Cystic Fibrosis: Death and Dying

First, to my friends and family who may be reading this, please do not worry! I've definitely been sicker for the past two years, and for the first time in my life it really feels like I have cystic fibrosis, but that is all that is going on. I have CF. It's okay. Don't panic. I love you. 
And if you are ever worried or curious, know that you are welcome to ask questions any time. It's not a big secret or a tender wound to be avoided. It's my life, and I'm so happy that you care to be a part of it. 

 

My early struggles with mortality...

When I was in high school, the reality of my life potentially being half over hit me hard. I remember feeling so angry and hopeless. Frankly I was pissed that my life could be half over and I still had to go to high school. What a waste of time! Right? I understand the fear and frustration that comes with having a shorter life expectancy. I remember literally wanting to wear a paper bag over my face 24/7, avoiding talking to almost everyone at school, and trying so hard to be the nicest person I could be when I did have to interact with others. I didn't want to leave behind any pain when I died. 

I closed off my feelings to just about everyone. Always an overachiever, I focused on grades and made big (well, big to me) plans for the future that I was certain I couldn't actually have. I talked about retirement accounts with my unofficial-foster-mom and listened to lectures from conservative family members about waiting until I was 34 to have kids ("as if I'd be thinking about having a child from my deathbed" I remember mocking them in my head). I watched someone very dear to me replace me with some other cheerful, rosy-cheeked girl (who wasn't sick, of course) after I finally opened up about my fear of death...

I know what it feels like to hurt so deeply and to be so afraid of hurting anyone you might not have time to apologize to or to be so angry and not feel like you have the right to express it. I know what it feels like to be tossed aside for a "better model" after revealing the terrible truth. I know how much it hurts to have someone respond to your pain and fear with their own stupid fear-reactions. I know what I'm about to ask you to do is terrifying; I know how badly it can hurt when the conversation doesn't result in instant love and comfort. Knowing that, I'm still going to ask you to take the risk. Just hear me out. 

Living with an Expiration Date

I carried a lot of guilt around when it came to living life. I felt guilty for taking on student loan debt to earn my degree, especially this year as my body's needs have increased and I've had to face the reality of not being able to work a "real" job. I struggled to maintain jobs from home for months, but even that got to be too much. It was a constant choice between preserving my health as it is, or making a little money to contribute to my family's needs. So what was even the point of earning my degree if I could never use it? And how could I choose between helping to pay my own bills, or caring for my body in the hopes of preserving it for a few extra years... therefore increasing the length of time I might have to depend on others to help pay my bills? It's tricky territory, and I have always been quick to hop on the Guilt Train.

I carried a tremendous amount of guilt coming into this wonderful marriage with the most incredible man I've ever met. We actually started dating when we were 14, and I was 15 when the big panic about my lifespan hit me, so this guilt has really been a major part of my experience in our relationship. How could I go into a lifelong commitment knowing I would most likely leave my love very early in life? How could I hope to be a mother knowing I might leave this world and my children before they are even grown? How could I take time for myself when my husband, my parents, my siblings, aunts, uncles, grandparents, cousins, and closest friends only had so much time with me? Now, I know that might sound a little conceited, but I am saying it out of empathy, not pride. I'm blessed to be surrounded by loving friends and family who are constantly expressing their love and gratitude for having me in their lives, so knowing that I am loved and I am so important to so many people, I felt even more guilty that I probably wouldn't be able to survive more than half of any of their lives; even my parents are all likely to outlive me by several decades. 

For seven years, I was in an all-out war with myself. Toward the end, the war wasn't just ethical, ideological, or emotional, it got physical. My stubborn determination caused more damage to my mind body than if I'd listened to my body and to my doctors in the first place. My ego was thoroughly mangled after the years of guilt and self-sabotage... 

But now the war is finally over. It hurt for a long time, coming to terms with everything. It was like a bad burn, every little brush, even against the softest thoughts and fluffiest ideas about the future, was enough to bring me to the ground in tears. Now the pain is different. I feel separate from my pain. It is still here, but it's like a baby I need to tend to. Some days it is fussy and needs a lot of attention. I tell it, "I am here, I see you. Everything is okay." Some mornings during my yoga practice, especially after a particularly peaceful breakfast with my husband, the grief rubs up against my ankles like a cat. It's a sort of dance we've developed: the pain tries to trip me or throw off my balance, but I give it a loving pat and go back to my practice. The key to this freedom and sense of peace all came down to recognizing the pain and having the courage to face it every single day. The pain isn't there to destroy you, it's just there. You can go to war with it, or you can embrace it and learn to create a full and beautiful life that cannot be unhinged by a pain-cat rubbing against your ankles. 

My message to you...

To my fellow CFers, I want you to know you are not alone. I want you to know that it is okay to accept and receive love from those who wish to give it to you. I want you to know that you are not betraying anyone by being sick. I want you to know it's okay to be afraid, angry, and devastated. What helped me the most was finally allowing myself to grieve for the years I was so afraid I wouldn't have. The truth is that CF care is improving so rapidly and the doctors tell us we are so close to a cure. We don't know what tomorrow holds. The average life expectancy for someone with CF in 2006 was about 37 years,if I remember right. But that has grown so much- 20 years or more since 1980. Now it is nearly 2018, nothing is certain except that death will eventually call everyone home. This uncertainty brought me anxiety on top of my guilt, which pulled me into depression. (Yeah, try to figure that mess out.) It would still eat at me today if I hadn't finally faced that my fears were valid and needed to be recognized. 

