Home Owned

For the longest time, I never thought I’d want to own a house. It seemed like a lot of work, and a lot of money, for little reward. I got married, and the idea of owning a house didn’t seem so bad, but still way more work and money than I ever wanted to put in to it. The marriage ended, and I had a three bedroom rental house to myself, and..I liked it. I could put whatever I wanted, wherever I wanted. I could cut out the place and make it my own.


I could paint, sure, but..it still belonged to someone else, and the yard was the size of a postage stamp. I wanted a garden. Fruit trees. A yard I could sit in the shade in, and read books. Build a catio, hang out with my cats while I tended the garden. Suddenly I could see myself owning my own house. So I did some math, and some future projecting, and I applied for preapproval, and got accepted. So suddenly I was house hunting. That took FOREVER. And when I finally found the house I wanted, the house I could see myself living in for the foreseeable future, it turned into a short-sale fiasco that took six months of babysitting for signatures and phone calls and a lot of work from the most excellent real estate broker in Portland. (Seriously, if you live here and are in the market, hit me up for her contact info. I love her. She’ll do amazing things for you.)

But finally, finally finally the house was mine. I took possession of it in June of last year. It is, of course, a traditional two story house. Because I don’t like ranch style houses.

I’d only been noticing a problem for about 7 months by then, and they were so, so minor. A little hitch in my walk by the time I got the keys. Certainly nothing to freak out about. I’d started the gamut of doctor appointments maybe two weeks before I got the keys, and over the course of the initial appointments, when I found out that it might be a hip problem needing surgery, I made mental plans of setting up a futon downstairs while I recovered from surgery, but went ahead with all of the flooring and painting that needed doing. And time went by, and I worked on the house, and the limp got a bit worse, and it went from me not having a problem at all with stairs to me using the hand rail more often than not to now, where I need the hand rail to go up and can not carry anything down the stairs requiring two hands.

So now, here I am, in a house I fought for, that I can’t stay in. The layout of it is such that it is ENTIRELY unpractical to think I can still live here when it becomes necessary to use a wheelchair. Even with a stair lift, the doorways are too narrow and everything – my office, the library, my bedroom – is upstairs and there’s no practical place to have a bedroom downstairs. And no way at all to modify the half-bath into a full with a roll-in shower, certainly.

I’m going to have to sell this house. There’s absolutely no question.

The question I’m dealing with now, though, is this: Do I sell and just rent a place for as long as I can live alone? Or do I sell it and buy a single story, smaller house? And if I buy a single story, when? Should I wait for the last minute, until I just can’t even do the stairs anymore? I mean I haven’t even owned this house for a YEAR yet. Or do I start working on that NOW, so that I can buy a house and make it my own while I am still physically able? I was advised to make the necessary renovations as soon as possible.

Just, FUCK.

Fuck fuck fuck.

I don’t want to leave this house. I love it. It’s got its problems, but I’ve got plans. I JUST got my office done where I like it – and since ‘where I like it’ involves…lemme count here…26 wall shelves full of toys, 3 bookcases full of binders and books and toys, and a zillion plastic drawers with all of my computer parts and crafty shit..that was a HELL of a lot of doing. And the ceiling slopes from 11 feet on one end to 7 on the other, and the 11 foot wall is FULL of shelves with toys/models/ stuff. It took me a lot of hours on a 7 foot ladder to get all that up there. And I don’t think I could do that again. I have a ceiling fan that needs an extension put on so the blades can turn without hitting the slope of the ceiling, and I’m not allowed, says my brother, to climb up there myself and do it. The thought of having to pull all of that down again, when I only just fucking got it UP, actually sends me into a precursor of a panic attack. IT TOOK HOURS. It FINALLY feels like I live in here. And to have to pull it all apart and move it again.


But the alternative is to wait too long. And then someone else will have to pull it down for me. And then put it back up in a new house. Or I move in to an apartment, and it probably does not get put back up at all. And I spend the rest of my shortened life living somewhere that doesn’t feel like it’s mine.

So what do I do?

Do I abandon the house I wanted, and finish what I absolutely must in order to sell the place? And sooner than later? Leaving the vision I had of this place unfinished?

Do I go through the whole rigmarole of home searching again? It was SO MUCH FUCKING WORK. SO. SO. MUCH.

