Last week, a friend who had cancer said that there was life before cancer and life after. I had to agree. With any serious or chronic illness, it seems like there’s a dividing line, splitting life into two completely different segments. And, they’re both dramatically different from each other.
I’m blessed. I have a chronic illness, asthma, but I’ve had it since birth so my entire life has been about managing my invisible illness. I never experienced good health although as they’ve made advancements in medicine, I’ve become healthier over time. I never had a before and after. My life’s always been about controlling my disease. There is no dividing line. However, my teenager’s had to experience division in a profound way.
Two years ago, she was a competitive dancer, on her middle school dance team and while she had migraines, she was still able to do all the things that teenage girls do. She had sleepovers, trips to the mall and went to parties. She missed school when she had migraines, but she was able to stay caught up, get good grades and be a normal kid. While we did have to make some adjustments to our routine in case of illness, they were minor distractions like packing medicine or having my phone nearby in case I needed to pick her up. Nothing big.
December 2014 is our dividing line.
I say “our” because having a chronically ill child is a family affair. While Rosie experiences the misery of chronic illness first-hand and is impacted the most, all of our lives changed when she started spitting up blood. We’ve all had to make adjustments to our lives and some days it’s hard to remember what life was like before it was split in two.
At first, it was just inconvenienced and interrupted. Searching for a diagnosis, Rosie was still dancing and attending school part-time. She was with her friends at the studio as much as she could, went to school a few days a week and she had a good summer. Unfortunately, the story of her health has been like Lemony Snicket- a series of unfortunate events. Every time she’d start to feel well, she’d have a set back and in September, the dividing line for her was drawn a little deeper in the sand. She was homebound for school and had to stop dancing due to extremely high blood pressure and a concussion. For a social teen who had been dancing for 12 years it was a devastating blow. Her life no longer resembled the life she had before she got seriously ill. The division was real.
When you’re a chronically ill teenager, there is also a dividing line between you and your peers.
A lot of the things that teens take for granted like going to school or running down the street to see a friend spontaneously, can’t happen when you’re sick. Friends don’t understand when plans have to change and honestly, some teens just don’t have an ounce of compassion for a friend that’s ill. They don’t even try to understand. When you disappear from school and dance, you fall off their radar. So being sick stinks twice- you can’t do the things you want to do and because of that, you feel left out.
On the other side of the line, we never had to put together a plan to get out of bed or set aside 90 minutes to get ready for school. We didn’t live a life with a big bag of medicine, fighting with insurance companies and school. We never appreciated a wheelchair or talked about a handicapped hang tag for the car. We never had to deal with the “you don’t look sick” remarks or doctors not believing that symptoms are real. We didn’t have to plan everything and we didn’t have to cancel all the time. We never had to apologize for things that we shouldn’t have to apologize for.
While our life has been completely divided by chronic illness, not all of it is bad. You get to see what your kid (and you) are really made of: how tough you really are. You learn to appreciate the little things in life, instead of taking them for granted. You see clearly who your friends are and are able to walk away from those that aren’t worth your time. I’ve had a chance the past year to get to know my daughter in a way that I never would have if she wasn’t sick and while I wouldn’t wish illness on her, I feel blessed that I’ve been able to see parts of her that I didn’t know were there. Still, I look forward to crossing back over to the other side of the line.
Here’s the thing about chronic illness; it doesn’t go away. The other side of the line? I’d be happy to be back where we were a couple of years ago and I know my teen would too. We believe we can get there, we just have to figure out how.