Shame

This past May I attended our annual Great Strides event. It was the best event we have had to date, but something happened while I was there that I haven't really spoken about to anyone outside of my husband. It was one of those experiences that seems to shake you to the core and as much as you try to brush it off, you just can't fully let it go.

After the walk there was a carnival area set up for kids to play games while they waited for the lunch to arrive for all the walkers. I wandered over with Kaylee to one of the carnival games, the kind with the big wheel that spins until it lands on a prize which is one of my daughter's favorite games, and waited in line. While waiting a young girl around my own daughter's age, maybe 3 or 4, wearing a purple "fighter" shirt, which told me she too had Cystic Fibrosis, wandered through our line to get to another activity. She was young, distracted by all the excitement and was walking with her neck craned to the side watching kids across the grass cheering at their victory.

Suddenly, I was startled by a woman sharp voice screaming someone's name. The voice was urgent, panicked, and much louder than seemed necessary given the small area we were in. My eyes darted around looking for who could possibly be in danger. Everyone seemed safe and everyone my eyes met seemed to be having fun. I could not figure out what was causing this woman to panic. I looked back at the woman to see where her eyes were staring only to realize the panic, the shouting, the big scene was directed towards the little girl only now becoming aware of her mothers shrieks. As I looked back at the mother I saw her pointing a finger shouting, "SEE!?? LOOK!?! DO YOU SEE THAT LADY?? DO YOU SEE HER SHIRT?? GET AWAY FROM HER NOW!!!"

My heart caught in my throat as I realized the accusing finger was pointing at..me! She was screaming and shrieking and in a complete panic because of me?? I was the danger that this women felt was worth creating such a big scene that people stopped what they were doing to see what had happened? She quickly grabbed her daughter and loudly scolded her, "Do you see that lady's shirt? You need to stay away from people wearing those shirts! It isn't safe to be near people like her!"

I wasn't safe to be around? My eyes immediately went to my own daughter. How would she feel hearing someone scream that a young girl her own age would not be safe near her mother? Relief filled my entire body to realize my daughter was busy looking at a woman who was making balloon animals and had somehow missed the scene. Once I knew my daughter was unscathed from this woman's fit over my proximity to her daughter, I suddenly felt shame fill my body. I had no real reason to feel shame, I had done nothing wrong except to be born with a genetic defect (which meant my lungs may harbor bacteria that her daughter could catch and get sick from), the same as this woman's daughter and yet her screaming and deeming me unsafe around her child made me feel as if I were a monster.  I wasn't coughing and in fact, having seen her sweet girl I had turned slightly away from her as a way to subtly protect both of us. Somehow the interaction brought back all the feeling of shame I carried as a newly diagnosed teenager for having this broken body and being so very different from everyone else. I knew in my mind I should not take this women's overreaction and her accusing words personally and yet I have never had a complete stranger publicly point me out of a crowd and shout that I was unsafe around a child! Those are not words that are easily forgotten.

I also felt heartbroken for the small child who is still completely naïve to the idea of bacteria and cross infection. She was taught to be afraid of people just like her and in such a irrational way that I wondered how that effected the way she felt about her own disease. Rather than feel inspiration or understanding in people just like her, she was told she have a deep sense of fear and doom in our presence.

Finally, I felt sadness for the mother, so consumed by fear that she had to not only make her daughter feel bad, but to shame a person who knew exactly what her daughter dealt with every single day. As a mother, I understood the need to keep your child safe, but it was clear her fear of cross infection was beyond rational. We were outside, neither of us was coughing, neither of us was even talking, I was turned slightly away, and we were several feet from one another. I hate that any mother feels that much fear for their child's wellbeing, rational or not.

It was all a reminder how isolating this disease is and that even at an event meant to support, encourage, and build up those that suffer from CF we are still so very alone because we don't have the freedom to sit down with a child and commiserate with how boring treatments are, or hug a person with an accessed port and say, "I get it," or pat the back of someone doing the walk with an oxygen tank and tell them that they inspire us. That in a group of people that desperately care about the CF community we can be made to feel like a monster for simply existing.

Accountability

Most mornings I start my day at 5:20am. I crawl out of bed, pull on a bathing suit, puff my bronchodilator, grab a glass of milk and drive to the gym. I come home, showered, dressed, and having my workout done to a sleeping household. I quickly start my treatments so I don't waste any precious time before my daughter wakes up. She comes wandering into the living room sometime around 7-7:30am. By this point, I am sipping my morning coffee and somewhat impatiently waiting for her to wake up. My favorite part of this routine is that when Kaylee wakes up I am all hers. I can make her a healthy breakfast and sit and chat about our plans for the day. She gets a mommy that is totally present.

While I was feverish and sick I took a week off from the gym. My body was exhausted and I was able to sleep an extra 2 hours everyday which I felt I desperately needed. However, this meant she wandered into my room to wake me up when she was ready to start her day. I was groggy and tired and had no desire to get out of bed while she was bouncing with morning energy that only small children seem to possess. I threw fruit at her and snapped on the TV so I could start my 45 minutes of treatments. I was interrupted because she was still hungry, needed water, was bored watching TV, etc. She would try to tell me something, but I would be coughing so violently I couldn't respond which left her repeating herself over and over. In turn, it made me frustrated that she kept repeating things while I was coughing so hard I couldn't breathe and she got frustrated that I wasn't responding. My 45 minute treatments turned into an hour because of all the times I had to stop. By 8:30 I still wasn't showered, neither of us had breakfast and we were both a little grouchy. One morning after I strapped on my vest to start my treatments Kaylee asked me teary eyed, "Mommy, when are you going to do shaky (vest) in the middle of the night again? I like when you do that better."

Those two sentences were all the motivation and reassurance that I needed to know that my workout routine was something I needed to keep up for a very long time. It is better for my health and my lungs. It is better for me because I can do my treatments uninterrupted and in peace (the way I like it), and just in case that wasn't enough motivation, it made may daughter's morning experience so much better. Trying to fit in treatments and an exercise routine while parenting young children can be a challenge at best, but this time having a small child request that I workout again with tears in her eyes (although for selfish reasons on her part) was the very best motivation I could have asked for.