And then holy FUCK the whole MOVING thing. I HATE packing. At least this time, hiring movers isn’t even a question, but it cost me a thousand goddamned dollars to do it. I don’t have a thousand dollars to move. I don’t feel like I have the energy to pack my shit.

And then if I buy a new house, then I have to renovate the fucking place, sooner than later.

I just wanted a place of my own that looked how I wanted it to look, with honeycrisp apple trees in the back yard, a nice big kitchen where I could turn those apples in to pies in, and a quiet space to live alone. And now I can’t have that. But do I give it up now or later? Do I wait for it to become an issue? Or do I preemptively resolve long term issues now while I have the strength and the ability? How long do I let life happen to me before I do something about this?

Why couldn’t I have been diagnosed BEFORE I bought the place, dammit?!


I have a lot of hard choices to make, and there’s a lot of work ahead of me regardless. I suppose to real question, is do I want to have a hand in that work and a choice in how things turn out, or do I wait too long to be able to do this myself and have those choices made FOR me. I’m not too hot on other people deciding my future for me. It’s bad enough this goddamned disease is telling me what’s going to be allowed (not that I’m listening), but to leave everything I DO have a choice about, up to loved ones when it’s too late for me to have a say is pretty much bullshit.

I’ve never just allowed life to happen to me, I’m not about to start now.

But this is a really huge, expensive, work-intensive decision. I have some time, but not a lot, to think about it. At least I’ve already made a profit on the house – it was appraised at more than I locked the offer in. So hooray for that. I guess my first step is to call my realtor and ask for her advice.

But first, apparently, I’m going to whine on the internet about it.

I Did a Thing

Reddit hosts sessions with celebrities, where you can ask them literally anything. They did one with the CEO of the company I work for, they did one with Jackson Galaxy of My Cat From Hell, allll kinds of people. But really anyone can do one, based on a life experience (I climbed Mt. Everest) or who you are/what you do for a living (I work in cryogenics) that makes you special. A good friend’s wife is recently going off of her epilepsy meds after 22 years; she hosted a session. It inspired me to do one of my own, so I invited total strangers to ask me anything:

IamA Newly Diagnosed Person with Lou Gehrig’s Disease. AMA! from IAmA

Overall, I had some really great questions, so so so much encouragement, and I learned about some new research. It gave me the courage to go through with making this blog public after all.

Care and Feeding of Your Center Circle

This one’s important. It was hard for me to originally write this up. You can skip everything else if you want, I’m pretty boring, but if you feel like you want to support me through this shit, then this is what I need you to know.  The tl;dr is at the end in bold, you can skip to there if you want to.

I’m a big fan of optimism. I am a very (obnoxiously) optimistic person. There is, however, a thin line between optimism and denial, and I skirt that line every day. In order to do a proper advance directive, I need to dip my toes in the other pool. The one that says I am going to end up in a wheelchair and then hospice and then I’m going to die. I need to think about how I want to handle all of those things from a practical standpoint, and at what point do I really think I want to be done with it? What is my timeline? And when things get bad, who can I rely on? Who am I going to burden with taking care of what? And in order to do all of this, I need to be allowed to be sad. I need to be allowed to really, truly feel the panic of knowing I’m going to die. To know that I’m going to be trapped in a meat shell with a clear mind. And that fucking SUCKS. I need to deal with that grief and mourn who I will never be allowed to be, in order to get past that and make rational decisions.

There’s gonna be a lot of crying. And anger. And despair. And I need to be allowed to do that, on my own, without interference. I know that you want – NEED – to be here for me. But I hate being a burden and I’m really bad about reaching out for help when I need it. I don’t like seeing people I care about in distress, especially when I’m the cause of it – whether or not I can help being the cause. Believe me, I’d love to not have anyone have to worry about this. I really, really would.  And part of my inability/unwillingness to reach out for help is my stupid avoidant bullshit. Because I don’t want to cause drama, I am allergic to awkward situations, and even worse is when I reach out for help and don’t get what I need.

So let me help you out, and help myself by doing so, and maybe help some other people going through serious shit and need support. I’m going to give you a phrase. Use it liberally.

“I’m really sorry that this is happening. It must be really difficult.”

