After a long illness, my brother-in-law passed away this morning, August 20, 2018. Godspeed, Kenny.
“Why am I always sick?” That’s a question I used to ask myself a lot. Other people asked it as well: “Al, why are you always sick?”
I remember one time I was in the same room as my wife while she was on the phone. She was taking to her sister, who was talking about her husband (my brother-in-law), and their conversation went on for quite some time. Afterwards I said, “Wow, I hope you guys don’t talk about me all the time like that.” My wife said, “No, we just say that you seem to get sick a lot.”
When I was very sick in 2015-2016, I used to tell my doctors it felt like I had been “drugged.” When I could see that they couldn’t understand or believe that, I’d tell them that it felt the way you feel after surgery, groggy and woozy.
For the most of this year I’ve been eating very well, but yesterday I went to see a movie (Logan) and had some popcorn. Shortly after eating the popcorn I started to feel sick, and today I feel like I’ve been drugged.
This — as I have learned — is life with mast cell activation disease, known as MCAD or MCAS.
From this NY Times article: “But when it comes to the burden of disease,” he added, “some of the leading risk factors are not high intake of unhealthy foods, but low intake of healthy foods.”
As one example, I read in a book about food-related diseases that red meat isn’t necessarily bad for people, it’s just that people in the U.S. tend to eat red meat without eating anything healthy along with it.
A strange thing about the illness I’ve gone through is that I don’t have any memory of certain events.
For example — from what I can gather — during my worst time(s) I wrote this Collection of ScalaTest BDD examples using FunSpec tutorial, but I have no memory of writing it. I know that I wrote it because (a) it’s my writing style and (b) it’s on my website, but other than that, I have no recall of it. None. Zilch.
For a little while that bothered me, but now I look at it as something that’s interesting. I think it’s weird/amazing that I could write a tutorial and have no memory of writing it (or the process of researching it), but I guess that’s how the brain can work when things are screwed up. During the same time I also wrote this note to “buy some december at the grocery store,” so I know my brain was definitely going out to lunch at times.
I can see how this can be frustrating for people with chronic memory problems, but at the moment I look at it more as a mystery, like, “Huh, well, I wonder what else I did during that time?”
People who haven’t been seriously sick before have a different set of priorities than I do. I remember eight years when I went on a yoga retreat in Mexico, a young girl boasted that she had read one book a day while we were on retreat. I didn’t say anything to her, but I thought, “Well, I laid on the beach, swam in the ocean, walked through a cemetery, went off the grid and ate some funky food at some out of the way restaurants, drank tequila in the town square every night with the locals, and learned a little Spanish.”
Neither way is necessarily good or bad, just different.
“Though it does taste like pond scum, Spirulina has some great health-boosting qualities.”
As I’ve learned in the last two months, most doctors don’t know what mastocytosis or mast cell activation disease is.
I learned that the hard way, with over fifteen ER visits in the last three years, and having seen not only my primary care physician (“I wouldn’t know what to test for”), two endocrinologists, an allergist, a hematologist, three gastrointestinal specialists (one with a focus on the liver), and others I can’t remember, in addition to all of the ER doctors.
Last night was a rough night, and it made me think of the Joe Walsh song, Help Me Thru The Night. This morning when I was looking for that song I came across a song called, Help Me Make It Through The Night.
This version is performed by Willie Nelson, but it was originally written and performed by Kris Kristofferson. If Willie Nelson isn’t your cup of tea, here’s a link to a Norah Jones version of Help Me Make It Through The Night.