, but I only observe. I rarely engage.

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Tuesday, February 4, 2014

10 Things I Have Come to Understand in My 50 Years

Bonus time.
(Photo credit: hfabulous)
I’ve learned so many lessons in my first half-century. I suppose this is true of every 50-year-old, but only a few of us have blog space to fill up with such ponderings. So, in no particular order:

1. Even if I were to die tomorrow, I win.
To have been born at all completely defies the odds. That’s why ever since my birth I’ve been living on bonus time, and so have you (since your birth). This continued existence of ours- it’s just icing on the cake.
2. The fact that a belief is widely held does not make it a fact.
The earth is flat, 6000 years old, and is the center of the universe. Separation of church and state is wrong. Slavery is morally justified. Women should not vote. Separate but equal is a fair compromise. Tim Tebow may be unorthodox, but there will always be a place for him in the NFL.
3. Listening is more important than speaking.
I realize that this is in easy statement for an introvert to make (if any statement is easy for an introvert to make).
4. Having an open mind and being contemplative are assets, not liabilities.
For reasons I cannot understand, we apparently want our leaders to be opinionated and inflexible, and they must never flip-flop. At least that’s how we vote. In reality, the most thoughtful and effective leaders are the ones who are comfortable saying “I don’t know”, or “I’ll have to think about that” once in a while. My problem is, very few of those people show up on the ballot.

Thankfully, however, many of those people show up at my happy hour. So that’s something.
5. Similarly, most people think they know way more than they actually do about how the world works.
The human brain does not cope well with ambiguity. We therefore construct models in our heads of how the world works, creating the illusion of certainty and predictability. We feel compelled to bridge our knowledge gaps with reasonable assumptions, best guesses, and large helpings of complete bullshit. In most instances the knowledge gaps would be best left unbridged. The fallacies that result from these errant models are at the root of most conflicts in our society.

It is a sign of great intelligence to acknowledge one’s ignorance (if I’m not mistaken).
6. There is a fine line between confidence and arrogance.
The first one is appealing and represents a strength. The second one is ugly, and represents a weakness. I admire people with confidence, something that I often lack. I do everything I can to avoid arrogant people. Yet, I sometimes confuse one for the other. It takes careful observation and a certain amount of patience to be sure which one you’re dealing with.
7. We need each other.
We are social animals. Other than the occasional, functional hermit, every human being relies on a network of other human beings. The people who are most successful and happy in life are not so stubborn as to underutilize their network or so shortsighted and uncaring as to mistreat it. They cultivate their relationships, and realize mutual benefit.
People who spend an inordinate amount of time at home, such as disabled folks, often benefit from an online network too. But this can’t replace the need for face-to-face, in-person relationships.
I could to do a better job cultivating both of my networks.
8. “You make your own luck” applies primarily to the lucky.
It’s comforting to think of the world as a meritocracy – you get what you deserve. This idea is primarily espoused by two groups. First, there are those who have been the beneficiary of good fortune themselves. Second, there are those who hold on to the notion that there is a scorekeeper somewhere, doling out appropriate rewards and punishments despite the overwhelming evidence that bad things keep happening to good people and good things keep happening to bad people.
I accept the idea that a lack of effort lowers one’s chances of becoming prosperous, and that expending effort raises one’s chances. I certainly appreciate the importance of hard work and accountability (ask my kids). But I cannot accept the notion that people necessarily deserve their lot in life.
Admitting that our successes and failures are largely due to one form of luck or another allows us to have empathy for the less fortunate, and discourages us from idolizing the more fortunate.
9. We are stronger than we think.
Resilience is an almost universal human trait. People often don’t appreciate their strength until circumstances demand it. I’ve seen this time and again. I’ve lived this.
You will eventually discover how much you can endure and all that you are capable of accomplishing, if you haven’t already.
10. Things are generally not as bad as they appear to be.
“The reason people find it so hard to be happy is that they always see the past better than it was, the present worse than it is, and the future less resolved than it will be.” Marcel Pagnol
These are wise words to live by. But eventually things are as bad as they appear to be, and we die. Even then, see item 1, above.
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