That’s it. Or some close variant. Acknowledge my suffering, and empathize. I don’t need “everything’s going to be okay!” or “it could be worse!” or “hopefully it won’t actually come to that!” Sometimes, often times , I don’t need an uplift. I just need someone to know that it hurts, and it’s hard. That’s all. I don’t need you to solve the problem for me. I don’t need to be rescued. I don’t need to be cheered up or distracted. When I want those things, I will ask for that specifically. If I reach out, if I say, “I’m having a really hard time right now and I need support for a bit,” I just want you to listen to me for a little bit and then say “I’m really sorry that this is happening. It must be really difficult.” If I say, “I’m having a really shitty time, I need a happy distraction,” THAT is the time to pull out the anime and kittens or whatever. If I trust you enough to tell you I need you there for me, I just need you to hear me, and agree that it is shitty. 

Also? KNOW that I am shit at reaching out. Maybe check up on me once in awhile. Just “hey, how are you holding up?” once in awhile. I’ll tell you what I feel like telling you. And this is important, so I’m putting it in a line all to itself:

Don’t fucking ride my case if I tell you after the fact that I had a hard time because I didn’t call you. 

This is a very important one. Because it will sincerely piss me off. Chiding me for failing to call you feels like you’re vilifying me for my own suffering. Don’t do this to me ever. Just tell me that option is available. “If it happens again and you need someone, I’m available.” not “You should have called me.” I mention this specifically because I kind of got in a fight with a friend over this, and it caused me to be pretty unkind to him. Disclaimer: I GET it, that’s how he is, he is like me and uses goofy kid words, and jokes to make a serious thing lighter. It’s why we’re the best of friends and I love him a lot. (I do love you. But holy shit this was the exact wrong thing to say at that precise moment.) But when your best friend – who is dealing with some serious, maybe life-threatening shit – tells you that she had a really rough week last week and she’s kind of in a weird headspace, this is NOT how to respond:

“Erg. No good! Why didn’t you call me! I mean, I know I can’t help balance the chemicals in your body out, but I could have given you a shoulder and some distraction! You were a naughty sad-face!”

Naughty. Motherfucking. Sad-face.

I didn’t ASK for a shoulder because I didn’t WANT one. I KNEW that it was chemical depression, that week, because I was on a new medication and it was seriously fucking with me. And when the real crying happens, it needs to be PRIVATE and PERSONAL so that I allow myself to just BE without worrying about how I’m distressing someone else. I did not WANT a distraction. I would have asked for one. And unfortunately, I’m probably going to be LESS likely to call on him, because he treated me like a fucking three year old when I said I was sad. Like I’m not able enough to handle my own shit, I have to have adult supervision. An adult that chides me with toddler words.  He also threatened to start randomly coming over to check on me if I didn’t reach out more.

…Don’t ever do that to me. Even when things are going great. I fucking HATE surprise social situations. Being an introvert AND an avoidant personality makes me allergic to surprise social situations. I will be gracious to your face when you show up, and hate you a little bit while you’re here, and be very, very resentful when you leave. Also so much less likely to call on you when I do need to reach out to someone. I promise you that it would NOT go over well. Because it never has.

I have been told that I should reach out and call because the thought of me crying my face off by myself is a depressing thought. Which is a really sweet sentiment, I get that you are concerned about me , but that statement makes the whole thing about YOU, and reaching out when I’m like that may be impossible and probably counterproductive. I can not be honest and open with my own feelings when I know I have a witness. I just can’t. I can sort out for myself what the fuck I’m feeling and then express that to you later, but when I am experiencing them for the first time, I need to do it privately. Maybe it hurts you to think that I was suffering alone (again, this isn’t really about me, it’s about you – and it feels like you’re using it against me as emotional blackmail). And when I apologize for making you really sad and uncomfortable with my conversation, don’t tell me “not hanging out with you and feeling like you are having to deal with everything on your own makes me even more sad and uncomfortable”.

Because sometimes it’s not about you.

In fact, this is NOT about you. At all. This is about me. Center motherfucking circle.

