Today was an interesting day. I ran into a person who knew my sister. My sister’s name was Amy. She was three years younger than me, and for the first half of her life, healthier than me. But as this disease is different for everyone, things went awry. My health actually got better and Amy had a major turn for the worse. One bout of pneumonia turned into a seven year, downhill, progressive trend that resulted in a lost battle to CF when she was 18 years old. So yes, I was 21.
Today, here we are nearly 20 years later, I was at a work-related event, and I ran into a person who knew her. For privacy, I will only call him “Mr. Counselor.” When we were teenagers, a camp for CF patients was established. It was a first for CF’ers. A chance to play and interact with other CF’ers; a chance to meet “others just like me.” I attended camp for two or three years. It was so much fun! I made a lot of friends….friends who aren’t around anymore. But I digress…Amy attended a couple more years than me, as I moved on with college, etc.
This Mr. Counselor said he was a counselor at our camp (hence the name), and he spent “many, many, many hours with her.” I don’t know if that meant accumulated hours of aerosol treatments and respiratory therapy treatments….or if that meant these things as well as time, literally, counselling; listening to her speak about her frustrations of life and this disease. I didn’t ask. It didn’t feel right to ask… and in the long run, it doesn’t matter. I know that she made a friend who helped her. That’s what matters.
Now listen to this….Mr. Counselor is now in charge of a program that teaches respiratory therapy for those who want to be respiratory therapists as a career. And, he told me, it was because of Amy he became a therapist….because of Amy…he became a respiratory therapist. My sister made such an impact on someone’s life, it shaped his whole future.
I find this so overwhelmingly wonderful. Sad, and wonderful at the same time.
It’s been a long time since I talked to someone about Amy, ran into someone who knew her, or remember her…She lived sooo long ago, it almost doesn’t feel real. This makes me very sad. So sad to feel like someone I love so much doesn’t/didn’t feel real. But running into Mr. Counselor today reminds me that my memories are real. That Amy was real. That she made her mark on this earth. Growing up with her wasn’t just a dream.
This leaves me really missing my sister tonight, more than I have in a long, long time.
You all who read my blogs want to know how I am doing….my campaign coordinator, Bridget, tells me I should tell the truth. I hesitate… you all know me as a very strong, positive person; a person who is always on the go, not letting anything stand in my way, living the challenging schedule of the theatre life (and loving every second of it). But maybe Bridget is right… to put it bluntly, I feel like crap….that’s something I normally only admit to my husband, my mom and my doctor/nurses….. I think I am so afraid of “being weak”…but honestly…”being strong” all the time is becoming exhausting….I know I look great on the outside (so I am told)…I guess a more realistic statement would be, on the outside, I “look fine”…I am very fortunate this disease doesn’t show as much as a picture of the lungs would. And if you could see a picture of my lungs…
I will keep trecking forth. I will keep doing what I do…go, go go…but…I think it is starting to become (mentally) unhealthy to “be strong” all the time. I think it was easy to be strong for 40 years because I couldn’t feel the progression. But now, with all the changes my lungs have been going through since I started this campaign, I actually feel the changes now; I feel the progression. It’s quite uncomfortable physically and mentally. But….in the end..it is what it is…and right now, it’s getting exhausting. I will still keep with all that I love until I just literally can’t. Hopefully, that will be literally right up to the time when I need the transplant. I am told this is unrealistic, but hey, I’m not gonna let that get in the way…but….it’s not all gone be “rosey” getting there…when you all ask me, “How are you doing”…the answer from now on, just might be the truth.
And so, in the mean time…I am glad to know that Amy’s spirit is alive in other’s hearts who she touched. I love you, Amy.