Learning How to Cope
Uncommon Lungs: Beyond the Episode
Carissa is an inspired artist and devoted caregiver to her daughter with cystic fibrosis (CF). She opens her heart, sharing the raw and tender moments of her journey. Carissa weaves together her struggles and triumphs, using art as a healing outlet, while embracing mindfulness and resilience.
Remember, everyone’s experience with CF is different. It’s important to work with your care team to navigate your specific needs throughout different stages of your life.
How has your experience as a caregiver influenced how you navigate your daily life?
It’s weird. I don’t want to assume that all people are obsessed with their kids, but I love M* in this way that I couldn’t have imagined. When she was born, my understanding of the emotional spectrum expanded in ways I never anticipated. I can remember life before her, but now she is a part of me, and I am forever hers.
Before M,* my life was really unstructured. It was a luxury that I never really understood having. But now our lives are dictated by the additional needs of her CF. On the good days, I would say it helped us because it demanded the time and space to develop health routines, on the bad days I just feel trapped. Either way, my love for her, rational or not, makes me believe it is so worth every moment.
Have your views on CF changed since your daughter's diagnosis and how do you stay grounded through these shifts?
My expectations are changing all the time. I actually cannot even say what they are. I try not to think about it because I find it so uncertain. This sounds so cheesy, but I do a gratitude practice every day for her health and my health. And everyone I love’s health and for all living organisms. We all need the help right now.
“When [my daughter] was born, my understanding of the emotional spectrum expanded in ways I never anticipated. I can remember life before her, but now she is a part of me, and I am forever hers.”
– Carissa, parent of a child living with CF
Have you ever made a difficult decision that challenged your sense of self and how did you manage those feelings?
Oh god. All the time. It is always this thing of trying to live life with risk. A balancing act. And I am still learning every day. I make lots of mistakes. It helps me to accept the randomness of life and to try to be thankful for what I have.
In your experience, how have hard times led to meaningful, supportive relationships?
Oh gosh. So we just got out of a hospital stay abroad for distal intestinal obstruction syndrome (DIOS) in rural Germany. When we went on the trip, my relationship with my partner was strained. We had both been kind of like ships in the night with caring for the house and M*. We were both hoping that the trip would be a reset of sorts. When M* got sick, the first thing I felt was anger since my biggest fear about going on the trip was that we would have something medical happen. My anger was acutely directed at my partner. This was the second time something that we decided to do resulted in a hospital stay.
However, I kept thinking in the hospital, “what is it that makes people become stronger in their relationships during hard things?” It seems to me that hard things just put strain on us. They don’t always make us stronger. When we were en route to the hospital, my mother-in-law sent me a text about how she hoped this would make us stronger. I was miffed. But I think she might have been right. It was a reminder of how much we need each other, and about how we work well during hard times. And that M* needs us.
We cannot survive without the people who we love, and without the people who love us. I am trying to embrace the difficult relationships that somehow make life interesting.
Are there any coping mechanisms you rely on when times are tough?
Venting to my sister! I stretch, I make lists of things I am thankful for, I sit in the sun. I am very basic. Feeling connected and not alone does wonders for me. I also draw and write. Both the writing and the sharing are both so helpful in pulling one out of a downward spiral.
“My failsafe is the faith that we did the best we could with the information we had at the time.”
– Carissa, parent of a child living with CF
How has sharing your art and writing publicly transformed your view of your story?
It actually makes me think that we are all not so different and alone as we assume we are. There is all this fear around sharing things that might be on the edge of the label “bad”, but actually I have had tremendous support from strangers. For me, I channel negative thoughts into this form of creative energy that helps me cope with existence.
How has the CF community inspired you and your art?
There are these things in life that seem to bond you to other people without any interaction. Like being from the same hometown, or having the same last name, or having the same genetic condition. Becoming a caregiver of someone with CF got me into this club where total strangers offer support and care. There is this assumption that our lives are parallel, our hardships and wins, and that we are all trying our best.
Are there any universal truths you have noticed that you wish everybody knew?
Sanity is a tightrope and I am just grateful to be here.
*Abbreviation “M” used to ensure privacy of Carissa’s daughter
Make sure to listen to the full conversation between Katie and Uncommon Lungs podcast host, Julia Rae
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