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.
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.