Splitting Airs

by

I haven’t been able to write for a while. I’ve had a lot that I’ve wanted to say…but it was stuck, lodged somewhere between my head and my heart and my craw – a serious case of emotional constipation. And I think I know why.

When I was first diagnosed, I was desperate to find anyone who might know what I was going through. Unfortunately, all I found was the blog of an individual with a similar illness that honestly did the opposite of inspire. This writer was scared and depressed and didn’t have many positive things to say about the physical toll of lung disease and consequential lung transplant. It was then and there that I 1) decided to start a blog of my own and 2) made a promise to myself that I would be real about this journey and, more importantly, that I would give people the hope to indeed be happy in spite of lung disease or any of the millions of other ailments and trials we all face. This, to me, would be a giant middle finger to this whole “getting sick” thing. I metaphorically pounded my fist onto my desk and in my best Rhett Butler voice declared, “I’ll be damned if this lung disease defines my happiness!”

But truth is, it has. As of lately, at least.

I could paint you a picture of the rollercoaster that these past few months have been. I could tell you about the clinic and hospital visits and the good news and the bad news we’ve received. I could tell you about the medications I’m on and their difficult side effects. I could tell you how my diet is really restrictive and how in spite of my best efforts at the gym, my results are painstakingly slow and discouraging. I could tell you about learning I can’t carry children and probably never will. I could tell you how limited I often feel and how sometimes I want nothing more than to be normal and to have a normal life.

I find myself constantly looking for an escape. Escape from my body. Escape from my situation. I look at homes and vacations and clothes and puppies and things I think will make me feel better about myself. I find myself on edge and I often take out my hurt and my pain on my husband, the one person who knows better the exact brand of struggle we are going through. Truth is, I’m not happy with myself. I’m at odds with what is. And I’m always saddest when I’m at odds with what is. And I’m ashamed to admit that over these past two months, I’ve had moments where I felt angry at God, for the first time in my life. In a time when I should feel hopeful and optimistic, I’ve questioned what it’s all for.

So…back to my original goal, to not let lung disease define my happiness? Oops…Rhett Butler, gone so soon?!

I haven’t written because I didn’t want to have to sit down and tell you this. I didn’t want to tell you I had failed. Worst of all, I didn’t want you all to feel like you would fail, too.

When I was diagnosed with my illness, I had an idea of what to expect physically. What I wasn’t prepared for was how having an illness affects you mentally and emotionally. It’s crucial to pair any physical regimen you may have with a spiritual, mental and emotional regime. I’ve had to learn that my hope of healing depends on taking care of all these equal parts of who I am. They won’t always be in perfect balance, but that’s ok. I just have take a personal inventory and make some adjustments (that’s what I’m trying to do, anyway).

Every journey, every illness, every trial is so one-of-a-kind, with unique challenges and ups and downs. The realization I’ve come to is this: I need to stop holding on to the old Mackenzie and embrace the new Mackenzie. The one who has fuller cheeks (and a hump…yes…a hump) because of the Prednisone. The Mackenzie who walks a little slower and sleeps with an alien death star mask to help her breathe at night. The Mackenzie who eats salad instead of pizza because her life depends on it. The Mackenzie who plans trips around her oxygen usage. The Mackenzie who seeks to fill her husband’s needs beyond her own. The Mackenzie who can’t go hiking, but can manage a level river trail just fine. The Mackenzie who’s coming to know the value of life and how quickly it can all change, who will find her place and calling in this world – not in spite of all she feels she may lack, but because of it.

17 Responses
  • andrea hibbeler
    March 24, 2017

    You are a strong beautiful young woman ans you will get thru this. And it is ok to be angry with God. That is a part of life. He is our father. We can be mad at at Him yell at Him and still love Him. He still loves you.

  • Tiffani
    March 24, 2017

    Mackenzie, everyone gets in a slump now and then. Even Christ asked to have his cup removed. You are an example of faith, determination, and optimism, not to mention my hero. I can’t imagine experiencing what you have been through so there’s no way I can say anything inspirational, but know you are loved.

  • Sarah Wells
    March 24, 2017

    I think this is the bravest thing you’ve shared yet, and I love you even more for it.

  • Jennifer
    March 24, 2017

    You’re still amazing! When everyone else is hiking, I’ll walk that river trail with you anytime.

  • Abbie DeVries
    March 24, 2017

    This was wonderful, thank you for sharing! I felt and still feel a lot of what you’re going through emotionally with my own health issues, and it sucks. But you are wonderful and inspire me to think more positively every time I read your posts. Thank you ☺

  • Laura
    March 24, 2017

    You are a beautiful soul. You are making the best of what has been dealt to you. You’ve inspired me to live a little better and be more grateful and to look to the beauty in the midst of my life challanges. Thank you for this post. I needed it today.

