B Positive

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Mary Poppins: perfectly imperfect in every way.

Warning: I’m going to be honest with you (and this is for all the future readers of this blog who just found out they have lung disease and basically want to punch a hole in the wall)…

Some days just suck.

There are discouragements. There are set backs. And there is a constant struggle between the life you have and the life you thought you should have.

It’s been a rainy, gloomy week and, for some reason, I’m in a mood…so I apologize for catching anyone off guard here. I can hear my husband saying, “Maybe you shouldn’t be writing right now.” Writing when you’re ‘in a mood’ is like grocery shopping when your hungry. Not a good idea.  But you know what, this is real life. My grandpa used to say, “Do the best you can, that’s bad enough.” Oh Albert, what a way with words.

If there’s one thing I’ve had to come to terms with having this disease, it’s that, control is an illusion.  For someone like me who is a little/big bit of a control freak when it comes to life in general, this is a really REALLY hard concept. We all have expectations that we put on ourselves or that we allow others to place on us and sometimes, we fall short. Or rather, life falls short.

You have a rare lung disease. You will not be able to have children. The medications aren’t helping. The numbers aren’t very good. Lung transplants are merely a trade of diseases. The recovery is unique and unknown. You should probably relocate. Move to the most expensive city in the country. Maybe you should look at this center or that center. You have a rare blood type (b+). You need to get going on this. Hurry up and wait!

Hearing this stuff gets old and sometimes all I want is a vacation from my body.

Truth is:

Some days you’re going to be sad.

Some days you’re going to cry.

Some days you’re going to be angry and you might even take it out on your family, your cute husband or your cat.

No amount of chocolate soothes.

No amount of sunny days distract.

No amount of hot baths, warm fuzzy socks or Netflix Documentaries make it go away

Brene Brown, researcher and vulnerability expert said it best:

“From the time I was a young child through my late thirties, I believed that growing up was about finding certainty and solving the mysteries of life. It seemed to me that the end game was answers and control – especially control over important outcomes and what people think. The formula was pretty clear: Vulnerability is weakness, self worth is based on what you achieve, and accomplishments and acquisitions bring joy and meaning.

“What’s spectacular about my life today, at forty-seven, is finally realizing that the prime of our lives is not about answers – it starts when we finally allow ourselves to soften into the mysteries and live in the questions. For me, the softening came after a long, painful midlife unraveling; fueled by the exhaustion that comes from too much pretending, pleasing, and perfecting.”

In life, you’re going to read a lot of numbers that scare you. People are going to tell you no. Your heart is going to hurt. You’re going think to yourself, “How am I going to survive this?” Am I going to be ok? What if this and what if that? Why me? There are going to be a hundred reasons why you think you should give up.

And the answer I keep being directed to is…Faith. Faith isn’t having all the answers. It’s believing. It’s hoping. It’s writing your own story. It’s getting out of bed…most days. It’s falling and then picking yourself up again. It’s praying even when you don’t feel like it. It’s learning to forgive yourself and start again. It’s filled with blood, sweat, tears, and fight. It’s surrendering to your unique journey. It’s messy and it’s beautiful and it’s yours for the taking.

And it’s ok. It’s ok not to be ok.

Soften into the mysteries. Live in the questions.

9 Responses
  • alecmjudd
    April 16, 2016

    Thank you for this post. I needed to read this today. Praying for you!

  • alecmjudd
    April 16, 2016

    (Also, I love the punny title. I’m a big fun pun fan)

  • Sugar cookie lotion and cold winter days
    April 16, 2016

    I learned a lesson by watching a family in a small southern town restaurant some time ago. There was a mother, father, and high-school aged son. From what I could tell the son had recently become the high-school football star and the local news wanted to interview him. As the crew was getting set up the mother kept telling her son to sit up straight, not to chew his food that way, don’t put your elbows on the table, etc. All of a studded the father interrupts and in a deep southern, worked hard all his life sort of way says, “what you fruntin for? Quit yur fruntin and be ya self, that’s what thesuns want.”

    At the time it was funny, but the father was so right, we need to quit fronting and be ourselves. Mack we all love you no matter how you’re feeling for the day or week or month. You may not know this, but that short time I worked with you you had such an impact on me and through your small actions taught me so much!! I love ya, and continue to pray that you’ll revive the strength you need to endure this trial!

  • Brooklyn Lamb
    April 17, 2016

    Mackenzie! It’s been so long since our college days. I love what you write- to live in the questions. A friend told me this very same thing the other day, it’s almost as if he had read your blog. He told me that our questions are more important than the answers we get to our questions. For they shape us more than answers can. Anyways… thanks for your words and I’m sorry to hear of your lung disease. You are a strong women and can handle anything( I hope that dosent come across real cheesy, although I fear it does) I really mean what I say though. You are a beautiful person, inside and out! Keep fighting your fight and you will be supported in your trials, that I know.

  • Scott Mears
    April 17, 2016

    I’ve loosely followed what you’re going through, and admire your courage through it all. Since I met you as the new kid in 5th grade, you’ve always been such an example to me as a champion of life in general. Even reading a post about how bad things are, I’m given a better perspective on life and a smile on my face. Thank you for always being a great friend, and remember that people everywhere are rooting for you!

  • kmetz18
    April 18, 2016

    You are the prettiest Mary Poppins ever. ESPECIALLY because of your lung accessories. YOU are the spoonful of sugar that helps all of OUR medicine go down. Pure cane sugar. Thanks, sis.

  • Heather Catterson
    April 18, 2016

    I dont have a rare lung disease but being a parent of a Type 1 diabetic child I can relate to your feelings. Your comment “there is no control” fits perfectly for what I deal w daily. There are days it’s easy, there are days I wish it would go away, there are days I pretend it doesn’t exist but reality always comes rolling back in. I wish I had some awesome words of wisdom. I dont. I just feel like I get where you are coming from and I’ve realized I need to accept those feelings because they are real and just as important as positivity, hope, and faith.

  • Wendy Migdat
    April 20, 2016

    This is so good in so many ways and on so many levels… I don’t know what to say … Just keep writing! You’re doing more good for more people than you will ever know…💕

  • Cassiepooh Richey
    May 9, 2016

    ‘It’s ok not to be ok’…. Please tell me you were quoting Jessie J?

    You made me cry. If I have bad dreams tonight I blame you….

    Hehe. I love you!!!!!

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