I need to be free to not give a shit that you’re unhappy that I don’t reach out when I’m unhappy. Because if I feel like I need to be alone in my unhappy, then I will BE alone. If I feel like I need a voice, I will call you. And if I don’t want to talk, I won’t. Because it is all. About. Me. Don’t make me feel like I have to alter MY behavior when I’m sad in order to make YOU feel better. I really fucking DON’T. I am allowed to be sad, and cry until I throw up, alone in my room. In the dark. And not call you. I probably wouldn’t be able to make myself understood through the crying, for one. And then on some level, I’m going to feel obligated to pull myself together a little bit because there’s someone else around, which interrupts my grief and makes it less effective catharsis. I need to be allowed to have my mourning alone. When I want to NOT be grieving, when I want to be happier or comforted or distracted, THEN I will call you. But sometimes? A bitch has just got to get her sobs on. It’s part of the whole thing. And the spectacular way that I am psychologically broken means that I need you to back the fuck off and let me do it privately.

I know this is hard for people that care about me. And you have every right to your reactions and your suffering. And I want you to be able to tell me about them without feeling like you’re burdening me about something that’s happening to ME in the first place. I care about you very much and I want to be able to tell you it’s going to be alright, one way or another, because it really is. I promise it’s going to be okay.

But, see, if you are center circle – REGARDLESS of the severity of the problem – and you tell me you just need to talk, I will listen. And I will not make any kind of demands for your time and attention, even if I think – even if I KNOW – you’d be better off for it. I will remind you that I am available if you need me, and say “I’m sorry that this sucks for you too. It must be really frustrating.”

Because that’s what you’re supposed to do.


It doesn’t hurt to check up on me once in awhile. I have a hard time reaching out.

Don’t chastise me if I don’t reach out when I have a bad night. I don’t necessarily want or even need someone every time.

I know you’re there if I need you. If you feel I need the reminder when I tell you I’m having a hard time, remind me. Don’t fucking mandate it.

DO NOT threaten to just dropping by to check on me unannounced if I don’t start reaching out. I don’t need a goddamned babysitter and I WILL resent you for it.

I will ask for distraction if I need it. Encouragement, if I need it.

Otherwise, “I’m sorry this is happening” is all you need to say.

I can’t control this situation. I can’t control what is happening to me. I can’t control your reactions and your feelings. I can only own how I react and deal with all of these things, and I’m trying to figure all of that out. I’m looking for a therapist for some professional help with this, too, because I don’t have those coping tools. I can’t predict how I’ll react to any given thing. This shit didn’t come with a manual. 

And neither did I, which is why I am telling you all of this.

The Silk Circle Theory vs Sympathy Points

Okay, the first thing I need you to do is go read this:


It’s important enough that it lives in my sidebar forever and for all time. I wish this was mandatory training in school when we are children. It would have saved me from accidentally being an asshole and inadvertently causing grief for those I love when they’re having a hard time. The center circle is the Sun, the outer rings are the planets; the closer they are to you, the tighter they’re pulled in to your drama orbit. You radiate pain and complaint, and they absorb it in the name of love and comfort. The Silk Circle theory takes the phrase “it’s not about you” and expands it to include a very simple two-rule set of mandatory behavior. Comfort in, dump out. The end.

I have taken “CENTER CIRCLE, BITCHES” to be kind of a mantra. It’s as much a reminder to the people around me that I need support, not drama, as it is a reminder to myself that it’s okay to be selfish about some things. I do not *have* to consider the feelings of other people when writing up my advance directive. I do not HAVE to be shy about what I honestly want on my bucket list. I do not have to apologize for being the bearer of bad news when people ask me if I’ve figured out what the limping is about yet.

I do not have to participate in my caregivers conversations involving delegating responsibilities. My social worker actually said that it’s best if I’m NOT involved. Just…work that shit out behind the scenes, and I will rely on you as a whole that it is getting done. Because I appointed you as caregiver. Because I trust you.

As center circle, though, I need to be cautious that I don’t burn out the bigger rings. The diagnosis is new. I have some leeway. But I am absolutely NOT allowed to make them miserable by complaining non-stop and insisting that life is All Vashti, All the Time. There are other channels besides ALS SUCKS ASS. The channels that made people tune in to me in the first place.

In addition to the Silk Circle, there are Sympathy Points. I’ve had this belief for more years than I know, it’s something that’s always been true and eventually I figured it out in words. Sympathy Points are a crucial part of any crisis, too. They work like this:

You get ten.

