It's been several years since I received a fatal diagnosis. I'm not only still here; I'm feeling a little better. That often happens before your demise, but maybe this a good day that turned into a good week and who knows might turn into a good month. I'd love to think that some improvement now only means there may not be any end to my process of slowly dying. That might be unexpected. But when you're having this much fun, you just don't want it to end. At this stage, I'm semi-incontinent. This provides quite a bit of fun in itself. But gratefully, there is more.
1. Nodding off at the computer is unpredictable. I might wake back up in ten minutes or it might be an hour later. The dreams are vividly weird. But the best is when in your bouts of narcolepsy you unknowingly hit the delete key and then get something else to do in having to restore your work. It can truly fill in the day as long as you don't nod off again.
2. Another nice thing about the narcolepsy is that I can't drive myself for any distant travel. So, when I go Denver, I always have company. The only downside is when the company insists that I stay awake and talk to her. She'll talk about most anything except her sex life. That remains a mystery.
3. Being on oxygen is a blessing. It is a continual reminder of my limitation and dependence on God, especially when the hose gets caught under a chair leg, some other piece of furniture or the refrigerator. These moments allow me to ventilate my momentary rage, which I find to be very healthy. And as a bonus, carrying an O2 tank in public invites a lot of judgment and consideration.
4. I've learned by now that when I go all day having trouble catching my breath that I can instantly be relieved if I see that I hadn't been getting any oxygen because I hadn't switched over from the line that goes to the C-PAP machine. Also, I do believe that oxygen hoses were designed to kink on their own freewill. If not, there must be some magic involved.
5. I don't mind not having the ability to stand very long or walk very far. I hadn't planned on doing that much standing and walking in the first place. I have to use the wheel chair to get into the doctor's office. I used to wheel myself, but now I need help. You wouldn't believe how special this bonding time is for my wife, even after all these years. But I could do without the passive-aggressive way she runs my feet into the elevator doors.
6. I used to do a little food shopping on my own at the small store that is only 4 miles away. But now, I get all my groceries from the WHAT THE HELL DO YOU WANT THIS TIME? shopping service. Generally, this is really quite wonderful. Except I get a lot of unnecessary input like: That isn't on your diet, I brought you that last time, You just don't realize how much you eat, and If you want it, order it online.
7. Taking insulin is a privilege when I remember to do a BS test. Otherwise, it's like casting fate to the wind or Diabetes Roulette. But this is another thing that I keep winning at. I'm on a hot streak! If I can keep it up, I'm sure there's a really nice prize that awaits me. Until then, the occasional peanut butter sandwich will have to do.
8. Being asked how I am feeling never gets old, even when I sense that I'm only being seen as the sick guy who hasn't died yet. All questions seem to be couched in the context of, "Surely, it can't be too much longer." I like to reply that I'm still in the same old medical misery for which I get, "Tell me again... What's wrong with you?" Here my heart is gladdened with knowing they haven't been weighed down with the basic information about my suffering. Besides, you have to walk that lonesome valley by yourself. I forget who said that.
9. Oh Yes! ...Forgetting. Forgetting is perhaps what I do best. This just might be from getting older as a few of my other problems could. It's hard to place where the dying part comes in. Some days, life is a bit blurry. But I also have really good days. I try to tell myself not to overdue, but I usually do anyway. Some might speculate that I obviously do all of my writing on my blurry days. Which is partly true. On those days, I only write about politics and religion.
10. The last and most precious part of slowly dying is the pain. Having been at various levels of pain since 1985, one might I think I was used to it. I've heard of those who were graceful even though they had so much pain. Some were even grateful for the pain. Well, call me a slow learner but after all of this time, I'm still waiting on the grace part. ...But somehow I push through to where I can do enough to make it look like I'm living, as graceless as that may be. You are probably asking where the fun part is then. It's in taking enough narcotics to be relieved but not so many as to become a real asshole. ...I usually error on the asshole side.
Even with the limitation, difficulty, diet, pain, embarrassment, misrepresentation, judgment, and isolation, slowly dying can be even more fun when I remember the words sung by Louis Armstrong.
10. The last and most precious part of slowly dying is the pain. Having been at various levels of pain since 1985, one might I think I was used to it. I've heard of those who were graceful even though they had so much pain. Some were even grateful for the pain. Well, call me a slow learner but after all of this time, I'm still waiting on the grace part. ...But somehow I push through to where I can do enough to make it look like I'm living, as graceless as that may be. You are probably asking where the fun part is then. It's in taking enough narcotics to be relieved but not so many as to become a real asshole. ...I usually error on the asshole side.
Even with the limitation, difficulty, diet, pain, embarrassment, misrepresentation, judgment, and isolation, slowly dying can be even more fun when I remember the words sung by Louis Armstrong.
