From comedian and one of my mental health advocate heroes, Maria Bamford’s book “Sure I’ll Join Your Cult”
Today I have this excerpt from a book I read, written by one of my favorite comedians and bad-ass mental health advocate Maria Bamford, reminding you that, no, people who die by suicide are not “cowards”. They didn’t “take the easy way out.”
I understand why people might think that. They’re sad that their friend is dead. Their son/daughter. Their brother/sister. Niece/nephew. Co worker. Whoever. They’re sad, and it’s easier to be angry than to feel the sadness.
"Anger is just grief's bodyguard." ~Liza Palmer
And I get it. I was angry. When my friend died of cancer -sadly I’ve had a few friends die of cancer-, I spent a couple years angry at her. For a lot of reasons. The circumstances surrounding her death. Her deliberate choice at the end. Or how she chose to isolate herself in the months leading up to it, and that I respected that choice and didn’t get more time with her.
Eventually I realized I was just sad. I missed my friend.
And I think that’s why people say that those who end their lives are cowards or “took the easy way out.” Because it’s easier than trying to understand the pain they were in. Easier than dealing with their own grief of missing that person. (Either that, or those people really are just buttholes. 🤷♂️)
Because they are not cowards. They are some of the bravest people I know.
We fight our broken brains every day. Getting up and finding another reason to go on. We try the therapy (for those that can afford it, as it’s not accessible to everyone) and we take the pills. We get tips and tricks from social media, or Google, and we find Facebook groups to join. Online communities of people who have been there, and have developed coping mechanism we haven’t thought of. We try to find little joys through out the day that motivate us. Maybe we stay alive by giving ourselves things to look forward to that will keep us here another day: A cousin, who is more like a brother and is visiting from out of state that summer. Your favorite band coming next year. A birthday dinner you don’t want to miss.
The fact that your mom will be crushed.
Or maybe you gotta stay alive because you know that no one on this earth will love and care for your chronically ill wife the way you do.
Whatever it may be that keeps you here.
And we we take those tools -the therapy (for those that have access to it), the friendships around you, the things to look forward, the online communities, the responsibilities you have, knowing the devastation it will cause loved ones. Whatever it is. We take those and we get up and go on for one more day.
It’s probably how Chester Bennington lasted as long as he did. It’s likely how Robin Williams made it to 63. Anthony Bourdain, Chris Cornell. How comedian and mental health advocate Maria Bamford is 55 and still going.
So today I celebrate all of us who are still here, finding our own reasons, “crushing and grinding” for as long as we can.
When you have chronic illness, a headache is rarely just a headache. What you think is a horse can oftentimes be a zebra. So when you have hydrocephalus like me, it can also be a shunt malfunction. In fact, that’s the first thing you should get checked out when you have hydrocephalus, a shunt in your head, persistent headaches and dizziness that won’t go away. “It’s the shunt, stupid” was the mantra drilled into our heads (apologies for the pun but come on, it was *right there*!) at national conferences.
Always. Check. The shunt. First.
Always check the shunt first, oh but also, “A headache could just be a headache. People with shunts can get ‘just a headache’ too.” Could just be a horse. So, y’know, figuring out when to go to the ER is clear as mud. 😐… 😐… 😐
Stress, tension, migraines can affect us too. Or in my case sudden changes in barometric pressure can cause headaches. And Colorado has those all the time! 50° swings in less than 24 hours are pretty common through out the year. And they will take me out! A day or two before they happen, I’m laid out in bed, sensitive to light and sounds. When they pass, I get better. It may or may not be shunt related, may or may not be related to the neuroma close to my shunt.
But the point is I still don’t panic about it.
Recently tho, I felt like I had a reason to panic.
I was standing in the bathroom, and suddenly I got dizzy. Not just any kind of dizzy. Not the kind of dizzy where you stand up and think, “Ok I did *that* too fast. 😵💫” No. A kind of dizzy that felt…familiar. A kind of dizzy that felt eerily recognizable to my soul.
The last time I felt it was summer 2013, when the 6 week old shunt they had just replaced my 17 year old shunt with failed. Feelings of vertigo followed by sensations of blacking out.
And it happened a couple more times that day. I spent the rest of the day in a small panic, knowing what I had to do, who I had to call the next day. And it was also a day spent mostly in the ER with Kischa because of some of her own pain she was experiencing that had been lasting a week or so.
So dealing with both, that was good times.
Shunt failure is nothing to mess around with, so the next day I called my doctor to have her send a referral for a shunt CT. She did so, without hesitation.
