Lent 2019: Uncommonly common.


Still posing for selfies even with two needles in my chest for plasmapheresis… while wearing a jaunty beret. (taken March 2019)


Last Sunday, Z and I met up with my girl Nicole and her daughter for church. We visited an Anglican/ Episcopal parish close to my home. Although we are all officially members of another Episcopal church a couple of towns away, neither of us, for various reasons, have been there since last year. (Look, maybe I’ll go into why in another post, but that’s not what this is about). We weren’t first time visitors- her aunt is a member and I first checked the place out in 2014.

The Gospel reading came from I Corinthians 10. Check out verse 13:

“No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.”

This has been one of my favorite verses for almost 15 years now. I like that it begins with a resounding “NO”. Paul got right to it- there is NO temptation- zilch, zip, zero. Not even one. Or a percentage of one. There is nothing that can crush us that hasn’t been a norm to humanity. So no matter how huge, or weird, or small a problem, someone has gone through it. You’re not a snowflake.

During the pastor’s homily, part of a Lenten Bible study, the Rev. gave me a shoutout (it should be noted this is not one of those Frozen Chosen-type Piskie congregations). He then mentioned that when he met me, I was healthy and walked in fine; whereas now I have a disability, use a device, but I’m still “bright and smiling”. Let me break here to explain:


    1. While I don’t exactly like being used as an example of the trials and tribulations of life, I understand that I will be. I don’t want to be flattened into a prop for a “life lesson”, but I have been and will be made into a subject du jour for people.
    2. What he said about how I was when I first visited the church five years ago was false; I was definitely disabled, not working, had a port in my chest for regular IVIG treatments, and even walked with a limp. I used a fold-up cane, too. But, not a walker. As I mentioned a couple of years ago, quite a few people didn’t actually get that I was sick until I began using the rollator. My “invisible illness” became carnate in the form of a mobility device. 
    3. I was not bright on Sunday; my sweater was. I was actually jonesing for a coffee.
    4. I don’t really feel any particular way about having my disability mentioned in the course of the sermon. While I cannot and will not continue going anywhere outside of my doctors’ offices that solely focuses on my having a disability, ignoring Alisha THE PERSON, I don’t care if it’s said. It’s a fact about me, like my nearsightedness, coily hair or being short.


Continuing on with the story: while he was taking, I thought about a visit to Z’s pediatrician taken a couple of days before. Z is fine, just overdue for a general check-up. Her doctor greeted me with a hug and asked about my health, commenting on the walker (last time I went, I didn’t have it with me… it’s amazing how attention grabbing an 11 pound, four wheeled black piece of metal can be. It has, by far, become the most prominent thing about me to others. I sometimes wonder if people are actually seeing the person pushing it. Anyway, Dr. K became teary-eyed about my health. “Well, you know more than most know how things like this just happen. I mean… somebody is going to be that ‘one in a million’ with a rare autoimmune disease. It just happened to be me this time.” That didn’t cheer her. “Sometimes it seems like it’s always the best people.” I smiled at her. “But you look great and are smiling,” she concluded. Um, let’s break one more time:


  1. I was legit smiling at her. She is awesome.
  2. I didn’t have time for any coffee before that appointment, so, yes, I was so jonesing then, too.
  3. My smile must be the truth, huh? 


Back to the story: I couldn’t help laughing at the seeming paradox of having an extremely uncommon neurological disorder, yet still experiencing all too common temptations. While it’s true most people won’t have to deal with saline pumps, IV stands, solumedrol-induced insomnia, or lack of reflexes, everyone will go through periods of sadness, worry, loss, self-doubt, rejection, and confusion. Darkness comes with the light; to get to dawn, you must go through dusk. The question isn’t in how to stop the tests, but how best to respond to them.

For me, I like laughing (apparently smiling?!), thanking God for His faithfulness, and coffee. I’ve got to have my coffee.


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