Dealing With Some Bad News

Ever have that sinking feeling? “I was supposed to do that… two days ago… I did it, right?” I get that feeling a lot. Usually, the answer turns out to be yes, I did it. But in this case, I was sitting, happily, at my friends’ house, cradling a glass of a very nice Balvenie Caribbean Cask in the afterglow of the latest episode of Marvel’s Agents of Shield, when I realized… It’s Tuesday. My blog and my podcast were supposed to be up on Monday.

What the hell happened to Monday? (I actually asked that question out loud.)

Well, I’ll tell you what happened to Monday. Five meetings happened to Monday. I missed one of them, and people were late to two of them, in one case more than an hour late. Happens a lot with me. Where I worked, we’re all overwhelmed and over-booked.

In and around five meetings and some news which made me really, really angry, helplessly angry, sadly, because I can’t change the thing I’m angry about and those who can change it just don’t care… Well, I forgot it was Monday and that I have a commitment to myself to get certain things done on Mondays. It’s not a good feeling to fall down on commitments to yourself because you’re overwhelmed by the bullshit of others. Ordinarily, Monday can hold both a normal workday for me (about ten to twelve hours) and enough time to write a blog and post a podcast. This Monday didn’t include more than a normal workday time-wise, but it just drained me. And, to be honest, the weekend before it, while it included some very fun social engagements with dear friends, had pre-drained me, because it also included a phone call from 911, a car accident, and the realization that something was very wrong in the life of someone very close to me.

So Wednesday came, and I took a few hours before work to get my blog written… while I wait for my son at the orthodontist’s office. I promised I’d find the minutes to get the latest episode of Phil’s wonderful book posted as well.

And then Wednesday evening came, and, again, life grabbed me, forced me to the ground and made me look at evidence that something was very wrong in the life of a loved one. Blogs and podcasts had to take a back seat. The next 72 hours were a blur. As the blurriness begins to clear, I’m left to do a lot of research and ask a lot of question. The first, most important question, sadly, is…

What exactly is Alzheimer’s?

I know it’s a class of dementia. I know it’s something that affects primarily the elderly. I know several family members far away have suffered from it. I know it’s not the easiest thing in the world to diagnose.

The quick and dirty is it’s a class of dementia. Having dementia simply means your mental ability declines to the point that the decline interferes with your daily life. For instance, you don’t know the date, where you are, where you live, or who your family members are. You get lost in familiar places. It’s not “what did I come into this room to do?” It’s “where is this room and who are these people?”

Or sometimes, as in the case I’m dealing with, it’s deceptive as hell. You know who you are, you know who everyone around you is. You know the date. You know who the President is. You have all the physical capabilities needed to walk unassisted, climb a ladder, or even drive a car at high speed… until you suddenly, momentarily… don’t.

According to the Alzheimer’s Association, it’s a class of dementia in which two of five core mental functions are noticably and significantly impaired: Memory, Communication and language, Ability to focus and pay attention, Reasoning and judgment, and Visual perception. Physically, it’s a disease, identified in 1906 by Alois Alzheimer, after he examined the brain of a deceased patient who had suffered dementia. He found plaques and tangles of tissues which were not present in a healthy brain. Unfortunately, there’s still no way to identify those symptoms in a living brain, so an Alzheimer’s diagnosis is never fully conclusive during the patient’s life.

So that’s the Internet-based research perspective. For each patient and each family member of a patient it’s going to hit differently. For me, there was a bit of hopelessness involved in learning that someone I love and see all the time has this disease. Death is one thing. Personally, I’ve always believed in life after death. I believe that the intelligence continues in some form. Part of that is, no doubt, because I was raised in a Christian Church and that’s what I’ve been taught. Part of it is because I simply can’t conceive of something as complex as a human intellect simply shutting off or burning out like an electric light bulb.

So my thoughts on death are pretty clear to me: If there is life after death, then I just have to wait to see what’s next. If there isn’t, then when I die, it won’t matter to me anymore. And, if there isn’t, then the loved ones who go before me will be alive in my memory. Fictional characters come alive for me. So do the people I’ve lost to death. I still register their personal identity and existence in the mental fabric of my reality.

But suppose there is some form of continuance after death. What if, before you die, something happens that robs you of memories, of judgment… Are you still you?

This is an important question to me. What is identity? Where is it? What percentage of it is your memories, what percentage the thought algorithms that drive you to make decisions the way you do (your operating system), what percentage is instinct (your firmware?) and how much is, dare I say it, spiritual? Beyond understanding, beyond the scope of what can be quantified physiologically?