Meantime, nothing. No dizzy spells. Nothing. I get the CT, get results and…nothing. “No change in ventricles. No indication of shunt failure. “
……..k 🤷♂️
Life went on, ok for about a month. No dizzy spells, no headaches.
And then the headache came. No dizziness tho, so no worries, no panicking. “Maybe the weather. Maybe ‘just a headache.’ Maybe just cuz it’s Tuesday.”
But then it didn’t go away. Then the dizziness came.
But it wasn’t as frequent as when it was blatant shunt failure. And when I stopped to think about it for a second I also realized it wasn’t as bad. Oh it was new! It was not normal. But it wasn’t as severe as blatant shunt failure. So I didn’t panic.
I couldn’t just go to neurosurgery because US Healthcare 🙄, so I made an appointment with my doctor again and she agreed that the best course of action was an appointment with the neurosurgery department. “There’s a special number we can call when we feel like patients need to get into a specialty department right away, but aren’t quite severe enough to go to the ER.” So she called the number while I waited.
Neuro calls her back. The doc had enough experience to know what else it could be. Grateful for that, because the answer was something that didn’t even occur to me.
My doc wanted some blood work, mainly to look at my white blood cell count, to look for any signs of infection. She comes back and says, “Oh good, you haven’t had blood work done yet. Neuro wanted a few more tests.”
Ok. 😳
So rather than the one vile, they get 4.
I leave, with the promise that as soon she gets the results, she’ll interpret them and let me know what any results mean that might be out of range.
Meanwhile in a departure for me, I’m actually relatively calm about what the results might show. I know right, so weird! 🤣🤷♂️ (And shout out to the bestie who ChatGTP’d some stuff for me and helped me narrow it down before the doc commented on blood work results!) The normal CT a week earlier and the lack of frequency for the headaches and dizziness had me thinking it was likely not the shunt. That’s all I cared about it. No shunt surgery. All that mattered.
So it could be bad, but hey, I probably won’t need surgery. Let alone two surgeries in 6 weeks.
***Now’s a good time to mention, the last shunt revision really messed me up! Well, the second one in 6 weeks messed me up. The first one had me thinking, “Ok well, 17 years ain’t too bad. Whatev. Was a good run.🤷♂️” But the second surgery six weeks later?? The second surgery 6 weeks later, that one did a number on me! On my sense of safety. On my sense of mortality. On my anxiety! Everything leading up to that surgery -the dizziness, the pain, the black outs, the “lost weekend” I couldn’t remember. The doctor saying he was frankly surprised I hadn’t at least had a seizure as my ventricles filled up with fluid- it was all bad, recovery wasn’t great, and I was hyper aware of all my physical pain. Any little headache was not “just a headache” anymore. Led to a downward spiral in my already precarious mental health. That year culminated in me cementing my place in the Semicolon club.
So maybe someday I’ll write about that. But, y’know, probably not.
We now return you to your regularly scheduled blog****
So I wasn’t panicking. Mostly just wanted to know what was wrong.
And that’s why I’m always exhausted!!! I thought it was just because of Life™. 🤷♂️ Just life and everything that happens in life. Everything I gotta do as an adult with Spina Bifida. The appointments, the self care, all the things involved with chronic illness. And then my wife. All the things I do to care for my wife who has End Stage Kidney Disease and is on nightly Peritoneal (home) Dialysis. I’m the main caretaker. She helps where she physically can do things. My parents are a god send, and support us the best they can. But it’s a lot. I do a lot.
Results came in several hours later. With her comments. I took a deep breath in (I may have been panicking just a little bit when the moment of truth actually came and the results would tell me what’s been going on. 🤷♂️😇)
DRUMROLL PLEASE…. 🥁🥁🥁🥁
Severe anemia.
I am severely “iron deficient” anemic. Apparently there are several different types of anemia, one I think is even indicative of cancer! But mine, and the most common, is iron deficient anemia. Maybe related to my severe osteoporosis, maybe not.
So that’s why I’ve had dizzy spells. That’s why the world spins. That’s why I’ve had random headaches. And that’s just the 2 biggies that led me to seek a diagnosis. But hindsight being 20/20, it’s also likely why I have brittle nails and why the bathtub hair catcher has seemed just a little too full of hair for my taste! Never lost clumps of hair or anything, but anemia can cause thinning hair and hair breakage.
And the bruising! The bruising that seems to take forever to go away! And aren’t you glad I posted a picture of a 6 week old bruise that’s only now beginning to fade, and not of all the hair in the bathtub drain!