So I am going to ask you to do the bravest and most important thing you may ever do in your life: look your fears in the eye. Grieve for the years you are afraid you will lose. Grieve for them now so that you don't waste the rest of your precious time in this world fearing that you will lose them, or wondering if a cure is going to save you in time. Grieve for the time you've spent on emotional lock down, carrying mountains of grief and pain on your back. You can't get that time back, so recognize the loss and allow yourself to move forward from it. Be brave and allow yourself to feel. You cannot feel all of the good without also feeling all of the bad; to shut down one part of your feelings prevents the others from flowing freely as well. There's no other way to be free. Grief isn't a one-and-done kind of thing, so allow yourself to grieve as much as you need to for as long as you need to. Take care of your body, reach out to a loved one, and let your grief spill out. It's a lot at first, like a tsunami of grief, because you've been holding back for so long, but I promise the flow eventually slows to a gentle stream. Ask for help before you start, and ask again as often as you need throughout your journey. 

Personal philosophy and final thoughts

Once I grieved for those years I was so afraid of not having, I realized the greatest gift I can give anyone who loves me is myself. In saying that, I don't mean that I am not my own person. I mean that when I am with my loved ones, I am with them 100%. I share my feelings, my thoughts, my joy and my pain, I reach out and offer my support and empathy. The gift is my time, which is precious on it's own, wrapped up in my attention, which should never be wasted on worries and fears. Instead of creating a prison in your mind, let it all out. Set yourself free. Give yourself permission to feel the painful feelings, and give your loved ones the gift of  supporting you through your pain. Love is about the good times and the bad, how we can help each other grow as well as helping each other to heal. True love is never without some measure of suffering, but it is absolutely always worth it. 

Grief makes people feel uncomfortable because they want to help; they wish more than anything in the world that they could make it all better. So if you don't want to hurt your loved ones, if you are keeping your pain locked up to protect them, you've got to understand that by opening up to them, by allowing them to see and comfort you in your pain, you are allowing them to help. They can't make all the pain go away, but your life and theirs will be more whole and filled with love and peace when you allow the pain to show. 

I hope that you have the strength and courage to face your feelings about death, and if you've made mistakes out of fear, I hope you have the humility to ask for forgiveness. I know if you explain yourself, they will forgive you. If they can't understand it, I know that others will. Don't stop reaching out. 

I know this journey is different for everyone. I know that how I cope with death and dying, with having CF, with uncertainty and pain, and especially with guilt may be very different from how others do... but I believe with all of my being that you cannot be free from the fear of death until you face it, and nobody should have to face it alone. 

Just for today... 

Today I am comfortable with the idea of death, truly. I am not indifferent; it makes me sad to think about leaving the beautiful world I am so blessed to live in. It makes me sad to think my family will have many Christmases without me and that there will be a day every year for the rest of their lives that they remember and miss my presence in their lives. It makes me sad that my husband will probably have to make many of his own breakfasts and eat alone and with the pain of losing me weighing on his heart... But I have found peace in knowing that I am living my life fully every single day.

I am so grateful for this body I've been given; I try to look at its shortcomings with love, like I would a child or a puppy trying to learn something new. This body may not be perfect, but it lives for me every single day. I can do the things I love to do, and when I lose the ability to do something I love, I am still grateful for my mind. I am grateful for the passions that drive me and the curiosity that keeps me glowing. I take time to be with myself every day, to love and value myself as I am. And then I take that peace and share it with my loved ones. I call my grandpa often; when the sun doesn't shine and depression comes knocking I call to send my love and support (and an invitation to come visit my cheerful little puppies), and when it's bright and beautiful for days on end, I call to hear him chatter. When my husband is stressed, I focus on being a calming presence. I take care of all that I can to make the day easier for him and I am careful to always let him know that I am really here. When he's elated, I'm here still, cheering him on and sharing in his joy. Whether I am hurting or happy, I reach out to my mom to let her know I love her and to share parts of my days that I know will be meaningful to her. I text my sisters to tell them that I love them, to hear they boy-drama and to ask for advice about nail polish colors. I remind my friend that she is inspiring af and I am so proud to know such an incredible woman. I remind my other friend that she is absolutely brilliant and thank her for the difference she is already making in the world. 

I still have goals. I still have a mission. Just because I could possibly maybe kind of be dying currently or within the next five, ten years, doesn't mean I've given up. If anything, it means I'm living deeper. I spend my days looking for the balance between comfort and challenge in life. I study yoga and meditation, I practice baking and minimizing our impact on the planet, I play with my dogs and do my best to train them well. My husband and I work to set goals together and take steps to meet our goals. I look at the big picture, and then I break it down. Lately, I journal every day. I've been practicing "just for today" statements to remind myself to be fully present in this day that I have right now, that I am so grateful to be living. I highly recommend this practice. Here's one to get you started: 

Just for today, I can laugh and breathe and play. 

 

I hope that this has helped you in your journey. I know that you are strong and brave and kind already, or you would not have read this entire post. You have shared in my journey and cared enough to read these words; now show yourself that same kindness. You are worthy of love. You are worthy of knowledge and healing and family and friendship. You are not a lost cause or a traitor or a ticking time-bomb. You are a precious, unique, absolutely incredible human being, and you have as much right to live a full and carefree life as anyone. Please be gentle with yourself and treat your body with kindness today. I hope you find your freedom. 

Finally, to family and friends of people with cystic fibrosis, I hope you can be strong enough to love your CFer deeply, without holding anything back to protect yourself from the potential loss. I know in my own journey, when I finally looked past the guilt and fear, all I really wanted was to be loved as openly and genuinely as anyone possibly could. I am so blessed to have family and friends who are brave enough to open their hearts to me despite their own discomfort and fears when it comes to death. 

Thank you. 

 

P.S. Want some more in-depth help? Check out my CF YouTube Channel SisterCyster for advice, important conversations, and inspiration. 

Visit the CF Services page for information about my Cystic Fibrosis Thrive Coaching! 

 

 

Photo by ORNELLA BINNI on Unsplash