On Finding My Way Back

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We are here to awaken from our illusion of separateness. – Thich Naht Hanh

For a long time my life looked just like my friends’. I graduated high school and went to college where I did college things like go to parties and join a sorority. After college I got a job, moved into my own apartment, and started my adult life. I bought a house. I got married. All things my friends were doing, too.

Suddenly I feel different. People are having babies. Advancing their careers. Planning their futures.

All things I’m not sure I’ll ever get to do.

I don’t know if it was turning 30 – spending so much time thinking about that milestone and what it means. If it was spending weeks planning #for30more – being consumed by all things cystic fibrosis. Or if it was some combination of the two. Or neither. But I’ve been struggling.

Struggling not to suffocate from the unending sadness.

Struggling to feel joy for friends and their milestones – occasions I would normally love celebrating.

Struggling to participate in normal, everyday conversations; letting them get drowned out by a constant internal conversation, one full of questions with no answers; of “yes, but”s; of my biggest fears.

Struggling to relate to almost everyone. And it’s been so very lonely.

Because of this I’ve been pulling away; hiding again; finding comfort in the isolation – a place that’s lonely and sad, yes, but is also a place where I don’t feel like an outsider. I don’t have to fake it or pretend everything is okay; instead I can cry and get angry and welcome the pain in. I can try to get comfortable with these things rather than push them away.

And I hope that by giving myself the time and space to explore the pain and sadness that comes with having a terminal illness, I’ll find my way back. Back to those conversations, back to my friends. Back to myself.


12 thoughts on “On Finding My Way Back

  1. As a fellow CFer, I can totally relate to this. Especially when I see all of the pregnancy announcements on Facebook, which seem to be more and more frequent, and not to mention being surrounded by friends who are either pregnant or already have children. That’s when I feel most like an outsider. It’s hard not knowing what the future holds and no one seems to understand our fears and our heartbreak. There is always a void. I hope that you find peace and know that you are NOT alone. Much love!

  2. Take the time you need. Winter is a time to turn inward, to rest and take stock. You will find your way back in the spring, a time of rebirth and renewal. We all say how strong and amazing you are, AND it’s ok to not always be strong. It’s ok to be angry and to feel the pain and sadness. Love you!

  3. I love you so much, Katharine. It is so painful to feel your pain in this and not be able to do anything. A Mom is SUPPOSED to fix it for her children. You know I am here for you whatever you need, or whenever you need something. I know you are strong and brave and smart and have a great attitude. And I know that that doesn’t mean you don’t have sadness and fear and worry and, even anger sometimes. I know you will once again rise above the sorrow, even though it is part of your every day and who you are. You have so much to share and show others – all of us who know and love you are so proud of you and all you do every day to make this illness understood and real for us, too. I am always just a phone call and a few short miles away.

  4. I am so very moved by you…..and your writing. I certainly cannot relate to your feelings, but having gone through some difficult times, I can relate to the comfort that isolation brings. I have found that the times when I was at a crossroads, it was easier to pull in….hide. People in general, seem to be so uncomfortable with “real” feelings…but there are people out there who can support, listen and be understanding of your need to sometimes just pull away…. especially during these cold and bleak winter days.
    I honor your honesty, and am in awe of how much you reveal your vulnerable side…..

  5. I can relate a teeny tiny bit via infertility but realize that is limited. If you ever want to email/chat about how faith/God helped me through it, I would be happy to. It really was everything to me. Regardless, I’m praying for peace and good grieving and cherished days for you, and even, somehow, joy. I’m so sorry you have to go through this, it is not fair. Love.

  6. K,

    This is such a brave post. It’s hard to find the words to articulate pain. One thing that struck me in your post is when you said “back to myself” at the end.

    I know from my experience (which is very different than yours), I will never get to be back to where I was. And that’s just apart of life I think. Learning to accept the cards your dealt, dealing with what comes your way, and somehow adapting and being a new you.

    On another note–though it’s not the same, I TOTALLY identify with not feeling joyous about my friends milestones and happy occasions. The mask becomes so hard to wear!

    I hope you start to enjoy what used to bring you joy before and maybe add some new things that bring you happiness!

  7. I hear ya! As a 51 year old with CF & CFRD, I still have these yearnings. But at 51, I really am too old to pursue this. Fortunately, I have 11 wonderful nieces & nephews & am friends with some of my friends’ kids. That helps a lot. But it’s not the same. I wish I’d been born a few decades later where I might have felt more comfy pursuing the options women with CF have today. I have friends with CF who have adopted kids internationally, and know of men & women with CF who have had kids of their own. You should seriously consider these options & others like surrogacy. See if you are comfy with any of them. Make sure you have your doctor’s support & help… And the support of your husband, family & friends. If so, go for it! Life is meant to be lived to the fullest. I’m so blessed to be quite healthy at my age. I may not have been this healthy if I had been able to have kids. But I didn’t feel comfy with that decision, then got divorced and didn’t want to do this without a partner. If you want to… Look into it & be smart & see if any options are right for you. It does get better! While I still wish I could have had kids of my own, I know I’m too old now, so I find blessings in the kids in my life & thank God every day that I am healthy – after grumbling about treatments, of course! I’ll say some prayers that God will help you as you struggle with this. Know that you aren’t alone! Hugs to you. Cherish your husband & family & you’ll find your way to where you need to be. 💜

  8. Whenever you are ready, I’ll leave a trail of breadcrumbs for you my love! Remember you are a beautiful, strong woman! xo

  9. Much ❤ to you. This sounds like some really difficult stuff to deal with. It seems like you're handling it with a lot of grace. I hope it gets easier!

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