Adult Foster Care

Some twenty years ago--though it seems more like an eternity--my second wife and I lived in an operated an adult foster care home. We did this for about ten years of our marriage, finally escaping in the year 2000.

It was a hard job, doable only by personal compassion and grace from above. It was not an 8 hour a day job, but a morning to night job, day in and day out. The needs of unwell elderly people do not adhere to the pattern of a 40 hour work week.

On Sundays we often had the help of one or another substitute caregiver--generally terrified, rattled, confused young women who would decide within a week or two that they would be better off either to travel around the world or work at McDonald's.

We did not go out dancing on Saturday night, we slept, and closed all the doors to our section of the house, and pulled all the shades, and pretended we were not home. On Sunday we did not drive to the beach or go to baseball games, we went to church, mouths open like hungry birds, craving the food that would fill and sustain.

If I learned one thing about old people during those years, it was that I did not want to become one.

We had in the house anywhere from three to five people, depending upon how many had suddenly died and how many the State had been able to resupply us with. Edith, Ethel, Virginia, Donald, Grace. I remember.

To that point in my life, I had never been around older people. Both sets of grandparents had died before I was born. My mother was adopted and did not know her biological family. My father's tree had withered early on. Being thrust, therefore, into the constant company of these decrepit and somewhat smelly creatures seemed akin to having been dropped off on Mars.

On the first night of our residence I was awakened by a tap-tap-tapping on our bedroom door. My wife would not wake up, and I figured that if I ignored this knocking, it might just go away on its own accord.

But no, of course it continued, and was accompanied moreover by a voice now.

Hello? You? You? Hello?

And my wife would not wake. For all appearances she had either taken sleeping pills or simply passed away quietly in her sleep.

Well, I can handle this.

Struggling into my robe and slippers, I made my way through the dark of our bedroom toward the tap-tap-tapping sound. I would simply tell the woman to go back to bed. I would explain that it was the middle of the night. If there was some kind of mess out there, I would either clean it up, or if at all possible push it aside for my wife to deal with in the morning.

I opened the door, and there she was--Ethel, in all the glory and innocence of her original creation--in short, butt naked except for a pair of clunky black shoes, and of course her cane, which had been responsible for the tap-tap-tapping.

What in Christ's name . . .

"Ethel, what do you want?"

"Well," she said, "I don't know what I'm supposed to be doing."

And so you wander around the house naked? What kind of sense does that make?

"You're supposed to be sleeping," I said. "Ethel, you got no clothes on."

Worried, fearful, then indignant, Ethel surveyed her own sagging flesh.

"There's no one here," she said. "They took my clothes."

I was just wondering whether there would be any point in explaining the mutually negating structure of her statement when, praise God, my wife showed up at my side.

"Ethel, what the hell!"

She took poor Ethel by the elbow and led her away, back to her room, to where she was supposed to be, to what she was supposed to be doing.

So ended my first day and night as an adult caregiver. The good news, though I did not know it at that moment, was that we had only ten years to go.

The Poseur

When pride comes, then comes shame
--Proverbs 11:2

The trouble with being an accomplished poseur, while having a chronic incurable disease, is that you may end up convincing others that there really is nothing at all wrong with you--which is, by the way, something which others start out wanting to believe anyway. The efforts, therefore, that you make toward perfecting the appearance of function in both body and mind end up being all the proof they need to pronounce you as being in fact perfectly well.

At the same time, you have set a standard that you cannot ultimately hope to live up to. Failure is guaranteed, because success had never been any more than a trick of smoke and mirrors. Things happen, things come up. Suddenly you are called upon to function according to the competence you have pretended to, and the mighty fortress falls flat, having consisted of nothing but ashes to begin with. You disappoint not only yourself, but others whom you have fooled into faith.

You made your own bed, now sleep in it. That's what my mother used to say.

The poseur, who at the very base of things means to save his own pride and self respect, lays his own trap, nurtures the very revelation that he fears.

Failing oneself is always forgivable. Failing other people can be devastating.

We who have MS find ourselves in some sense running from what is already ahead of us.

The Man in the Mask

God has given you one face, and you make yourself another. ~William Shakespeare

I spend a lot of time these days masquerading as a normal person. And I'm becoming quite good at it, if I do say so myself.

You make various adjustments in your style of response, in what appears to be your baseline character. You become thoughtful rather than quick witted; you become deliberate rather than decisive. You learn to delay and divert, and you learn to reserve your mental resources in order to apply them to the expenditure of buying time--for you are continually behind the curve, continually catching up, and continually covering up.

I become therefore a magician. My tools are diversion and slight of hand. There is most certainly a bird or two up my sleeve. The competence I seem to possess is a product of sheer illusion.

I am a shape shifter and a changeling. I may appear to be the prince, but I am in fact the toad.

My secret, that which I so carefully intend to disguise, is stupidity, ineptitude, forgetfulness, sluggishness; all that is feeble, slow, dull, unworthy--a mental impotence that eats away at personal pride and self-esteem as surely as mice eat at the block of cheese.

Some people apply their efforts toward designing the latest rocket engine, some toward winning the Nobel prize. I apply mine toward the goal of thinking straight for five to ten minutes at a time.

I am not so much the man in the mask, as I am the mask itself.

Healed (Again)

Today I received my third faith healing. Getting kind of tedious, honestly. But what can you say? No thanks, I don't want to be healed? No, you pretty much got to do it, if only for the healer's sake. Who knows, if you turned them down, they might curse you instead.

