It’s hard to know which events inform our reality and which only mark the passing of time.
Waking up in the hospital with a brand new feeding tube on board was clearly one of the former.
But there I was.
I had resisted repeated proposals from medical professionals to have a g-tube inserted. They warned of the worsening dysphagia I faced due to the effects of radiation for throat cancer I’d had years earlier.
Finally, home alone for a week – my wife visiting family in Florida – I faced a crisis. My esophagus closed down for business altogether. I couldn’t swallow anything, and by day 4, I had lost about 15 pounds and was terribly weak. So it was off to the ER, and then the OR, for the g-tube.
As I worked my way through the post-op haze, a well-meaning speech therapist visited and informed me that I was lucky indeed. Now, she said, I could get all my nutrition through this feeding tube. The product to be consumed, something like Ensure, would be delivered to my door, and I probably wouldn’t even have to pay for it!
Wow, I thought. Even with the dysphagia, I had looked forward to meals in restaurants, family dinners at home, milkshakes, ice cream. Now, all of this would be accomplished through a tube they’d installed in my stomach.
A moveable feast indeed!
For the next few days in the hospital, I was fed by the “gravity method,” with the nurses doing the work. When I got home, like most of us, I undertook “bolus feeding” (also known as gravity syringe feeding, the most common home feeding technique), with some trepidation. But I proceeded with an enormous sense of discipline in each and every step, and with lots of assistance from my wife.
Also, like most of us, I gradually started to handle the protocol myself, becoming quite adept at bolus feeding, incorporating it more smoothly into my daily life.
As I saw it, I had two choices. Either sit around and feel sorry for myself or embrace this and get on with it.
I have a wife, two grown children, four grandchildren, and a cat – all of whom from time to time count on me for something. And I have a fairly busy law practice to maintain.
I had no choice but to embrace this new situation.
The first challenge was at my health club where I worried about the appearance of my noticeable apparatus as I showered and dressed with my friends. For a while I tried to partially mask the stoma and the apparatus using various vapor barriers, finally trying some industrial-strength Saran wrap.
Then I threw caution (and the Saran wrap) to the wind. Now I wear the apparatus quite nonchalantly. I think it looks good in the shower, and I frequently sit at the table in our lounge area to ingest a can or two of Jevity when I have an afternoon off.
Next, people kept asking me to meet them for lunch, or for coffee, which meant going to a café or restaurant. Both personally and professionally, I had a strong inclination to continue to engage in these activities.
Shortly after deciding I would have to get on with things, I designed a stick figure man – a happy fellow with his g-tube and a can of Jevity attached.
I used the stick figure to sign notes to everybody around the house. I liked it and it became my signature. I named it Tubenmann, German for “tube man”.
Inspired, I took a Polo-type sweatshirt of mine to a seamstress in town and had her embroider my stick man as a logo on the front of it. I also had her insert a zipper on the shirt, over the spot where my tube is. This shirt design, I thought, would help me to once again fit in at cafes and restaurants by allowing me to access my Jevity or even coffee – right there – without calling undue attention to myself.
And so I did.
My first venture with my newly configured shirt was at a coffee shop here in Walnut Creek where I met an old friend from San Francisco.
We chose a table by the window, acquired our beverages, and I surreptitiously inserted a syringe into the feeding tube, which I’d accessed through the zipper on the front of my shirt. Then, just holding the syringe there in front of me, I was able to enjoy my coffee, calling little or no attention at all to myself.
This was an altogether fine experience, one I have repeated often since.
I wore the shirt on visits to my speech therapist, the talented Amy Lesico. And I wore it on visits to U.C. Davis professor, Dr. Peter Belafsky, as well as to my local doctors, Sam Sundar and David Lin. Together with their staffs, they unanimously applauded my shirt, calling it very cool.
Their clearly honest and heartwarming enthusiasm came as a complete surprise to me.
It seemed that something I had put together to mostly to entertain myself and in some way facilitate socializing for me had taken on a life of its own.
They are met with amusement, interest, enthusiasm, or most often, the garment is completely ignored as I go about my business wherever I happen to be.
I was fortunate enough to discuss all this with Ed Steger at NFOSD, and he suggested this article. So here it is. A brief account of how I, just one person, am dealing with the g-tube which I understand I will have for quite a long time.
I did not stop just with a few shirts for myself. I have gone on to make available a men’s and a women’s long sleeve polo shirt fitted with my useful modification. Visit www.tubenmann.com to see for yourselves and for ordering.
“It’s not just the shirt, it’s the attitude.”
Tom Dawson, Tubenmann