Despite a lot of volunteer and advocacy work with The Cystic Fibrosis Foundation when I was growing up (a privilege offered me by my amazingly insightful parents, and for which I am beyond grateful), I was not overly involved in what I have come to know and love as the Cystic Underground. For one thing, after all, there's only about 30,000 of us in the United States, and while two of these other 29,999 happened to live right next door to me growing up, I wasn't really on any missions to widen my CF circle in the way some CF kids of my generation did. I never attended CF camp, for example, nor did I seek out support groups or playdates even back when those were encouraged -- in the land before infection control. My parents had some friends with CF kids, and I met some through Great Strides or clinic or the hospital, but for the most part even up through college my contact with other CFers was limited to those I happened to run into either in the medical world or, occasionally, just through regular, everyday activities like, say, my church group in college.
Fast forward 25 years or so, however, and I realized that my CF was becoming more and more a part of my identity, rather than just a part of my lungs. For me, personally, this wasn't a bad realization -- it was simply an acknowledgement that my disease was looming somewhat larger in my life as an adult, and therefore required more of my day-to-day attention. As I entered the high-powered workforce, for example, I learned to reach out for advice from other CF folks who had been there, done that, and were in the midst of successful and fulfilling careers. As I moved out by myself in New York City, I sought support from fellow travelers who also had no one to bang on their backs or call the doc for them anytime they got sick, and I realized that CF adults can live safely and happily on our own. And as I faced the reality of lung transplant and struggled with how to react to my changing health status, I looked to my new friends in the CF community for guidance, support, stories, and survival tips. I don't think I'm exaggerating one bit when I say that you all helped see me through every step of the way, and continue to do so today.
All of which is just a small part of why today's Community Faces guest blog, from the founder of one of my favorite CF community hang outs, is super special. Huge thanks to Amanda for taking the time to write her story of faith, friendship, and so much more in the face of our shared little monster. I'm thankful for your friendship, your advice through the years, and that small little place you created "out of boredom" that has grown to have such a special place in all our hearts.
Community Faces: Sounds from Underground
Name: Amanda Berrie
Relationship to CF: CF Patient -- DF508, R1162x
Facts about Amanda:
I like painting, drawing and taking pictures.
I love my dachshund babies.
I can take or leave long walks on the beach, but the beach is fun.
Let's go fishing!
I don't really know how to write my story, so here we go. I was born seemingly healthy, happy and normal. However I just wasn't growing like I should. A few doctors even started to accuse my mother of not taking good care of me. One day my mom saw a talk show, at a time she normally didn't watch tv, and they were talking about cystic fibrosis. A light went off in her head: "that's it!". Finally a doctor listened and at 16 months I was diagnosed with cystic fibrosis. And so the adventure began.
My parents, mom especially, instilled in me that although I have cf I am no different. My mother encouraged me in anything I wanted to do. Whether it was playing with animals or being artsy, she always said "you can do it!", or "how can I help?". She never let me use CF as an excuse, nor did she herself try to use it to stop me. I am forever grateful for that.
I'm a country girl, I grew up getting down and dirty and I still do to this day. But I clean up real nice! :)
I am married to my best friend. He is my leader, counselor, love, nurse, and protector. God placed him in my life at the right time, and he saved me from the ugliness. Although I had wonderful encouragement at home, at one point I let the ugliness of CF consume me. That is the simplest way I know how to put it. Ugliness. Darkness. The Pit. All consuming black hole. I finally gave in and asked God to help me out of it, I couldn't do it alone or by myself. Yes I had my family, but something was just missing. This meant allowing God to help me and guide, the other part was having some one else along the way. Enter my husband. Right time, right place. Can you believe this guy even research cystic fibrosis on his own, and still wanted to date me!?!? With God, he pulled me out of that pit. While there is still ugliness, I now look for beauty and I see beauty everywhere.
Through many hospital stays, PICC lines, ports, surgeries, home IVs, daily meds, treatments, bad days, good days and all the quirks that come with cf; I learned quickly to enjoy the simple things in life. The small things can be great and are what makes life so wonderful. I was recently asked what is on my bucket list. I couldn't answer. I enjoy everything as it comes. My advice would be; don't be to busy trying to check things off a list and miss something that is right in front of you.
If you can't tell, I do have a strong faith in God. ;) Above everything else, God guides me and leads me along this path, my foundation. God is with me through everything. This life is greater than myself, and if along the way I get to share my faith with someone else, that to me, is worth it. If happiness, encouragement, God's love and hope is shared...worth it.
Almost 11 years ago I felt the need to reach out to the cf community. I needed to talk to other cfers and at the same time I wanted to create a place for people to gather and get support, and build friendships. So became a group called cf2chat created out of sheer boredom not thinking anyone would find it and if they did it wouldn't be many. To my surprise, it grew and grew quickly. There have been many members come and go through out the years. Many life-long friendships made in the group for many. There has also been great heart ache as members pass away. Some times the pain is so great I would rather throw in the towel and hide away from the CF community all together. That can not be done. This group means so much to every one there. This group has been something greatly needed for some. People, whether they have CF or are a loved one, need this group and others like it. The bonds that are made in groups like this are unique. You connect with people who share in an experience exactly the same as yours, or at least similar enough you commiserate. You know what each other is feeling without having to express it. It is almost indescribable the support a person can receive, even if it is just a simple "We are sending you hugs."
Since being involved in the CF community I have learned we are a unique bunch of mutants. Strong, confident, appreciative, beautiful, and supportive. Even if one doesn't feel that way, they really are. I feel honored to be part of it all. That may sound cheesy, but I like cheesy sometimes, and cheese....so cheese is good :)
To visit Amanda and more of the CF community online, please check out CF2Chat, a great support community for folks with CF and all those affected by this disease.