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.

Fundraising for Great Strides

It is almost that time of year again that CFers and those who love them all over the US start preparing and fundraising for The Great Strides. My family and I have been going for years, but the last few years have been lackluster at best. 2 years ago I was heavily pregnant and didn't make it through the whole 5K. The following year my sister was heavily pregnant and to be honest the whole thing snuck up on me and I am not sure I even raised any money. This year I am determined to make up for the last few years. Nobody is pregnant and I am already preparing so it won't sneak up on me again.

I have a little problem though. I love raising money that I know we need so badly for research and as we get closer and closer to more inhaled abx (inhaled levaquin, Amikacin and Vanco, anyone?) and to CFTR modulation therapy (Vertex, anyone?) and anti-inflammatory drugs (Alpha 1 Anti-Trypsin) I feel determined to make sure the money that is needed for these cutting edge drugs is available. However, I have never done any fundraising besides asking (begging?) family and friends for their money. And let's face it, I don't have any billionaire friends to support my cause so my fundraising is always modest at best. I would love to be one of those teams that raises obscene amount of money and give back to my CF community, but I honestly have no idea where to begin. I am not even sure how to go about asking companies or big corporations that have the money to give to little old me.

Anyone have success or advice? Any blog links of people who share their secret or the process? I would love all and any advice because I am willing to put in the work, but i have no idea where to begin.

Great Strides

Great Strides this year was amazing!! The weather was perfect! There was a good turn out and they had great give aways. I had such a good time and had several friends come out to join and support me during the walk. I feel healthier this year than any other year that I have been to Great Strides so it felt great being able to support the development of drugs that are improving my life! I still don't know if I will ever see a cure in my lifetime, but I am 100% convinced that CFers lives will continue to get easier as new drugs seem to be be popping up all the time. In the coming up years there are the VX drugs that may be put on the market, but I am equally excited about inhaled Cipro and other meds that will be so beneficial. I know Cipro works for me and I would love to be able to take an inhaled version. I do not know what the outcome of the VX trials will be for Delta F508, but there is always hope that good things will come of the trials or they will at least help us develop other drugs. I have to say it took me 27 years to truly feel hopeful about the future of CF. I am usually a skeptic when it comes to new developments, but I feel that CFers will be given more and more options of care which will increase our likelihood of longer healthier lives.