Why would I create this site in the first place? To every execution of a project, there must be a “why.” Instead of bullet points that could look like a line of ants trailing on the page because there are so many reasons, I will cut to the chase.
I was browsing the web a couple of years back, only looking for medical journal type articles mentioning information pertaining to a part of my illness. That’s when I happened upon a young woman’s blog that was only several years older than myself. I didn’t expect to click on a blog. It wasn’t my aim for a google search, but I clicked out of curiosity.
I was looking for factual evidence elsewhere, here, I found stories of a young woman so seemingly put together but facing health challenges like my own. I had felt like in a way, I had a kindred spirit who understood my life.
What made her voice so much more attractive? She still retained a sense of hope. She wasn’t able to continue with her high paying job, her social life was a desert at times because of her unmet need for health that would propel her out. This wasn’t a “how-to cure yourself” guide that I had become fed up with, or complete rants from someone who just thought her life worse than everyone else because her young life took a decline in health. This was someone who was truly authentic who faced some pretty rough challenges but still had [gasp] hope!
I searched for her blog later, wanting to re-connect with her story, typing in every keyword I could think of. But her website must have been permanently deleted. I didn’t expect to actually feel saddened by a nixed site, but I was.
I had the thought to create a blog….
In fact, I had one already created that was faith based (it’s still in cyberspace somewhere, untouched and might as well have a RIP notice on the top of the page). I thought I would re-launch the blog and add some book reviews and continue with musings that weren’t as personal- writings that wouldn’t break my veneer.
Yet that blog that helped me was a seed planted that sprouted into an idea to at least reach out to the hurting (like me), only I planned to be anonymous. No pic of myself, no description of moi, just a (hopefully) clever health URL.
Yet, I was persuaded to actually be me from so many people out there. I relented….then I realized after my health really tanked that remaining private wasn’t an option anyway. My hedge of privacy was shorn from videos of myself at my weakest, public articles concerning my decline in health, and the like.
I was so used to my privacy fence, especially as it’s concerned with my health. I hardly ever went out of the house without a tube of lipstick to my mouth and a coat of foundation to bring life to my face. It made me feel healthier and put together, so imagine my shock when there were videos of me with eyes rolling back, convulsions, sweat, hair splayed out awkwardly, motor tics that already make me want to be stowed away like Bertha from Jane Eyre. Why couldn’t I just be hidden out of sight like Bertha? Oh my goodness- what do I do?! I just wanted to be hidden away until every event was just a faded journal entry.
It was like I was revisiting those nightmares of my youth where I ended up at school naked while everyone awkwardly stared.
What about my image?
What about my privacy I was trying so desperately to protect?
On those rare moments where I went out, I silently wondered, do people think I’m autistic? I keep shoving my fingers in my ears from extreme sound sensitivities. My body would tic. I looked down out of embarrassment and fear. Were there teens making fun of me? Were there others who pitied me? Were there others who just plain wondered why a guy like Michael would be with weirdo girl in the wheelchair? ‘Cause quite frankly, I thought the latter part. We just didn’t fit in those moments.
Thankfully I was able to retain more composure during office visits that had me hooked up to IV’s because the stimuli were close to zilch and the reclined chair would help my body to feel as if it was in a “resting state” providing less output for my brain…and I would usually have extra meds so I wouldn’t freak out nurses. 😉 Moments like those are blessings…Other office visits are a little different I’ll just say.
As seasons passed, I began to look a little more normal on our outings, until we stayed longer than we should, creating the socially awkward mix of stuttering and tic-ing.
I still feel that awkward wave of embarrassment, wanting to stay frustrated at myself for the odd robotic voice that’s produced, stutters, and tics, increased pain, all feeling so far from who I was years ago. But then I remember the slow transformation over time and find myself grateful that I can have those moments of short reprieve. That’s such an answer to prayer, one that I hope would not be taken for granted by myself or my husband.
“You don’t realize Jesus is all you need, until Jesus is all you have.” -Tim Keller
I’ve clung to the incarnate Christ possibly more than I have before, amazed at the harrowing trials He faced yet carrying the faithful steadfastness that seems impossible given the circumstances. Oh, to be like Christ! His own sweat, humiliation, and times where He wanted to hide in His Father’s presence all became more raw to me. He could have hidden Himself in the times where He was publicly shred of dignity, but He didn’t. These moments of His life will flash before me. It is in those moments where I realize how much I depend on Jesus, my great high priest who has suffered in every way I have, yet is without sin. Oh, how I need to boldly come to His throne room of grace to receive mercy and grace in my time of need.
These words are easier to conceal, but I feel like if I had to be outed with my physical limitations, I might as well take the torch that I wish was never extinguished by that one young woman that brought a sense of hope and solidarity. There must be a reason.
I pray these words matter, even if it’s just for one person like myself years past, impacted by a simple blog.
God’s Blessings to anyone who finds these words. May they bring you hope through the Maker of heaven and earth who works through our broken pieces…”to give them a crown of beauty instead of ashes, festive oil instead of mourning, and splendid clothes instead of despair. And they will be called righteous trees, planted by the Lord
to glorify Him.” (Isaiah 61:3)