Of Diapers, Catheters, and Other Unmentionables

 (This article was first published in the Asheville, NC Citizen-Times newspaper and is used here by permission.)

I have tried to be honest and open in these articles but I have been holding out on you. Partly out of embarrassment and partly unsure how to write about it, I have not told you that I have been wearing a diaper for several months. Well, not the same diaper for several months. More like a series of diapers. See what I mean?

My illness, ALS (Lou Gehrig's disease), causes muscle weakness throughout my body. This includes the external urethral sphincter, a voluntary muscle which, when contracted, shuts off the flow of urine from the bladder. My sphincter became weak and I became like the little boy who jumped from one foot to the other, trying to "hold it," but with decreasing success. I became "incontinent of bladder." In other words, I wet my shorts and my pants and the cushion I was sitting on. It was time for a diaper.

By the way, and off the subject, I read somewhere that birds do not have sphincters. When they have to go, they go wherever they are. So if you are ever the recipient of an unwelcome gift from the sky, it is not an act of God or a bird that dislikes you. It is an accident and the bird so far as we know may be very sorry. Don't take it personally.

I started wearing a diaper several months ago. The staff at my nursing home wants me to call it a "brief," but I refuse. I know what a diaper looks like from changing my daughters' diapers years ago. My diapers are exactly like theirs, except that they are not small, pink, or have cartoon characters around the waistband. Besides, a brief is what a lawyer writes. There is a lawyer joke here somewhere regarding the contents of these two kinds of briefs. I will resist.

The diapers worked well for a while. Then the muscle weakened more. The staff had to change my diaper two or three times a day and this was after foot jumping for several minutes. A couple of weeks ago I gave in to the inevitable and requested a catheter and a bag to collect my urine. There are two kinds of catheters. A Foley catheter is a tube goes inside the body and can be a highway for urinary tract infections. I chose the option of a condom catheter that fits over me. The inside of the condom has an adhesive that holds it in place. Fortunately, it is not super glue. A tube starts at the condom, goes down my leg inside my pants, exits at the bottom of my pants leg, and goes into a bag to hold the urine.

Frankly, this new arrangement is great. No more trying to hold it while jumping from one foot to the other. No more multiple diaper changes in a day. I am free as a bird to pee whenever I want!

The Worst and Best Things about Having ALS.

(This article first appeared in the Asheville, NC Citizen-Times newspaper and is used here by permission.)

The worst thing about having ALS is not being able to tell people, "I love you."

The best thing about having ALS is hearing so many people say they love me.

The worst thing about having ALS is not being able to walk.

The best thing about having ALS is people who take me where I want to go.

The worst thing about having ALS is leaving my daughters behind if I die.

The best thing about having ALS is knowing they will be okay.*

The worst thing about having ALS is not being able to walk and talk.

The best thing about having ALS is the technology that takes me where I want to go and communicate when I get there.

The worst thing about having ALS is the friends who have drifted away.

The best thing about having ALS is the friends who have stayed.

The worst thing about having ALS was believing God was absent and knew nothing of my helplessness, my inability to move, and my struggles to breathe.

The best thing about having ALS is realizing that God is with me and knows exactly what it is like to be helpless, to be unable to move, and to struggle to breathe.

The worst thing about having ALS is believing I may die.

The best thing about having ALS is believing that if I die, the battle will be over and a new day will dawn.

The worst thing about having ALS was believing I was all alone with the disease.

The best thing about having ALS is learning that the many others touched by the disease and I can support each other.

The worst thing about having ALS is believing that if I die, my life will be over.

The best thing about having ALS is believing that if I die, my life will continue in a better place.

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*About 10% of ALS cases are genetically inherited. These families can name several members who have died from ALS and anxiously await the diagnosis of one or more of their children. They cannot say, as I do, that their daughters "will be okay."