I’m an individualist, from a long line of the same. In my family, we question and actively resent authority. We see that often mediocre people who are working from a dumbed-down list of instructions are in positions of power, and we know that’s not the way it should be. We don’t want to take orders from people who aren’t at least our intellectual equals, and it ain’t easy to win the title of “intellectual equal.” You pretty much have to pry it from our cold, dead hands. We’re proud. Hell, we’re freakin’ arrogant, but we know who we are. We have a stronger sense of self than a lot of those around us. We like to make our own decisions and control our own property and destiny.

Alzheimer’s is a disease that, when given time to progress, robs you of memory, or the ability to make decisions, and, dammit, it robs you of freedom. You can’t control your destiny or property because you’ll get hurt or hurt others if you try. Eventually, you can’t drive a car, because you might kill yourself or someone else. Eventually you can’t be trusted with money or credit because you might give it all away. You’ll be easy to swindle. Robert A. Heinlein once said that you can’t swindle an honest man. He has to have larceny in his heart to begin with. I’d like to amend that. You can’t swindle a mature man… or woman. You can swindle a child, or a physical adult who never learned that you can’t have something for nothing (a permanent adolescent, a career victim, someone looking for a handout, not a hand). You can swindle an elderly person who is suffering from this horrible disease, because, even if they once knew that something that sounds too good to be true probably is, they’ve forgotten. That’s not dishonesty. That’s poor judgment. Alzheimer’s takes judgment away.

So, when something like this disease has worked its dark magic on you… are you still you? That’s the question that scares me, and tends to make me feel a little hopeless.

Am I afraid of this happening to me? Of course. Am I preparing? Have I learned from what’s happened around me? Time will tell. I’ve already promised my kids that we’ll pick and age after which they can tell me to stop driving (of flying the car–where’s my flying car? It’s 2013!), provided they hire me a driver. But, if this happens to me, will I feel alone? Will I feel I can’t ask for help? Will I still be me?

All I can say right now is that this stresses for me the importance of remembering that life is a journey, not a destination. Too often I’ve seen others, and I’ve seen myself, frantically rushing for the next destination, oblivious to the fact that we’re not enjoying ourselves, oblivious to the fact that we’re making everyone around us miserable. (Some are even proud that they’re making everyone around them miserable. It means they’re in control of others. I blame poor toilet training.)

If life is just a series of destinations, what happens when you’re no longer able to make the trip? What’s left? How can you enjoy a life your forgot to build? As far as I can see, you can’t. And that’s sad. When something like Alzheimer’s hits you, it may be too late to change lifelong patterns and start enjoying what you have instead of what you’d like to get.

So I’m resolved to keep my connections to others open. At least, if someday I’m not all there, what’s left of me will still know that I’m among family and friends, and that maybe it’s okay for me to let them help me, since I’ve spent a lifetime helping them too.

And I’m even more determined than ever to take care of myself and not let outside stresses bring me down. During a particularly difficult time a few weeks ago, I made a sign for my desk at work. (Okay, it’s open on my screen right now, because I have printed it yet.) It’s contents are directed at those who get in my way, hold me back, or upset me. But it’s a message for me. It says:

• I will not let you cause me stress.

• I will not let you distract me from my goals.

• I will take the time to do the things I want to do.

• I will stop and be kind to others now and then.

• Your attempts to undercut me only hurt you. I will still accomplish. Everyone who matters will see that I’m delivering and you’re just posturing.

Those promises are part of the resolution to care for myself. I’m also remembering to exercise, not eat too much, and sleep. Interestingly, recent research has suggested that adequate sleep may actually help the brain break down and dispose of the toxins which cause senile plaque, and thus Alzheimer’s.

Does it sound like I’m making someone else’s illness all about me? Well, maybe. I assure you, in my handling of the situation, it’s all about the person who’s suffering. But you see, the person who’s suffering is the person I’ve tried all my life, sometimes unwittingly, to imitate. So when I see him suffering, I can’t help but put myself in his place, and try to prepare myself to carry the same burden, in the event it’s passed to me someday.

It’s hard to find hope when you’re looking at words on the page like “irreversible” and “incurable,” but I guess the hope is that you can look back on a life well lived. And, even if you have trouble looking back, others can remind you.

2 thoughts on “Dealing With Some Bad News

  1. Steven – sorry to hear about the diagnosis. My Dad has been suffering from dementia for the last year. It does take it’s toll on everyone in the family especially the caregivers. Thankfully you have a lot of family and friends nearby to help. Rely on your support network. My best to your family during this difficult time.

  2. Steven,
    I hope I always help, not hold you back. I hope I always promote your goals.
    I hope like Hell you will always have the intellectual GUTS to tell me when I’m being less-than-optimal with you, because I NEVER want to be less than intellectually equal (something that I may never achieve, considering how much I’VE ever written – but I try).

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