Emily Ingram
This month's Heroes of Hope Emily Ingram, 16, of Texas is truly committed to being an agent of change in her community. She manages CF with grace and maturity far beyond her 16 years, in addition to adeptly juggling the demands of a challenging academic load, busy social life and full load of extracurricular activities.
Emily, how do you manage to stay balanced and on top of your medical routine with your busy schedule?
CF takes up a lot of my time and is a major challenge in my life – it's a tricky disease to live with. It can sometimes get in the way of being a normal teenager, but the key for me is to be organized and flexible and to have lots of support. I have a great group of friends, family and my faith that help me to overcome difficult obstacles. I also have to be able to make tough decisions that may not be the most fun to make but take into account my health. For example, when I go on all day trips with my school, band, or church, I always take my breathing treatment with me. I know that they are vital for my body to stay in the best shape possible, so I make compromises in order to stay healthy but also allow me to have fun and enjoy life. Also, I have given up multiple Christmas breaks, vacations, and social events because I go in the hospital twice a year. My preference would be to avoid the hospital completely, but I know that through IV antibiotics, my lungs can fight infection better.
I am also given great guidance by my parents. They let me choose what time of day to do my treatments, so I feel like I have freedom and choice, even though doing the treatments themselves are not negotiable.
What was an example of a tough time in your life and how did you deal with it?
Last year, I had a surgery to remove my upper right lung associated with my cystic fibrosis and was in the hospital for quite some time. It was a scary experience because it reminded me about how serious this disease really is. But in order to get me into a more positive frame of mind and keep me occupied, I had friends come visit me, played cards and read – all things that I enjoy. Getting back to normal activities, including my treatment routine and going to school, helped me feel more like myself, which prevented me from feeling sorry for myself and cheered me up.
What advice would you give other teens with CF?
I would tell them that they really have to be in charge of their own life. I know that I'm the only one that can better my health. My parents can't make me want to be healthy no matter how much they want to. I am going to need to do everything in my power to make sure that I stay as healthy as possible. For me, that means that I am taking my pills, doing my breathing treatments and doing everything that CF makes me do. It doesn't mean that I have to be happy that I have CF, but it does mean that I have to accept it and live my life to the fullest.
Also, I would tell other kids my age to never give up hope. There are so many other people around you that support you and love you, and it will encourage you. While it's easy to feel like you're the only person in the world who is going through tough times, there are other people who are going through the exact same thing or maybe even something worse. Never give up!
What are some of your proudest accomplishments that you achieved so far?
I'm a straight A student and in the top 5% of my class at my high school. I help out a great deal at my church and with the Cystic Fibrosis Foundation's Great Strides events. I'm also proud of my musical accomplishments; I've worked really hard and am now first chair in the concert band at school. For me, music is a way of expressing myself and letting go of everything else. Through my music I can be totally normal – Emily the musician, not Emily with cystic fibrosis.
What is the meaning behind the poem that you presented during a Cystic Fibrosis Foundation Great Strides fundraiser walk event?
My poem is about my life with CF and all the hardships that no one, except other people with CF, know that I go through. It can be frustrating with CF sometimes because on the outside I seem perfectly normal and people don't always know unless I tell them that I have to deal with a really tough disease. This poem is about what I go through and often feel like each day.
Do you know? (excerpt)
Do you know what it's like
To take 30 pills a day?
Do you know?
Or,
How about this.
Having food
Being pushed at you when you feel
As if your stuffed?
Do you know?
Have you
Ever gone in the hospital
When you feel fine, yet you know you're sick?
Do you know?
Have you felt it?
Do you know?
Probably not.
And I'm not complaining.
I know that's of no use
I'm just asking
Do you know?
Of course not.
You can't.
That's not your fault
Listen,
I don't know anything different.
And you know what,
That's ok.
God's given me
Cystic Fibrosis for a reason
I know this to be true.
He's made me strong,
Made me brave.
Please note: The information contained in these Heroes of Hope™ Living with CF award recipient biographies is not regularly updated. This Hero was interviewed November 1, 2009. This information is representative only of the moment in time in which the Hero was interviewed.10087103
