Every one of us has been hungry from time to time, maybe even experienced stomach-clawing, gut wrenching hunger, but we don't usually think of it as a disability. It may not be a disability unto intself, but I believe it is definitely an undercurrent of so many afflictions. And truth be told, the word I'm probably searching for is malnutrition but, at least for me, that is too difficult a word. Malnutrition is found in third world countries and refugee camps; it is not something that I ever expected to hear about my well-fed, very active daughter. Her doctor used that word exactly once, but that word still rings in my ear. It is still a dagger through my heart.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
A couple of years ago Kgirl2 had a sweat test, the first step in determining cystic fibrosis. The result was borderline, neither yes nor no. I asked her doctor if something other than CF could explain the results and without hesitation, he responded "malnutrition". Yikes. And although our focus has remained trying to get her to gain weight, he has never used that word again.
My daughter has both pancreatic insufficiency (fat malabsorption) and fructose malabsorption (malabsorption of, um, everything on earth). I wrote about FM for KosAbility at the end of January. At the time, Kgirl1 had been following the diet for about six weeks and we saw some instant changes. The dark circles under her eyes were gone. Her frantic mood swings disappeared. She gained four pounds (after two years of eating 3,000 to 3,500 calories a day, we finally founded success by taking away almost all foods! Weird, huh?)
However, we didn't live happily ever after... I wrote that diary from a hotel room where we moved for the weekend because we had a gash in our heater, dumping soot all over the house. One weekend turned into one month. I found it almost impossible to properly feed Kgirl2 at restaurants. She cannot eat fruit, most vegetables, grains, sugar, honey, nuts, hard cheeses, sugar substitutes, oatmeal, beans, brown rice and almost every single processed food because of the variety of additives it contains. Needless to say, many foods on that list made it back into her daily meals. After being without those foods for six weeks, allowing her system to heal a bit, reintroducing them was worse than ever. Her stomach hurt more than it ever had, her behavior was worse, she developed sores in her mouth and rashes on her bum -- and she lost almost all the weight she had gained.
We moved back into our house at the beginning of March and spent the next month repainting and recarpeting and generally living in chaos. Her diet improved, but we still ended up in far too many restaurants, eating far too many unapproved foods. By April, the contractors were all gone and the kitchen was mine again. I made a family favorite meal to celebrate -- and against my better judgement, I allowed Kgirl2 to have a little sauce for her meat. When I turned my head, she drenched her rice and beef.
The next morning she awoke with stomach pain bad enough to make her sob. She said that she didn't think she'd throw up, but promptly did just that. She had no fever, no other pain, just an unending stomach pain. And I do mean unending -- she still has it 24 hours a day. It gets worse when she eats the wrong thing, but it never goes away. Ever. She's had blood tests and ultrasounds and x-rays and stool tests. She does not have pancreatitis nor a SIBO (small intestine bacterial overgrowth). She just has pain.
So what does all this have to do with hunger? Despite all the changes we've made to her diet, she remains at 2% body fat. When she goes for a bike ride, within an hour she burns through the calories she has just consumed and she has no reserves. She is constantly, consistently hungry. She cannot eat most carbohydrates, so she quickly depletes her energy. She comes home frantic, angry, and sobbing, the same type of behavior she displays when she eats outside her diet plan. (About the only difference between moods swings caused by hunger versus inappropriate food is that bad food choices make her a little meaner and her voice becomes loud enough to guide a ship through fog.)
We haven't taken vacations recently because I can't figure out how to get her through an airport and long plane ride. When events run unexpectedly long, I have to choose between letting her be hungry or eating something she shouldn't have. We have get-togethers at our house because I can't explain to friends how to cook for her. On the few occasions where we do go to a party or something, I apologize in advance for the behavior they are about to witness in three, two, one -- implosion...
I never made a connection between her hunger and all the problems she was having thoughout her young life. I knew she was hungry; I knew she needed to eat every couple of hours or she'd fall apart. But I didn't know that she shook and she twirled and she bounced because she didn't eat enough. I didn't know that the reason I had to teach her how to dress herself every single morning was because her system was starving after being without food since dinner.
Her preschool teachers did not realize that the reason that some days she could answer questions without hesitation and other days she couldn't figure out how to count from one to ten was because on those days she was hungry. They suggested petite mal seizures, aspergers, anxiety disorder and "intellectual disability" (formerly called mental retardation.) Over the years, other teachers, counselors and a doctor or two have suggested those same disorders, then added central auditory processing disorder, bi-polar, obsessive compulsive disorder, tourettes, and executive order dysfunction. None of them saw a future without special ed; certainly none dared mention college...
Kgirl2 has none of those conditions -- she was just hungry. Once she began taking medication for the pancreatic insufficiency she remembered how to get dressed in the mornings, she no longer felt apart every couple of hours, she never shook or twirled or bounced. She learned to read. Her teachers felt that she no longer needed to be in special ed, she just needed services for reading and math.
Since starting the diet for FM, her anxieties have virtually disappeared (there are a few that remain...) Her voice is at a normal decibel level. Her behavior is dramatically better. She no longer needs services for reading (but continues to need services for math.) She is making friends and having conversations -- it turns out that she's kind of funny. Who knew?
We've had a bit of a setback as she started school this year because she won't eat lunch. Her stomach hurts too much and eating usually sends her running for the bathroom, so she'd rather not. She returns home shaky, emotional, and unable to concentrate.She finds it almost impossible to settle down enough to eat a snack and her behavior continues to deteriorate throughout the afternoon if I cannot persuade her to eat protein and fat. We saw the pediatrician on Friday and she feels that, in addition to everything else, Kgirl2 has hypoglycemia. We've come full circle -- we are back to needing her to eat every couple of hours.
I know that KosAbility is a place to get away from politics, so forgive me for reentering that world -- but knowing Kgirl2's history, I am both outraged and heartbroken over what is happening to our country. I think of her when I read that states are cutting back on school lunch programs and stopping the breakfast programs. Hungry kids struggle in school and I'm afraid we are dooming them to be a permanent underclass. I think of Kgirl2's story when I read about the teachers' struggles in WI. Hungry kids misbehave and we need experienced teachers who can deal with a class of unruly kids and we need them advocating for smaller class sizes. And I think of my grandfather who we feared had dementia, but regained all of his cognitive function when he began eating properly again -- I think of his situation when I read that meals-on-wheels programs are underfunded. Of all the things we do as a society, feeding our people has to rank among the top.