  • Stacy Hamilton
    March 24, 2017

    So well said. Greg and I are on that journey with PF, but farther down the road since he was diagnosed 9 years ago. You do have to let go of what was and embrace the here and now. Not always easy…we have chatted on instagram about it. I will say the mental part for both Greg and myself were harder in the beginning. Hugs!

  • Katie Sooto
    March 24, 2017

    Atta girl!!! Chip UP! Super proud of you. This honestly breaks my heart, but is so real and gives me hope and strength at the same time to face my own struggles with a renewed faith and heart. You are a heroine in every facet, rolled into one! You will get through this! We are all here by your side to support and love you through this journey. Little do you know, you BLESS US all and bring out the best in us when you keep it real. So, this very moment, may you be BLESSED 1,000x in return to see the fruits of your work. Love you sister. AMEN!

  • Karin
    March 24, 2017

    I find your writing so beautiful and thought-provoking. Thank you for letting us in. It makes me re-think how I am living my life.

  • Caity
    March 25, 2017

    Really though, anyone who knows you knows how beautiful you are, Mackenzie, no matter the moon face and humps caused by steroids. You’re a beautiful soul and a beautiful daughter of Heavenly Father. Hang in there. You’re in my thoughts and prayers.

  • trish
    March 25, 2017

    😪😪We love you Mackenzie! Whatever you need whenever you need. We are here for you. 😘

  • Darci
    March 25, 2017

    You are an amazing woman, if you didn’t share the hardships of this disease you would be giving false hope. You are so cute and full of life, I love following you guys on Instagram. Hugs

  • Memri Skouson
    March 26, 2017

    I love you Mackenzie! From one “humpster” to another. Sometimes is just sucks and it’s ok to feel it! Keep on keepin on! I know the feeling of loss when we can’t do what we use to do, but eternal perspective is what I try to hang on to. In the mean time, I am working on being content with salad, level hikes and a great husband like you have! 🙂

  • Susie Hyde
    March 26, 2017

    Just want to let you know, Mackenzie and Henry that you both are amazing at expressing yourself and telling your story!! My husband had a double lung transplant a year ago and he got his life back as we pray you will!! Every step of this journey, that none of us asked for or did anything to deserve, has taught us so much! It is all in God’s Hands and on His timetable. The hardest part is the waiting and wondering every day if this is going to be the day! Hoping and praying it will come and then feeling a little guilty that that prayer also means someone has to die! Both will fulfill missions. My husband and I have appreciated all that you share….your heart and soul going through this experience that no one can totally relate to unless they have experienced it themselves! I just discovered a volunteer program where you can become a Donor Ambassador! The company is Donor West Network. I am very excited to get involved as a way to give back and take away the stigma of being a donor. You go to events and talk to people about signing up and being a donor on their driver’s license. There are opportunities to go to the high schools and talking to the kids about putting that dot on their license to become a donor. Such an important program, for as you know there is a shortage of donors!! Something you might be interested in!! You both would be amazing and could have such a powerful impact!! Every day is a day closer to getting those new lungs! Try not to get discouraged! Keep visualizing it happening!!! Bring that energy home to you on a daily basis!!! All my best to you both!! Susie 😊

  • Kay
    March 27, 2017

    My husband suffers from MS. I am slowly losing him. As I read your article it showed me that you are going through the grieving process. One of the stages is anger. Anger at life….at God …. At the spouse you don’t want to leave. I understand the wanting someone else’s life. We want to trade places with someone that doesn’t have any trials and their life is full of blessings.

    I take it one day at a time. I can’t look forward because I can’t handle the future. I don’t want to think of losing my soulmate. I don’t look back because it makes me sad to see how much my husband has declined. I can do something today because I am in today.

    We were not able to have children. We will enjoy our children in heaven and they will be Angels.😇

  • Veronika
    March 27, 2017

    Dear Mackenzie,

    today I was driving to a company event on the countryside, I’ve been feeling “funny” lately…not happy with what I have, wanting more, bigger…and on the way to this event I had to stop for about 40 minutes, the traffic stopped, we didn’t move. When finally the cars started to drive in a few meters, I saw why we stopped: accident, the guy who drove a motorbike had no chance to survive… he was on the way to his family? home? or work?he will never arrive…and I’m sure he will be painfully missed by loved ones.
    So, life is precious,we are all lucky to be able to experience day by day… wishing you lots of strengh, your words really touched me I hope that happier times are coming for you. Be safe! Veronika

  • April
    April 28, 2017

    You are amazing. You both are. Have you heard of a plant-based diet? I have no clue if it would help you feel a little better but everything I’ve read seems to suggest it can help us get to a healthier place. It sounds like you already have a plan food wise, but I thought it couldn’t hurt to throw an idea out there. Thanks for keeping it real and for sharing your heart. This must be sooo hard and exhausting and yet somehow you are doing it, and with a beauty and a grace that we all wish we had!

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