Each instance is one event. One illness, one accident, one breakup, one lost job, one stupid mistake, one whatever it is that puts you in center circle. One instance of you totally losing your shit and you need me to help put you back together. And for each of these ten instances, you have everything that I am capable of giving to you for help. Ten instances where I will give you my absolute sympathy. I will do my UTMOST to help you and fix your problem. Ten instances of me taking the bus to the hospital to sleep in a really uncomfortable plastic chair in your room with a watch timer set to go off so that I wake up to press your morphine button for you so that you can sleep without pain. Ten instances of 2AM phone calls in tears because you can’t believe he left you and I will listen to you even though I have to be up at 5 for a very important presentation at work the next day. Ten emergency showings-up to your house this weekend because you suddenly got evicted and you need to move your shit, like, NOW. Ten instances of me loaning you the content of my savings account because you can’t make your rent because you were sick too often this paycheck.

Sympathy points regenerate, over time. Slowly. You might spend more than ten over our relationship. But if you use them all too fast? Then they’re gone forever. Once they run out, you never get another one. That means I don’t loan you money. I don’t show up at your house with cupcakes and cartoons because she just left you. I don’t take the bus two hours out to your place after work to watch your kid because your babysitter bailed on you. I won’t go out of my way for you at all. Instead, I will pat your back sympathetically and tell you I’m sorry that this is happening to you.

The end.

Because running out of sympathy points means you’re a fucking trauma queen.

Ten is a LOT. And to have ten crises in a short time is very, very hard to do; it’s more likely that you’re not having ten legitimate crises; you’re probably overreacting, or creating the drama for the sake of the drama. Or you just have a really, really shitty outlook on life and take everything as the worst case scenario. Either way, that means you’re toxic. And that means I do not need you in my life.

As center circle, it is my duty to not burn through my sympathy points. This is, as a matter of fact, all about me, but I must be careful to not burn out my support structure. I have an advantage of being automatically inclined to optimism, and I have a buoyant personality by nature. I can’t NOT pay attention to how my actions are affecting other people. On your fifth or sixth time around being Center Circle, you ought to look around and make sure your circles aren’t drawn around yourself for no reason. Make sure you’re not the boy who cried Wolf, make sure you actually need some help instead of just wanting attention, or eventually you’ll discover you’re out of sympathy points and find that there’s no one who gives a shit. Alone in your center circle.

I need to be careful to not kick my planets out of orbit. I need those guys. They’ll forgive the first couple of solar flares, but after awhile, I’ll find only cosmic dust.

All of My Stuff is Shit Someone’s Going to Have to Deal With

I am a very ‘stuff’ intensive person.

It’s not hoarders level, no, not quite yet, everything has a place and a reason for the most part. Except the boxes of VHS tapes out in the garage I need to go through and convert some of it to digital. The rest of those are just random comedy and shit I’ve taped over the years because I have an insane need when I like something to obsessively collect ALL OF IT. But there’s some important stuff on some of them. My 6th grade school play, videos of cast performances of Rocky Horror Picture Show. You know. Blackmail material. Important stuff. Other than that, though, I’ve got like 7 boxes of VHS tapes to toss. When I get around to sorting through it all.

Tthere’s been a lot of sorting through stuff already, but it could easily be a full time job if I let it.

A terminal diagnosis gives you a different perspective on a lot of things, it goes without saying. But one of the perspective changes that’s hit me hardest, one of the most concrete OH HEY YOU ARE REALLY GOING TO BE DEAD slaps to the face is the knowledge that someday, someone is going to have to go through all of my shit and decide what’s worth keeping.

…Not a lot.

I’ve been casting a more critical eye on my belongings lately. WHY do I have that thing. WHY do I keep those papers. What is someone going to think of when they have to sort through this box of random crafty shit. Are they even going to bother? Am I REALLY going to use this notebook of blank paper with water damage on the edges? Is anyone else going to want to? Am I going to actually make something out of these little bottles or is it taking up space? Having a suddenly finite time to get shit done forces you to narrow your perspective and see your belongings with an outsider’s eye.