And I sorta just thought I’m always exhausted because everything is just a lot.
Turns out I’m doing Life™ with severe anemia. Ha! 🤷♂️
So. There ya go. Moosey is severely anemic. Add that to the list of stuff, along with Spina Bifida, secondary and tertiary conditions of SB, severe osteoporosis, and, I dunno, this hang nail that’s been bothering me for a few days. 😊 🤷♂️
So next up, an endoscopy and colonoscopy to look for a cause for the blood loss. Ulcers or polyps, respectively. Had a colonoscopy, my first, four years ago where they did find and remove 2 pre cancerous polyps. Get your colonoscopies, kids. I’m thinking more likely it’s an ulcer. I take prescription Omeprazole for reflux, have for years, and was told it can work to not only stop the reflux but also mask an ulcer.
I can’t get in for those procedures until April, 2 months away. Hopefully when that time comes, they’ll find something easily fixable. Guess we’ll see.
But hey, at least it’s not shunt failure. Stay tuned for updates after they stick cameras in me… 🤷♂️
What’s your experience been like with anemia, severe or otherwise? What helped? Pills? Infusions? Tell me your experiences.
From the moment we met in high school, I remember her kindness. And as a disabled kid who didn’t feel too good about himself, finding kind people was essential.
Over our high school years, her kind soul continued to shine through. She’d write me letters when I was in the hospital having yet another shunt revision. She’d call the hospital and talk to my mom to see how I was doing. She’d give the biggest hugs when I’d come back. Her smile and her laugh, the way she’d call me “Gabrielie”, watching her perform in “Fiddler” and “Flowers for Algernon” night after night.
A lotta good memories over those 4 years.
We were inseparable the summer after high school. She and I and a couple other friends, “thick as thieves” as they say. Spending random weekdays and many weekends together. Going to movies, going to the park, hanging out at each other’s homes. Terrified of what the future would bring. Wondering if we’d still keep in touch in college or whatever our plans were.
And we did. For a couple years in college, we still kept in touch. We wrote letters. I’d drive up to UNC and hang out. She’d come down here, and our little friend group would do something. We stayed close.
And then, well, and then we weren’t.
Years later tho, after growing and learning more about myself, understanding how wrong I was, I said some stuff, she said some stuff, and to no one’s surprise, she showed grace and forgiveness. We never regained what we had, never had that closeness again, but I’m grateful for what we did regain.
It was lovely to see updates on her boys on Facebook. She loved her boys and her husband. She was so proud of her sons. It was always “Paul Joshua did” this and “Isaiah completed” that.
She loved her husband, she loved her boys, and she loved God. Her faith was strong. She loved the Lord and inspired so many people with her faith. From Day One, 14 years old in high school, I could see her love of God and admired how she found great comfort in her faith.
My heart goes out to her husband, Wayne, to her boys, and to everyone who loves her and will miss her so much.
Kischa has her own memories of her dear friend. Singing in choir together, sitting together on the bus while sharing laughs on the way to various choir shows. And having Sunday service at a friend’s home, with Ruth’s dad giving the sermon. She will always carry those memories with her.
Thank you for being you. Thank you for the kindness, humor, laughter, and grace you always showed me.
Thank you for your example of Christ’s love.
May your family and friends find comfort in the fact that you are with Him.
I leave you now with this song. The summer we were “thick as thieves” she and another best friend of ours were hanging out at my house, all of us struggling with what the future held, and she had a surprise for us. A serenade of sorts. She had the music on cassette (it was 1994!) to two songs, each specific to each of us, and she sang this song to me. She had a beautiful singing voice, as anyone who knew her will tell you, and she sang Mariah Carey’s “Hero” to me. It was a reminder to believe in myself. A reminder to not be so hard on myself. That I can get through things. That I had already gotten through a lot in high school, so many surgeries, complications from those surgeries, whatever else, and that I could get through other things. I can be my own hero. She believed in me, and helped me believe in myself.
It meant a lot that day and, sitting here thinking about it, it still means a lot that she cared enough to try to help me believe in myself.
Thank you for that, my friend.
(Tis been a lifelong struggle. ButI’llnever forget that 30+ yearsago she cared enough to try ❤️)
I am so grateful we reconnected and I will miss you, but I will always have the memories. ❤️💔
Suzanna Ruth Simon, née Zal December 18, 1975 – December 31, 2025
Home from college, a small group of us celebrating her birthday at her mom’s house in 1994. She had the most beautiful, genuine smile. 😊
My Bleeding Ink 