Starting a new thing, I hope. Here goes.
Starting a new thing, I hope. Here goes.
Things that should be gender-specific:
Things that should not be gender-specific:
….actually come to think of it, those first two things are probably an all-inclusive list. All else is unisex. Unigender. Pangender? Social awareness is hard.
PSA, MARKETING IDIOTS: WOMEN DO NOT NEED SPECIAL PINK TOOLBOXES FOR OUR DAINTY WOMEN HANDS. I have ALS but I can punch you in the jimmies just as well as a man can. For now. And when I can’t? I’ll have Danielle do it. And she can hit like a truck, man. You do not want this.
What does this have to do with ALS? Not much. I was looking at knee braces just now and they have ones “for women” that look exactly like the ones that are just “knee braces”. And they’re the same. Only pink. Sometimes? Yes, medical gear needs to be gender specific. But my knee is built like any dude’s knee. Well, originally, anyway, or I wouldn’t need a knee brace I suppose. And so this turned in to this post, which you have just wasted precious minutes of your life reading.
There’s a book called “Miss Peregrine’s Home for Peculiar Children”, which I love, and in the epilogue, it brilliantly describes how anything that changes you forever splits your life into two halves: Before and After.
Before, like anyone else, I had a lot of plans. I just bought a house. I had all the paint, and all the decorating ideas, and SUCH a garden planned in my head. My backyard is luxurious and I had many garden barbecue parties planned already. I had a spare room just for fostering kittens. My kitchen was a thing of beauty, I was planning amazing culinary ventures. This was going to be my forever home.
Before, my health was pretty good. I still had chronic headaches, but they didn’t really interfere with life much. I had lost a bunch of weight and was fitting into 32 inch jeans again – I felt healthy and cute, and was getting confident about my body. I wore size small shirts, and bought new clothes. I had energy, I was doing things and going out.
Before, work was reaching a comfortable zone. I had confidence in my ability to rise to whatever I was asked to do, and I saw a long career ahead. I was going to school to become an engineer and get promoted.
Before, I was comfortable in being single, I was self-reliant and independent. I could do anything by myself.
Before, I never really thought of myself as particularly important or special. I had people in my life I adored, but never felt worthy of their adoration in return.
Before, I never thought about death much. I knew academically that I agreed with assisted dying, I knew that getting paperwork done way in advance was important. I knew I should have an advance directive. I knew it happened to everyone, I knew on a high level what happens and that there’s a ton of complication and high emotion when it occurs.
A year ago today, I was in the middle of the Medical Folderol and had recently discovered I couldn’t stand on my toes anymore. A year ago today, I sat in Dr. Goslin’s office and stared at her hands while she told me that I have ALS.
After, I use leg braces, knee braces, and a cane to help me walk. When I walk down the hallways at work, I usually don’t bring the cane, but walk with one hand brushing against the wall the whole time. My social worker called it “wall surfing”. Walking a block exhausts me. I carried five empty boxes up the stairs last week, setting them on the steps, walk up a couple of steps, pick up the boxes and put them a few steps higher, repeat. I was sweating and out of breath by the time I was done. Walking the mile to the bus stop is out of the question. I carpool with an awesome coworker in his big red truck, and I know there’s going to be a time soon that I can no longer physically get in his truck. I can’t manage the one step up into my house, I have to brace my hands on the doorpost and pull myself in and up.
After, every crowded room is a minefield. Who is going to knock me over? I carefully watch my entire perimeter for unexpected people, or someone in front of me stopping suddenly. Every social interaction is a potential disaster, far and above my usual social awkwardness. There’s no more casually walking around, I have to be keenly aware of movement around me so that I don’t get tripped up or knocked down.
After, everything is a matter of energy budgeting. I wake up already exhausted, and everything is so much harder. My muscles have to work overtime to compensate for the ones that suck. There’s no more “just a quick trip down to the store room” at work. I have to plan that effort. Every little thing sends me in to a sweat. It’s super sexy. There’s no more getting a wild hair and deep cleaning the bathroom. Some weeks the bathroom doesn’t get cleaned at all.
After, my weight ballooned back up. Stress eating. Bleh. But the medical professionals encourage you to gain weight and keep it, with ALS. Heavier patients tend to have better prognoses. And you need that fat, for when you’re not able to eat anymore, like a whale living off its blubber. “Don’t go crazy, you don’t want to need a bariatric chair or anything, but..be nice to yourself and eat what you want.” Cause…fuck it, I’m dying.
After, I’m working hard to sell my house that I love and fought for because it’s becoming a physical impossibility to live there.
After, I am intimately aware of the legality and the complications of death. I’ve met lawyers and social workers and it’s more complicated the further you go. There’s nothing simple about the bureaucracy of death.