So I’ve been getting rid of a lot of things, but I have to be careful that it doesn’t turn into a fatalistic FUCK IT THROW EVERYTHING AWAY IT’S ALL MEANINGLESS. Just…”This is a drawing I did in 6th grade. No one is going to care about this but me. Hell, *I* barely care about this, I haven’t even looked at it in like 20 years.” So I scan it and toss it, or just toss it. “This is a skirt I’ve meant to mend, but I know damn well I’m never gonna.” Toss. “This is a stack of books I’ll never read again.” Sell. “This is a dirty plushie that has some small significance to me but has been languishing in this box for sentimental reasons for like, ten years.” Toss.

This is all stuff I should have been thinking about, all along. A critical eye that everyone should ALWAYS have when keeping things around. I’ve collected a lot of random things with no lasting importance in the grand scheme of things, and I’ve carried them around with me for a lot of years, without ever looking at them. It’s been pretty interesting, viewing my stuff as an outside observer. “Why the FUCK did she have, like, a MILLION blank notebooks?!” “What the hell is with this little jar of cat whiskers.” “Forget the cat whiskers, why does she have a glass baby bottle full of burnt out matches?!”


I have a lot of stuff I’ve been collecting for creepy décor. Probably won’t make it to BE décor now, but maybe I can find someone who would appreciate it. I’ve been making an effort to go through all of this stuff as time permits NOW . Not only so that when I die, someone else doesn’t have to, but so that when I inevitably have to sell this house and move someplace wheelchair accessible, I don’t have to deal with it THEN either. Thinking of likely adoptees for some of this stuff, and realizing with more than a bit of sadness that some of my most awesome things mean absolutely nothing to anyone else, and will be trash.

And then there’s the dozen photo albums full of stickers. It’s an awesome and an embarrassing burden.

At what point do I stop collecting things? My collection still makes me happy, and so I still want to add to it, but there’s a gut-wrenching feeling, knowing that it’s…kinda pointless and is just going to be something someone has to deal with when I am dead. Realistically? That’s true of everything, and always HAS been. Everything you own, unless you deal with it, someone else is going to have to, when you’re dead. It puts a very somber note to material possessions.

Which does not mean I’m going to throw or give everything away while I am still alive. I like my stuff. It’s just that I’m developing a keener eye towards what is actually useless, even from an entertainment perspective. I have birthday cards from when I was a kid. Am I ever going to look at them again? No. But it feels so awful to just chuck them in the recycling bin. Those are my memories. But they’re just mine, and no one else cares, and they’re taking up space and eventually they will take up someone else’s time, needlessly.

Some days I care more about that than others.

Some days I feel like giving away everything that I can while I’m alive, to know that it was accepted and appreciated by the people I wanted to have it the most. Regardless, I want to ask people to be honest with me when I ask them, “would you like this?”. I feel obligated to do my level best to sort out these things while I’m still able to, so that no one has to deal with it when I’m gone. No fights over anything, no arguing over who has to deal with it, no resentment that X person got Y thing and you only got Z. Which is a real thing that has happened in my life before with Christmas presents and it devastated me. I’ve also had to stand by and watch relatives argue over my dead grandfather’s things. It’s a really shitty situation.

And you know, there is really no delicate way to ask someone, “when I die, is there something I own that you want?”

Who gets my drawings?

Whoever gets my computer gets it sans hard drive and that’s all there is to it, sorry. My best friend has strict orders to destroy that.

Don’t think that’s not going in my advance directive.

Can We Talk About This?

Avoiding a problem is never useful.

It’s not true that avoiding a problem won’t make it go away. It WILL go away. And you’ll have no control over how it ends, and that will be entirely your fault. If you don’t talk to a loved one about their alcohol addiction, eventually it will kill them, or ruin their life, or continue to make you miserable until you leave. If you avoid thinking about how you can’t pay your rent, they will evict you and then you won’t have to pay rent anymore because you’re homeless. If you avoid dealing with those chronic headaches, it will eventually go away when that aneurysm bursts in your head and you die on the toilet.

If you avoid letting a loved one talk to you about advance directives and worst case scenarios, they’re going to exclude you from those decisions.

