I haven’t had a “good” day in months. What in the hell actually constitutes a good day? Now I’m thinking, this is probably my new normal which means if I’m not dying, it’s a good day. Therefore, 90% of days are good days. A good day and not feeling like I’ve been steamrolled, frozen in carbonite and set on fire all at the same time aren’t synonymous. I’m always in some form of what feels like a torture chamber, mostly because I’m a wimp with a low tolerance for my body’s BS.
It takes all of the mental and physical fortitudes I have to get out there and do something “for fun”. It stinks but that’s how it goes. Last weekend, as much as I wanted to stay curled up in bed, I felt compelled to keep MC company during his travels because it was our anniversary.
First, we went to Barnes and Noble to see if they had any of the books on my reading list in stock (only one was, B&N fail). I normally buy used books so getting a fresh new one to huff was a special treat. I ended up with The Immortal Life of Henrietta Lacks. I’ve only had it for a few days and I’m already finished. Not too shabby for someone with poorly behaved eyeballs! I had a difficult time putting it down – a good sign that it’s an awesome read, albeit a very emotional one. It’s part science, part human interest/cultural study and a complete work of art. (Don’t even try to watch the movie – it blows.)
Next up, Target has a wonderful candy aisle and happened to be two stores down, therefore a trip to Target was the logical decision. They’ve got anything you want covered in chocolate (a belated 4/20 homage to Johnna?), to include potato chips.
A woman standing in front of us at checkout was staring at me. I avoided eye contact but I could feel her gaze burning a hole in my face. I eventually locked eyes with her and she immediately asked me why I have a tube hanging off of my face. I was caught off guard and joked that you never know when you’ll want to go scuba diving.
It’s kind of funny, the difference between being an ‘invisible’ versus having outward, visible signs of illness. When I broke my ankle (thanks to the brilliant drop foot), outings often turned into a Q&A session with complete strangers.
“What happened? Does it itch? Does it hurt? How long do you have to wear a cast?”
I much prefer being invisible, as conversing with strangers sort of freaks me out. It was difficult to be inconspicuous in a wheelchair while wearing a bright purple cast. It’s also difficult to be inconspicuous when you’re in a wheelchair and you’ve got a tube hanging out of your nostril.
An oxygen cannula is universally recognized and I’ve never been asked why I’m on supplemental oxygen when I’m using it. On the other hand, I’ve gotten quite a few questions about my NJ tube and as annoying as it is, I figure I may as well attempt to educate people. It might save someone else from having to answer the same questions. In an ideal world, I’d have no problem doing this. The reality is that a stranger approaching me and instigating a conversation is way outside of my comfort zone. “Huh? What? Me?” 😮
Here are a few questions I’ve been asked (some by strangers, some by people I know) and how I wished I would have answered them instead of having my tongue tie itself into knots. Perhaps I can memorize all of this for future use, providing my brain becomes less slippery when I’m in the spotlight.
Q: “Why do you have a tube hanging out of your nose?”
A: For nutrition – I can’t maintain decent nutritional status thanks to having a gastric motility disorder called gastroparesis (partially paralyzed stomach) and inflammatory bowel disease. Doesn’t that sound absolutely delightful?
Q: “Are you allowed to eat normal food even though you have an NJ tube?”
A: Yes, I can eat. I can also walk down the street naked, but should I do that? Probably not.
The more complicated answer is that I can eat as tolerated but I have to be very careful because eating often leads to intense nausea, which leads to retching and harfing. Both of those can effectively pull the tube out of my small intestine and cause it to coil up in my stomach where it won’t do me any good.
Q: “So, if eating makes you nauseous, can’t you just take drugs for that or somethin’?”
A: Well, sure I can, yet it does nothing to help my stomach empty so I may not be as nauseated but after several hours of food fermenting in my stomach I find myself with an extremely painful knot that makes vomiting seem like a stroll in the park. Eventually, what goes down must go somewhere, so after several hours of pain and nausea, the result is exactly the same. Blaaaaarrrgh.
When I do eat, it’s just a sample to keep my taste buds happy. A piece of chocolate (or a chocolate covered tater chip), a pickle, a spoon full of honey, hard candy, etc. I also drink room temperature or warm beverages small amounts at a time. My primary source of nutrition and hydration is obtained through my tube with formula. I’m grateful that it completely bypasses my taste buds, because there’s no way it doesn’t taste like shit.
Q: “Doesn’t that (having a feeding tube) bother you?”
A: Fuck yeah, it does. It’s not comfortable. Too much talking makes my throat extremely sore and if it randomly rolls in the back of my throat, it can lead to gagging, which isn’t at all attractive. It also makes my nose run constantly. Ya know, since there’s a foreign object shoved up there 24/7. As much as it sucks, it’s a necessary evil.
Q: “Will you have to have it forever?”
A: I hope not but I don’t know. Nasal feeding tubes are a temporary solution because they can cause scar tissue build up in the sinuses and back of the throat. It also has a tendency to clog if I’m not overzealous with the warm water flushes. People who need some sort of permanent feeding solution, assuming their stomach doesn’t magically start working again, usually end up with a tube that is surgically placed in the abdomen to feed directly into the small bowel.
Being able to eat is a gift that most people don’t see as such. It’s automatic. We need to eat to survive. Food isn’t just nourishment for our bodies. It nourishes our souls (if you have one), minds (if you have one), and even our relationships/friendships when a special someone brings you a treat for the heck of it. Never underestimate the power of food. I sure do miss it.