After, I know damn well how I feel about assisted dying. And I intend to exercise that right, if it comes to that, and it infuriates me that it’s not an option for Alzheimer’s patients, too. And an option everywhere. Brits should not have to take a permanent vacation to Switzerland to die in a strange hotel-like room. For a lot of money.
After, I am so, so, so blown away – daily! – by how much I seem to matter to people. By the sheer quantity of people who have stepped up to do something, even something small, to make my life a little brighter, simply because it was in their power to do so. And they love me. I thought I was insignificant, someone nice to be around, but certainly not someone who mattered much, and I’ve been told and shown how wrong I was. Constantly. In surprising ways.
After, I know how much I have impacted lives around me. I know how their lives impact mine. I know how important a seemingly insignificant gesture can become, years later. How memories define you, and can change your life without you realizing it. How important it is to reach out to people, all the time, because you never know who will show back up and be a key player when drama unfolds.
After, I know my strength. I know my calm and my pragmatism were not just theoreticals in my head, they are actual and they are real, and they will help me get through this. I know I have the grace and the quiet power that can see me through everything to come, because they have seen me through this far. I know my humor and my compassion will go far and help me survive for as long as I can.
After, I know that I’m seriously a morbid bitch. My dark sense of humor prevailed, and I’m finding things funny that would have appalled me had they been about anyone else. I am in love with a web series called Ask a Mortician, fascinated by the machinations of how we deal with death. I seriously believe we have done ourselves a terrible injury by trying so hard in the last hundred years to pretend that death doesn’t exist, it’s something that happens to other people. Because sometimes, it happens to you. And we, as a society, have forgotten how to deal with that.
After, I am intimate with the kindness of strangers. It never ceases to take my breath away, and it is so life-affirming when a total stranger gives me a kind word, encouragement. When total strangers sent me money to help. When a woman I’ve never seen before or will ever see again looks me sincerely in the eyes and says words of love and strength. And means them. It’s one thing to be told, “Good luck” or “have a nice day”. It’s another to feel someone reach out with their soul and tell you that they wish you all the best, and to keep up my optimism because it will see me through.
After, a year later, I reread my blog and see myself shift in little ways, and discover opinions I never realized I had. I see myself think about hard things, make difficult decisions, and become stronger than I ever thought I’d be. And I know that I’ll be okay.
Before, I didn’t know if I would ever have had strength and support to see me through After. After, I know love and support and strength and grace I would never have discovered Before.
After, I know that by the amazing and profound love of the people in my orbit, I’m going to be fucking FANTASTIC. And I can’t wait to see what the next year shows me.
Soooooo in the days, months, years ahead, there’s gonna be a lot of uncomfortable stuff. Things you don’t talk about in polite company. But the point of this blog is to document EVERYTHING, and well, I know some people are curious about this sort of thing. SO let me educate you.
If talking about shark week, Vampire tea parties, communists in the funhouse, girl flu, a red light special downtown, a crime scene in your pants, or rebooting the ovarian operating system makes you feel uncomfortable or squicky? Then now’s your time to bail. Here’s a picture of kittens to wipe your mind clear.
Still with me? Okay.
While contemplating everything after my diagnosis, envisioning my future, thinking about all the practicalities, it occurred to me. What the hell am I going to do about my period? I imagine MOST people with ALS have already gone through menopause so it might not be a common question. But it’s just one more damned thing to deal with, that I am not going to be able to take care of myself. And some nurse dealing with that? Man, why. So I brought it up with Doctor Goslin, and she said when the time came, I could talk to my primary about options.
I decided the time had come.
I wanted to start the process now, when I could still deal with it under my own power and remain in complete control. And I wanted to give myself time to adjust to any side effects NOW, to allow enough time to go by to make sure that I had it under control before life was beyond my own control. I decided to go to Planned Parenthood instead of my primary, because they’d have all of the information about ALL of the methods. I wanted options and informed decisions. I did a lot of research on my own, and I really liked the idea of the implant, but that wasn’t a guaranteed stop to menstruation. So I went with an open mind.
It took me a little bit to find it, but it was made easier by the honest to god protest happening outside. Fetus posters and everything. They didn’t fuck with me though, they just stood across the street singing hymns. There was a sign in the upstairs window that said, “Hello protesters! Donors have agreed to give $37 for every one of you that shows up today! Thank you for coming!”
Mannnnnnnnn it took FOREVER. I was half an hour early to my appointment and was taken back 45 minutes after my appointment time. I talked a little bit about it to the aide, she gave me some preliminary information, asked if I wanted AIDS and siphyllis/gonorrhea testing, was I being abused, had I ever been pressured into sex, did I feel safe at home? no, no, no and yes, thank you, I’m fine. She also reminded me it had been 4 years since I’ve had That Thing That Really Sucks and they recommend it every three. Would I like to take care of that today. BOOOOOOOOOOOOOOOkay FINE.
