I write here for two main reasons:

1) Writing helps me think things through.  

Putting my thoughts on paper (and since I much prefer typing/dictating over handwriting…I also prefer digital paper) helps me process through them.  When your house is messy, it can be hard to think straight; you get stressed out and you seem to spin in circles, unsure of where to start first…you don’t feel so great when your living space is all a jumble and it can be almost impossible to relax or feel “at home”.

jukebox with records vinylsWell, the same is true with me and my brain – my brain carries around a TON of thoughts and thought clutter each day.  I’m constantly problem solving to survive every single moment; I’m I’m also thinking about those more existential questions of life because I’m naturally a thinker; and many days I have disconnected and repeating thoughts that are both bothersome and severely annoying.  After all, I have ADHD, which makes me excessively creative but also drives me to the brink of nutsiness daily.  I hear music in my head 24/7 when I’m awake and it could be anything from Lamb Chop’s “This is the song that never ends” (you hate me now, don’t you?) to “Jesus Loves Me” and I often cannot control what plays in my mental juke box…only Ritalin makes the juke box turn off.  Some of the thoughts take on a slightly obsessive nature, things like spelling a word over and over again, or being truly perturbed that my checkbook didn’t balance to the cent and being unable to let it go even while doing other activities.  These thoughts are as annoying as a skipping and scratchy record playing on repeat in that poor old jukebox.

Daily I find myself trying to sift through tsunami-like waves of emotion, both good and bad, which chronic health problems tend to bring.  I often wish I could simply blunt my emotional lows and highs, but being by nature a very strong-feeling person (which helps me connect with other people and provides me with a developed sense of intuition), this just doesn’t seem possible without mind-altering medications.

Writing, therefore, is my medication.  If I cannot blunt my emotions and thoughts, I might as well bravely plow through them and express them, weighing which reflect truth and which reflect false beliefs, then proceed to live life as best I can by walking the paths carved by my thought-plowing.  I try to use the Word of God as my measuring stick in determining which emotions/thoughts reflect truth or falsehood, and this is essentially the same as taking my thoughts captive.

We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ.” (2 Corinthians 10:5)

Once my brain-house is cleaned up a bit and things are put on the appropriate mental shelves, I can rest and move forward with my plans, goals, hopes and dreams.  The very act of speaking my fears “out loud” is akin to staring those fears in the face.  Once I’ve had the courage to look directly at them, I can apply truth to them and keep going.  If I don’t process all these things somehow, eventually I fall apart….and trust me; that AIN’T PERTY!  If I keep my brain-house in shape, I’m in a better position to also be there for friends, neighbors, and others.  If I’m utterly distraught and overwhelmed by the untidiness then I will have no resources either mental, emotional, or physical, with which to bless others.  When the house is a mess, you feel guilty for leaving to go out because there’s so much that needs to be done at home, and this locks you in the jail of circulating mess.  Clean sweeping and then keeping up with the cobwebs (although not perfectly) allows us all the freedom to get out, bless others, and enjoy life more fully.

One other benefit of thinking through the messy brain stuff is that I often find reasons to rejoice; I find hope mixed into the mess.  Do you know a person who just has that beautiful ability to find the silver lining behind most every cloud and yet who isn’t annoyingly trite about it?  (i.e. NOT a Pollyanna)  Those kind of people are hard to come by I say.  Yet oh!  How refreshing they are to a weary soul, no?!  I’d like to be one of those people – one of those genuinely, convincingly, and 100% sincerely joyful and grateful people who refreshes others because they themselves are refreshed by God with the hope they have in the midst of the storm.  That’s a tall order, and I recognize it takes practice.  Writing helps me become that deeply joyful and grateful person I want to be as I chip away the stony rock around the diamond in the rough to reveal its shining beauty.  The canary named Hope reminds me that God is at work in the dark caves and mine shafts of my life.

2)  I’m not alone…and neither are you.

Fighting multiple rare (and scary) diseases sure is lonely!  Most folks who have the conditions I have know no one personally who also has the same condition and lives within driving distance.  I sure am grateful for the internet!  I’ve often asked elderly friends how people used to get information before the internet, and how folks would connect if they had rare conditions.  From their responses I gathered many trips to various libraries would be in order, phone calls, and prayers that you’d meet someone who knew someone, who just might have known this other someone.

party for oneEven though we’ve come a long ways in information availability, I think there’s still just a gut-felt loneliness when NONE of your friends or family members are truly able to understand what it means to live as you must, with the sorrows, joys, challenges, losses, gains and victories.  Especially those joys over the *little things* that most folks take for granted – those “party of one” moments when you wish SOMEONE ELSE could experience the same joy/pride/relief you do when that “little thing” goes right…when, after fighting for it with all you’ve got, it finally WORKS!  

It could be struggling every day for months to put on your shoe, and you’re finally able to tolerate wearing your shoe for 5 minutes.  Or you’ve had bowel trouble for years and finally you figured something out that brought a a tad more relief…how do you share that joy?  Perhaps you’ve struggled to read due to nystagmus (eyes shaking) or double vision for years and your condition has finally improved (gluten ataxia in my case), and you just want to read all day and night because you CAN!  Maybe it’s one of the rare days you feel like you have enough energy to breathe and play your musical instrument, so you want to practice at 10:00pm and your lovely melody is, shall we say, less than appreciated?

Sadly, sometimes the rain starts spitting on your parade.  Sometimes the joys come from such a “little thing” that your friends or family members raise their eyebrows in baffled curiosity at your exuberance.  As hard as it can be to find a friend who will join you in your sorrows, I suspect it can be even harder to find a friend who can genuinely join you in your “little thing” joys and transform those “party of one” moments into a “party of two”.  This is just an example of a few of the moments when having a relationship with someone who GETS IT down deep (usually because they’ve been there, done that) is refreshing beyond words.

If I’m going to write, I am going to write honestly, even when it stings a bit to “put it out there” – and sometimes it does sting because by exposing my thoughts and the hard stuff I live with every day, you dear readers get to see the “other side” of my life behind my smile.  My smile is genuine, but so is my pain and the messy thoughts that spin around my brain.

I feel my vulnerability serves those who feel alone when coping with this hard stuff – YOU ARE NOT ALONE, I’m in the trenches with you!  Don’t give up!  My hope is that my vulnerability may also give caregivers, friends, and family members of Survivors a clearer understanding of what living with these challenges really IS like day to day, for worse and for better.  Perhaps ironically, even sharing my experiences helps me feel less alone.  I don’t know who reads my blog (except Vicki – thanks, dear! and those 2 friends to whom I sometimes send my blog posts) and obviously there aren’t many comments, but I know people are goggling and coming up upon my pages by searching for CRPS, so what I do share is reaching its intended audience.

———————

In the end, if the only person I write for ends up being me, I’m okay with that.  It’s a good outlet and I find it healthful as well as helpful.  I’m doing something constructive rather than destructive as I cope with all of the above, and I think that’s about all the more anyone could ask.  🙂

So now you know!  😀  …Just in case you wondered.

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