I was inspired this week by a friend, Kait, who could tell you the first, second, and third thing about struggling with chronic illness.
She posted about having to give up an opportunity to study abroad in order to begin a more intensive medical regimen to push her Myasthenia Gravis into remission. She inspires me all the time and reminds me that I’m not alone. She talks about living the width of her life and not worrying about the length.
So I decided I’d write what I’ve let go and send it out into the blog-o-sphere. After a week of choosing my words, these are the things that I have walked away from almost entirely because getting better was the only option and it didn’t allow for the experiences I thought would make my life worthwhile. A lot of these things I am still grieving. They may be news to some. But hopefully, if you read this, you’ll see something you or someone else had to give up and you won’t feel so alone and maybe you can tell others so they don’t feel as alone either.
This isn’t a pity party. More like, a party honoring healing being more important than things we hold onto as being markers of success.
I have to follow a very specific schedule. I have to take my medications within a certain window and go to bed around the same time every night so that my medicines will be in my system when they need to be there. Trying to sleep without them is impossible.
This has meant saying goodbye to staying up past 10PM most nights, no midnight premiere movies, and probably what I miss the most- no more Easter Eve services that last until morning.
Waking up before the sun is also not an option unless I can go to bed by at least 8PM the night before.
My medications have made it clear that they would have me sleep for 12+ hours. Fighting to get less than 10 isn’t pretty.
I wanted so badly to be an actress. When other girls were dreaming about who would take them to prom, I was dreaming about walking down the red carpet after winning an Oscar. Seeing my friends moving forward in their careers as actors has been a constant struggle to remain positive and support them and try to ignore the massive slap of shame that says, “Look what you could be doing if you weren’t so sick.”
I can’t go anywhere without Doug. I get confused by my surroundings easily, forget where I am and he is the only person really equipped to handle it. Going to the hospital for three months is going to be interesting.
I’d love to go overseas, go on mission trips, or even just drive a couple hours and see a friend without having to worry about being alone, getting confused, or getting over fatigued. Travel is exhausting when you struggle with chronic fatigue and it can make going by yourself impossible.
There have been jobs that I loved that I had to leave because of being sick. Anxiety wrecked my days. Getting out of bed after working even 5 hours would be futile. I just couldn’t make it. Even now, I have to sleep whole days away to make up for the small amount of work I do at the bookstore.
I hate not being able to contribute financially to my marriage and all too often I have to be reminded that what I bring in doesn’t define my personal worth. But there is a sinking, terrible, feeling that accompanies seeing the bills stack up and not being able to help.
I am so good at flunking classes now, my gifted ed teachers probably wouldn’t believe it. When your stamina level is zero…so is your grade point average.
I come from a part of the country where having a degree is as expected as having a pulse.
Kids from Northern Virginia who went to community college all have a full cache of anecdotes related to being snubbed, judged, thought incompetent, or generally mocked. And, mind you, those are kids who were attending a college. Don’t even ask about anyone who went to trade school or *gasp* just got a job after graduating.
Even still, people ask, “What did you major in?”, they assume because I own a store and figured out how to use Creatspace that I must have some sort of credentials. It’s a weird question because I majored in a lot of things, I just didn’t finish.
The last five years have been an uphill battle between GOD and I wherein I have tried to look at His will and figure out how to be “qualified” and He has been shaking His head and silently qualifying me to keep being a human.
The amount of pressure that has come from trying to have a piece of paper to back up my experience has been enough to produce any number of rough diamonds. None of which, I could see the value of until I just made that analogy.
Maybe I’ll go back to school. Maybe I won’t. Who knows? But it doesn’t define my worth.
See above for all the ways that letters behind my name don’t make me a “qualified” person. But I really, really, really, wanted to be a priest. Sometime before 30.
Online ordination here we come!
Pretty much every medicine that I’m required to take would make trouble for any life trying to survive inside my womb. I don’t know when I’ll be able to function without it, so I’m essentially barren-until-further-notice. This is a much larger sacrifice for Doug, who wants to be a father more than any person I have ever met.
But anyone of my friends can tell you how much I would like to have a child. I haven’t said it before, but it’s easy to tell when I am around their children.
So, please stop asking us when we’re going to have kids.
You would not believe the people you have to straight up cut out of your life because the knowledge that they are hurting you is not enough to make the circumstance change. I can’t be around people I can’t trust. I can’t enter into situations where I don’t feel safe. I have a triggered disorder. When friends lie or steal or do selfish things that are harmful I have to let them go.
Making friends is ridiculously difficult because you always wonder,
“When am I going to freak you out?”
“When is this going to be too much?”
and sadly, when you have a chronic illness, you reach that point with people. I have a friend who lost friends after her husband died because she was “too sad”. TOO SAD? Her husband DIED, SUDDENLY, TRAGICALLY, you’d think her friends would be available. But nope. You chalk it up to bad friends. But overwhelmingly, when you are experiencing an enormous amount of brokenness at any given moment, people tend to find reasons to not be around you.
So now, I find myself fighting back all the nerves of a middle school boy asking his crush to a dance when I ask anyone to hang out with me. I’m pretty sure if they said no I would burst into tears.
I know that I have the unique privilege of having a chance to be part of a new family for this season of my life. If you haven’t read my post about getting adopted, it will fill this one in a bit more for you.
Regardless, I have had to walk away from my family of origin. While Doug was calling his parents and being excited that we opened the store, I was trying not to cry thinking about how I couldn’t call mine. While my friends post adorable baby announcements, I find myself worrying (still) about how they will react knowing, when the time comes, that they won’t meet their biological grandchild. They lost the right.
They rejected me. As I am. I am ill and they refuse to believe that they are any part of the cause.
Anxiety and depression make going into any group of people difficult. If a church service is too big, I won’t do well. If a church service is too small, I won’t do well.
If there are people in the congregation who have hurt me, I can’t stay. There could be 100 people who love me, but dissociative disorder just lets me see the one that doesn’t.
We haven’t been able to find anywhere to go.
I miss it. I miss going to a service. But I am learning that GOD is not limited to Sunday morning. He isn’t limited to meeting for Bible studies. He isn’t limited by my limitations. He can meet me wherever He likes.
Letting go of organized Church has allowed me to let GOD meet me where I am. Better or worse. I don’t have to clean up for Him or anyone else.
Letting go of these Earthly ideas of being whole or accomplished or even loved has challenged my view of GOD and allowed me to dissect what it means for me to be well. Just me. Not anyone else’s version of wellness. I can’t compare my life to anyone.
But I’m not limited by my limitations either. Instead of acting, I’m writing. Instead of travelling, I’m learning to love right where I am and see the beauty all around me.
I am learning what I like to do, how I like to spend my time, and (anyone with a trauma disorder will get this one) how to have feelings.
I wouldn’t be able to live the width of my life if I was focused on my predetermined markers of success. No, I’m not happy all the time. Yes, I get frustrated when I can’t do cool things like stay up late or go to Sea World because I have C-PTSD. Yes, I get embarrassed when my husband has to dress me because he can’t leave me alone and I need to be wearing clothes. Yes, I get angry that I can’t just go out and get a job to help with the bills.
But it doesn’t change that GOD is shaping my future and my present and using my past to equip me to do great things.