Invisible

This year has been intense; a year full of torture, hope, despair, love, weakness, support, strength, inspiration and invisibility.

I used to hide my MS because I didn't want people treating me differently. The first 5 years I had no idea why my issues with vision, hearing, intestines, pain, nausea, or fatigue existed. Sometimes I'd have cognitive issues, balance problems, walking slips and then at other times it wouldn't be an issue. There was a level of shame I couldn't shake. Looking back, I can see the heat intolerance, exacerbations, smaller relapses due to triggers, and the diagnosis all along. In 2002, I got the results from my spinal taps that I had MS and I was happy for about 30 minutes. I had an answer. All of my weird health issues had a reason. I wasn't alone with a disobedient body. And then reality sunk in a bit deeper and I was dismayed. (Full diagnosis wasn't made until later when brain lesions showed up). Even with a diagnosis, I continued to hide my disease as much as possible and carried shame for being different or needing any type of help.

Once I got pregnant, my health declined more rapidly. Each year I've continued to decline, especially the year my neurologist wouldn't listen to me and I had my worst exacerbations. I lost more of me becoming more invisible as a person all while my MS became more visible. I tried the hermit life, avoiding help or even much social interaction, because once again I had no answers as to why the weird things were happening. I felt like I needed to just push through the pain and odd symptoms just like I had the previous 15 years. But this time I simply couldn't deal with it on my own. I HAD to have help. I was left with confusion and shame because I couldn't deal with normal things like the laundry or going outside at all. I didn't want to be an inconvenience to anyone. Instead of acknowledging a need for a cooler environment when I was away from home, I would give up my vision, hearing, slow working intestines, and eventually normal nerves all to not stand out. I didn't want to be excluded, invisible, forgotten, or a topic of conversation. In time, though, people stopped asking me to go places, because they figured I couldn't go anyway. Since I never knew when I'd have a bad day versus a good day (physically), most people assumed I always had bad days. This is all completely understandable and not cruel, but simply a result of the unpredictability of MS. As my MS-created Trigeminal and Occipital Neuralgia took the spotlight, I shoved myself under the stage to become a spectator "underground" in life instead of playing an active role like everyone else I saw. It seemed like my world kept stopping while everyone else kept moving along.

This past year was the peak of my invisibility. When you can't talk, smile, laugh, or do anything, people want to help you avoid as much pain as possible. I didn't realize how much I smiled, even at strangers, or talked just at home. Not being able to communicate makes others uncomfortable and is frustrating, to say the least. Soon many people just avoided me so the facial/head/ear pains wouldn't spike. Or I hid away and avoided contact so as to quash any uncomfortableness (my depression and anxiety were factors as well). The pain never disappeared by avoiding, but they were attempts to make the pain less pronounced or frequent. However, the slight absence of pain translated into silent nothingness. It is WORTH the pain at times to talk, smile, laugh, and interact with others because doing nothing is the slow death of a soul. Awkwardness and pain were at times worth the connection with others. I imagine when we look back at our lives we will also say, "It was worth the pain."

I have gained a greater appreciation and love for those who cannot communicate. My pain has mostly moved into bearable levels. I've adapted and use different ways to communicate. I've learned to be okay with awkward and to hide away less. I'm still greatly limited and have to be careful. But the shame has been replaced with strength. I've also decided that the only one who wants me truly invisible is Satan. They say, "No man is an island," but Satan would love to put each of us on a scorching hot island surrounded by sharks of despair, isolation, shame, hopelessness, and feelings of inadequacy or being unloveable. He would wrap our entire self-worth in our position, reflection, surroundings, and material possessions.

My island is hotter and smaller than yours. 

I haven't received rain, like you have.
My clothes are tattered and torn. 

I can see you in the distance chilling in a hammock between those gorgeous palm trees, 
sipping coconut milk with a hand carved straw, laughing with someone named Wilson. 

Therefore, I am a loser. 

Also, how'd you make that straw?

In Matthew 13, Jesus talks in parables but I find an applicable depth in more than just a spiritual sense. He talks about seeing, hearing, healing, understanding, treasure, pearl of great price, separation by the angels, and SHINING vs wailing and gnashing of teeth. While only parts of this apply to me spiritually, there is a great deal that physically applies to my 2017. Physically after my failed minor brain surgery, as the anesthesia dolorosa, trigeminal, occipital and geniculate neuralgias took over, there was a good amount of wailing and gnashing of my teeth. Literally. haha

God doesn't want us to hide away, alone, in a corner of our suffering and odd mixture of pride and shame. He wants us to turn to Him, follow Him, give our burdens to Him, and SHINE. He will make weak things become strong, lift us, and walk with us through our struggles. HE may be invisible to our mortal eyes, but WE are not invisible. We don't need a super power of invisibility. We need to understand our own power, coupled with God, to be visible and allow Christ to shine through.

This past year I have understood things like never before. I have felt a closeness to those on the other side of the veil that I've never experienced before. I have decided to shake off my cloak of invisibility and step into the light. And thankfully the wailing and gnashing of teeth is minimal these days. Hallelujah.