Anyhow, I suppose this post is going to take a rather raw turn, if you will...I really have been sifting through some things...my life is so good...I find myself so blessed...but, over the past few months, I have definitely been struggling off and on with some twists in this chapter of my life, lol. I guess I've been fighting with the author over a few details in my story ;0)
For those of you who know me, you don't really need to read this part...for those of you who are just now peeking in on my blog, well, I am "sick"...i have been sick for about three years, now...wow...three years...with a rare genetic blood disease that originates in my liver and sort of mimics MS on the neurological side of things. Three years ago, after finishing up as an MEP rep for his company, on the new cowboys stadium in Texas, my husband and I took our usual spontaneous jump into life and moved to Savannah to attend SCAD. In a nutshell, I became sick...very very sick...only, I had been getting sick all along and hadn't really listened to the warning signs. It felt like over night, i had gone from this spontaneous energetic mama who went to the gym regularly, held late night dance parties with my kids, created art into the wee hours...even functioned as a "single mom" during the seasons when the mister and I had to live in separate states while he travelled for projects to this slower, cautious, weak version of myself. Fast forward three years, I am beginning to learn to live with this disease, and, thanks to my doctor, we actually know what I have and I have meds to help me function as a wife and mama and can take many preventative measures to live a better longer life with the three people who matter the most to me.
Honestly, this post has been sitting unpublished in my little outbox or what ever you call it, for quite some time, now. I've struggled with whether or not I want to actually publish it...it's incredibly raw, and sometimes, I have a difficult time sharing my truly raw moments...mostly because, by nature, I am a pretty happy-glass-is-half-full-kinda-person and I guess putting my words down in written form, it's often incredibly hard for me to convey some of the things that I struggle with, without feeling like I am coming across as a completely negative person.
BUT, here's the truth...we ALL struggle, we all have pains and trials...and it's comforting to know that someone else has gone through what we are going through. So, I feel like it's high time that I share my experiences just for the sake of someone else who might be going through what I am.
One of the reasons that I don't talk much about my illness is mostly because I'd still like to believe it's not actually real. I like to close my eyes and pretend this illness was actually just a three year long flu bug...but...I guess it's not, LOL. Also, since I have been struggling with this disease for a few years, now, I've had several different medical opinions...for almost a year, I was told that what I had was most likely MS, so, it's also difficult to talk about what you have when you don't know what it is that is making you sick.
Over the past six-ish months I've really been having to process some facts of life, you see, having this genetic disease means letting go of a lot of things that I thought, made me me...it's been incredibly difficult to be such a free spirited person with a body that is not...I have had to start giving things up like spray painting (don't worry, I'm looking into alternate methods) and foods and products that my body can't detox...at times, it has felt like my illness has dictated my life...at times, I've started to wonder what was left of "me" in me...
There are days where I fear that I am losing "me" altogether...days like the day I wrote the post below...but...then, isn't that the point altogether? I found myself thinking about the words to the song "I Surrender All," and I vividly remember that song playing the night I gave my heart to the Lord, I thought it was so fabulous and divine that that song was playing...funny, I had no idea what it meant to surrender all...honestly, I still don't. Life is not about my purpose and my agenda, it's about living a redemptive story for others. I wonder how long it's going to take me to grasp this concept ;o)
(Written two weeks ago)
I've been sitting here writing sticky notes-surrounding myself with them-of the words I've said wrong, jumbled and mixed up with other words, or words whose letters I've simply omitted or changed.
At first I thought it was just fatigue, then it began to happen more frequently...
simple words- at work Kalamazoo became Kingamazoo, Toyota four runner became For-yota, Bob to bibe...yesterday I couldn't remember how to spell calm...I kept writing "alm" and knowing that something about it wasn't right, it looked peculiar...I looked it up in the dictionary and couldn't find (c)alm anywhere. Even as I write this, I am adding extra letters in places where letters form patterns.
According to my "group," this is a normal symptom of my disease...according to my neuro scientist friend, I am presenting w/signs that indicate my white matter lesions are...well...they are there on the language centers of my brain...
About the time that I was processing some of this, I hopped onto my friend, Brooke's blog and read this post and cried and cried at how brave Brooke's friend is...she is so much stronger than I and going through so much more!! The song she had on her video was this one:
"You make beautiful things out of us," it hit me...hard...this song and Abbe's video on BinRealLife
reminded that life isn't about me...and I am reminded of the painful process that comes out of sculpting something into a sculpture and sometimes when I am reminded of these things, I am able to see my life as something bigger than my own agenda. I have often thought of this post lately...it makes me wonder, what prayers have I prayed in the past about being made into the person God wants for me to be...what is happening in my life to shape me into this? Through struggle and suffering comes beauty...and when I remember this, as much as I have not enjoyed some of the pains that have come through this season in life, I cannot deny that it has drawn me closer to God, and I would never want to take that back.
“When we are no longer able to change a situation, we are challenged to change ourselves.”
― Viktor E. Frankl, Man's Search for Meaning
You know, I have always chosen to believe this...I often talk about beauty from ashes, about how God takes our stories and uses them...long before I got sick I believed this-I believed God takes our battered, our broken, and bruised and makes them new-better-beautiful.
Vicki (one of my besties) and I spend long periods of time discussing such things...we both have a love for the flea, for vintage everything...we love to find a discarded piece of furniture and make it new she describes it much better than I, here, we correlate this idea with art...we see such things and think they are yet another example of what God does in our lives...and yet, I never thought I would be challenged to believe it with my life...as I sit and think about some of the challenges I face, which btw are nowhere near as difficult as the challenges that many others face, I am asked...do I choose to believe that God can and will make something beautiful out of this? do I believe that God is making something beautiful and better out of me?
What is life all about? what does MY life say life is all about?
"But he knows the way that I take; when he has tested me, I will come forth as gold." Job 23:10.
"In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith - of greater worth than gold, which perishes even though refined by fire - may result in praise, glory and honor when Jesus Christ is revealed." 1 Peter 1:6-7
“If there is meaning in life at all, then there must be meaning in suffering.”
― Viktor E. Frankl