THE “D” WORD
WHAT MUST IT BE LIKE?
"What must it be like," my daughter asked recently, "to have a normal body?"
She asked without anger or regret, just in contemplation. I was startled by the thought. "What must it be like?" And I realized, I never thought in terms of not normal.
Well, yeah, having to know where every bathroom in the city is located, having your child not eat half the time, seeing doctors and being in and out of hospitals, falling off the growth chart, hearing a tummy rumble from across the room, I guess these aren't exactly "normal." But, it was normal for us during her growing up years.
A few years ago I wrote the following in a letter about my daughter:
“She’s doing very well after her operation and seems to be back to normal. In fact, she’s better than normal. I think in the last year we forgot what normal was because she was so sick all the time.”
But now I am questioning what I meant then by, “back to normal?” Didn’t I mean, “normal for us,” “normal considering that she has Crohn’s,” “normal for someone living with a capricious, nasty disease who has to ask, ‘What must it be like…"
Well, you get the picture. I definitely have a skewed view of what is normal. So, I contemplate, “What must it be like…” to grow up with Crohn’s?
I’ve already mentioned bathrooms, doctors and hospitals. Notice they are all in the plural. Those are pretty awful to have to deal with while growing up. But sometimes, it’s the things that aren’t recorded on the doctors’ charts that are worse.
We probably all remember a time when we were children when we were not believed. Try being discounted for years when you tell your parents you have a tummy ache and they say to you, “What did you eat?” Teachers asking if you are not just making up stomach aches to miss school. And even the doctor tells your mom you are perfectly fine when, in fact, you are not.
It’s difficult to keep up with normal activities like school. Trying to be “normal” is like running the racetrack always in the outside lane. It takes extra effort just to finish the course.
Often, your friends don’t understand. I though it was amusing when my daughter’s seventh grade friends wrote to her while she was hospitalized.
“You are so lucky to be in the hospital,” they wrote to their 12 year old friend, “because you don’t have to be here in school.” I guess you could say they missed the point, or is middle school really that awful?
Then there is living with short. Not just too short for the basketball team, but so short that students stop you when you have moved up to high school and ask you if you are lost, then point out the way to the elementary school. And those are the ones being nice.
Mall hopping with your friends is pretty embarrassing when they have moved on to teen sizes and you’re still wearing children’s.
How about medicines that make PMS look like the good times. And try being skinny, then fat or whatever tricks your body and your medicines has in store for you. All of this in the years when you are supposed to be developing self-esteem.
So you see I have quite forgotten “normal” and settled for IBD. I think that feeling “normal” about whatever we live with is a way of coping with the not so “normal.” (I put “normal” in quotes because really, there is no such thing.)
You get used to things you may have to accept in life and it becomes part of your everyday. Acceptance is good. On the other hand the saying goes, “Do whatsoever you can, then accept.” So, it is also important to remember the “doing.”
For instance, when a child falls off a growth chart, the doctor and parent shouldn’t just assume that must be her genetic make up. More information about IBD has to be made public knowledge so that pediatricians will be more aware and diagnose the illness sooner.
This is something we can do.
And then there is a quality of life issue that is very important. In our case, we had accepted that my daughter missed school a lot (about 1/3 of her freshman year in high school.) Luckily, we had a doctor who believed that was unacceptable. In this case, a bowl resection changed her life for the better.
Quality of life should definitely be a consideration in your health care. If the medicine makes you crazy or just makes your life miserable, talk to your doctor. There may be alternatives.
Make yourself an active partner in your child’s or your health. Teach your child this very important skill by listening to your child, explaining what is happening and how s/he can help.
Also, support the researchers trying to find better ways to deal with IBD. Believe totally, “it doesn’t always have to be like this,” because that is the attitude that will bring about change.
Then, after the “doing,” there is that difficult “acceptance” part again. I practice counting my “yes’s” instead of the “no’s” life has given me. It helps balance life.
For instance, my daughter was touched that her friends took the time to write her in the hospital. It didn’t matter that they didn’t really express much understanding for the situation. The important part was that they thought about her. She saved those notes.
My mother holds the philosophy that what doesn’t kill you makes you stronger. I’ve always considered that a bittersweet philosophy. But I see that my daughter has a wisdom and inner-strength and understanding that many her age will take years to realize.
The friends she has have been tested and found true. She’s taken the time to find a direction in life and concentrate on that path. She’s learned to set reasonable limits considering her health and yet not limit her potential in life.
I’ve met many young people struggling with IBD. I have to say how much I admire their strength and perseverance. I appreciate how they go the extra yards.
So even though I act as if Crohn’s is normal, and in our lives it is, I know what a struggle it is to be growing up with IBD. To my daughter and to the young people with IBD, I send special hugs. Please accept them.
Copyright 1996 - 2002 Arlyn Serber