So the clinician came in and we had a long chat about all of the options. Half of them were out because I have a history of headaches and migraines which estrogen would exacerbate. The implant was not recommended because not only is it NOT a guaranteed end to menstruation, the effects vary wildly. Some women get heavier periods. Some women get spotting, some have irregular and unpredictable flows. So that was out. Which is a SHAME because I’d really like to only have to think about this once every three years, and the idea of a little plastic matchstick under my skin on my arm is creepycool.
We decided on depo-provera. It’s a shot in the arm, once every three months. It’s a hormone called progestin, a slow release that prevents ovulation. She told me that she has another woman who comes in regularly with her developmentally disabled daughter, and the daughter gets the shot as a matter of hygiene so it’s not at all an unheard of application. She had me take a routine pregnancy test first. Just cause. Even though it would be a second-in-history MIRACLE if I were. We did the Thing That Really Sucks, and then she stabbed me in the arm with a needle and I was sent on my way.
My arm’s a little sore. I was told I might gain weight, so maybe just be a little careful about what I eat, and depo CAN cause bone brittleness (yay?) so take calcium. I’ll see how this goes from here. When I left, the protesters were gone and it started raining BUCKETS as I walked to the train stop. A really amazingly nice woman shared her umbrella with me, because of course I didn’t have one. This is Portland man, we don’t believe in umbrellas (SPOILER: YES WE TOTALLY DO. It’s just that it doesn’t usually RAIN here, just this nagging persistent drizzle that only barely counts as rain and you don’t need an umbrella for that you sissy. But when a half block walk had me soaked to the skin? Yes, yes I WOULD like an umbrella. Thank you, lovely lady.)
We will see how this goes. I’ll keep you updated. And now you have an answer to a question you might have been afraid to ask, or didn’t occur to you. So when someone asks, what do women with ALS do about their periods? Now you totally know.
What does this blog have that the other ALS blogs don’t?
Swears. Lots and lots of swears.
((Grawlix is the word for symbols used in place of swearing, like when a character says “@@#(*&$@%^!!!”))
On April 1st, 2014 I was officially diagnosed with ALS.
Unfunniest. April Fools. Ever.
The diagnosis in a nutshell, as I quoted back to my neurologist, was “definitely a motor neuron disease, and probably ALS.” 90% probable. I have some weirdness in my presentation of the disease, but I’ll talk about that later. Basically I’m really young to have it – I was 37 when I first noticed symptoms. It’s also progressing very, very slowly.
FOR WHICH I AM GRATEFUL, UNIVERSE, THIS IS NOT A CALL TO CHANGE THAT.
It’s really harsh, to say the least, to be told 10 days before your 39th birthday that you have a terminal disease. Which you can do precisely jack shit about, except watch yourself deteriorate into infantile helplessness with a perfectly intact mind, and prepare to die. Whee? So my mind is in a million places, and I realize that it would probably be good to start documenting things. If only to get them out of my head and to have some record of my disease’s progression.
What I want this site to be is a safe place for me to vent. A diary of disasters. Details that might have been missed if I didn’t have some place to put them. A place to tell future me that it didn’t always suck. An easy way for friends and family to check in on me.
It would be nice if this also becomes a place for people to find out about this shit. Maybe someone newly diagnosed who just wants to see what they can expect. Maybe some encouragement. Someone close to someone newly diagnosed who wants a glimpse into that world. Someone out there who’s got something kinda weird happening and is looking around on the web for someone whose symptoms match.
What it WON’T be is a medical diagnosis. It won’t be an authority. I can’t even pretend to tell you I’m representative of anyone else going through ALS; I’m a pretty odd duck to begin with, and my presentation is a little atypical, like I said; I’d be surprised if someone out there is exactly this way. But maybe you’ll find pieces that are accurate for some people, some of the time. It won’t be me telling you what it is like for people who have ALS – it’s me telling you what it is like for ME to have ALS.
SPOILER ALERT : IT IS PRETTY SHITTY.
I’m a pretty goddamned optimistic person, and I’ll find ways to irritate you with that, I’m sure. I have always believed to my core that everything’s going to be okay, somehow, and while I’m kiiiiiinda finding flaws in that, right about now, I’m still certain that I’m going to BE okay. Even if my “okay” is not what “okay” meant to me a year ago. I have a pretty dark sense of humor about all of this, because fuck it, if I didn’t I’d go crazy I think. So while there will be the occasional OH MY GOD WHY ME THIS IS TERRIBLE there’s probably not going to be a lot of that. There will be swearing though. Lots of swearing. Even in the happy bits. Especially the happy bits.
Wow. I’m rambling. This was supposed to be a short and sweet intro.
The moral of the story is Hi, I have ALS, you’re welcome to read about me trying to figure this shit out, but I’m doing this for me, you’re just along for the ride. Buckle up, fuckers.
The moral of the story is ALS: Fuck This Shit.