I was feeling pretty good right at first, but then realized pretty quickly that I hadn't actually been healed, given that I couldn't think straight and my wife became angry at me because of it.

I guess maybe you have to go to one of the big shots like Benny Hinn in order to get a first class healing. Kind of like going to Johnny Cochran for legal representation rather than to the Howard brothers, Mo, Larry, and Curly.

The funny thing--and the thing that pastors do not appear to see-is that MS has been for me as much an instrument of healing than anything else. It is one of those ironies, so prevalent in the life of the spirit, that weakness ends up being strength, and sickness ends up being health.

And Jesus said to him, "See that you tell no one; but go your way, show yourself to the priest, and offer the gift that Moses commanded, as a testimony to them."

This is Christ--the God who exists without need of your efforts.

Happy Trails (or is it Trials)

Had my first Complimentary Customer Care Conversation with the Copaxone Consultants yesterday (too bad yesterday doesn't start with a C). You know, the ones where a representative calls in order to share how easy, and actually fun it is to inject yourself with toxic substances. Got my free products coming, of course--a durable plastic storage container for 30 glass syringes, another plastic container for travel, and a gel pack for injection sites. I was hoping for some Cuban cigars as well, but it looks like these are no longer being offered (if they ever were).

I also had the opportunity to rate various aspects of treatment and personal satisfaction on a number scale--1 equalling No, not really, and 4 meaning Yes, I love it!

When asked about my level of commitment to the treatment, I answered 2.

This apparently caused some red flags to shoot up with the interviewer.

Why 2? Are the injections unpleasant? Is there something we can help with? Do you believe you really have MS, or are you unsure? Do you need more literature about Copaxone?

No, it's just this irritating, unreasonable gut feeling that I cannot seem to escape--the feeling that somehow when ones body objects so strongly to the introduction of this or that foreign substance, it could somehow mean it's not a good idea.

Your body objects? How do you mean? Is there something about the injections that you don't like?

Well, I uh . . . .

Would you like to have one of our nurses visit your house?

No, I'm just saying . . . .

Are you having pain? Are you depressed? Do you have questions? Are you dizzy, breathless, confused, disoriented, having chest pains, gangrene, paralysis, loss of vision or function in any body part?

You know what? I wanna change that 2 to a 3. It's really not a 2 at all. I don't know why I said 2. It's more like a 3, honestly, or even a 3-1/2. In hindsight, I'm changing it to a 3-1/2.

Now that's more like it, Mr. Boughton. Keep yer chin up, will ya?

Happy trails to you, until we meet again . . . .

Fresh Off the Boat

Today two new foreign exchange students will be getting off the train, so to speak (or boat may be better) to shack up with us for a while--one from Japan and one from Saudi Arabia. Looks like I will have to make reservations for the bathroom for some time to come.

I know there's not much of a chance that they will be as invisible as Mamdouh was. He had a real talent for that, not shared by many (human beings). Though he has left us, he is still floating around town somewhere. Every once in a while he will call. Hi Richard. How are you. I'm fine. Maybe I come on Saturday. And that's about it. As can be readily appreciated, he continues to struggle somewhat with English.

But that's okay. I myself continue to struggle with Indonesian. Part of the problem is that the language includes both the official textbook word for a thing, and then also the word that is not in the books but which everyone actually uses.

Money for instance. The correct word, the one you will find in the dictionary, is uang. The word that is used in speaking is duit. I suppose it is rather like dollar and buck.

So perhaps we speakers of English are just as guilty as they.

So now our house is to become the battleground of four languages--English, Indonesian, Japanese, and Arabic--and whatever sub dialects there might be. Add in Labrador and Chihuahua, and this could become a bit confusing.

That's where Starbucks comes in. My table, my laptop, my coffee, my sanctuary.

Is It MS, Is It The Medication, Or Is It Just Life?

Such are the three questions we who have MS are continually confronted with. The neurologist may ask "Have you had any problems since I last saw you?"

Well of course. But should I be talking to you about them, or to my PCP, or to my psychiatrist?

Who knows?

Since switching from Avonex to Copaxone, for instance, it seems to me that I have been significantly more fatigued. Given, however, that fatigue is one of my enduring MS symptoms anyway, is this just an exacerbation of that baseline condition, or does it actually have something to do with Copaxone, or is it my lifestyle of late, reduced sleep perhaps, too much activity, not enough activity?

Who knows?

MS is a stealthy creature, elusive, secretive. It is fond of disguises and trickery. It is like the song once sung by the surviving gestational twin--You got my brother but you didn't get me, 'cause I was hidin' behind the left kidney

I've been feeling depressed, doc. But depression is not generally associated with Copaxone. Is it? Then again, it can be associated with MS, with nerve damage. And it is also associated sometimes with simple day to day living. Or the weather. Or the bad attitude of your mate. Or the bad attitude of the national economy, and the fact that your retirement has just been cut in half.

Exactly how excited are we supposed to get about injecting a treatment that hurts like hell and leaves saucer sized bruises on the skin?

Doesn't this seem counter intuitive--the notion that injecting a substance that elicits an immediate objection from the body is nonetheless a wise thing to do?

Or am I just being oversensitive, a grumbler and a complainer?

I'm tired, doc, and my right arm was paralyzed yesterday for 2 hours and 14 minutes, and my feet feel like bricks, and I'm continually confused and disoriented, and for some reason I'm kind of bummed out, ya know?

Who ya gonna call . . . ?