I have had the worst time trying to talk to my family throughout this mess. Although I am optimistic by nature, and always believed (errantly, it turns out) that it was going to end up being no big deal, I wanted to have that conversation with the ones I love. Just in case. I would very much have rather had a talk, “I am undergoing tests to find out what the problem is, it may be nothing permanent, but in case it IS, can we talk about what we’re going to do about it?” and then calmly discuss the options as theoreticals and whatifs. It’s easier to imagine making a house wheelchair accessible when you know it isn’t a certainty, because you can look at all of the angles, the practical points, without spiraling into depression because you’re picturing me in that wheelchair already.

I’d much rather tell you when it’s theoretical, than to have to have the conversation be, “I’ve been diagnosed with ALS. This is terminal, and I need to set up an advance directive, and I want to talk to you about that.” Because now you’re freaking out at me – I’ve just told you that I’m going to fucking DIE. And so instead of a theoretical situation, it’s a very real one, and now I have to tiptoe around you flipping the fuck out while I’m trying to tell you to just fucking let me die when I stop breathing on my own. Instead of a calm rational talk, I feel like I have to console you and calm you, when you should be helping me plan the end of my life.


THEN, while they were theoretical and potentials. Instead of attached to a definite prognosis with a finite lifespan, because I wanted to have this conversation WITHOUT you going through your own grief at me while I’m trying to get things squared. I’m trying to tell you how I want to die and when, without having to watch you come to terms with my terminal diagnosis. I needed you to start preparing for that idea THEN, when it was “IT MIGHT HAPPEN AND I WILL NEED YOUR SUPPORT WITHOUT YOU FREAKING OUT ON ME.”

I’d rather have a talk “Hey guys, I might have ALS or something similarly deadly and terrible, so I’d like to talk about what happens if that’s true, but it might not be that at all” and deal with possibilities and still have hope, than “I have ALS, I have maybe 2 years to live. Here’s what I want.” and then have to deal with the wailing and gnashing of teeth and watching them go through the 5 stages of grief all over me.

You must be at least THIS CALM to go on this ride.

Also not helpful? Switching on Christian Mode. It’s another form of denial. “We will pray for you. God will fix this. God is more powerful than anything and he will heal you.”

Okay, but what if He doesn’t? What if, in His infinite wisdom and grace or whatever, He decides I need to die? You don’t fucking know. If all things happen for a reason, then He gave me ALS for a reason and faaaaaaiiiiirly sure it’s not just to fucking cure me of it later. So, pray for me, sure. Yes, please. But also help me plan.

“Our God is powerful and he will fix this” does not figure in to an advance directive.

“Does…she want to be resuscitated?”


“…She’s flat-lining. We kiiiiiiinda need an answer to that question right now. Does she have a DNR form?”


“Well, she’s about to meet Him.”


My mother – and I love her a lot – had her own brand of denial going. When I first started talking about my problems walking around and how I was starting to get medical help for it, she steered the conversation towards ANYTHING else. And when we started to narrow things down, I wasn’t allowed to admit out loud to her that it was possibly ALS:

there are always cons. So they haven’t ruled out ALS yet? What’s wrong with them?????

oh no, it’s still like a 50/50 chance that it IS ALS.
still VERY much on the table

well, it’s NOT.

…And then later in that conversation she told me she was jealous of my medical problem because at least nothing HURT, which is more than she could say for herself.

…I don’t think she’s jealous anymore.

My mom’s not the only one, of course. I’ve been forbidden to die by more people than I can count. “You’re not allowed.” Which, ha ha, yeah it’s cute, but when I’m trying to tell you HEY I AM NOT GOING TO BE AROUND FOR A LONG TIME LIKE WE THOUGHT SO CAN WE THINK ABOUT WHAT NEXT? I need you to have that conversation with me.

The moral of the story is this. It’s an all-purpose statement. When someone you love is going through some serious shit and they are trying to talk to you about it – if you love them, you OWE IT TO THEM TO LET THEM TALK. And you owe it to yourself to participate in that conversation.

Because if you don’t participate in the conversation, you forfeit the right to participate in the decisions.

My Medical Posse

I’ve just done the math and figured out that I have seen 22 different medical professionals over the course of things.

Primary Care Physician – whom I first reported the problem, who ordered some blood work with…

Phlebotomist #1 – and also an x-ray from the…

X-Ray Tech – but the images were normal so I was referred by my PCP to the..

Physiatrist – who asked for an MRI with the…

MRI Tech – who sent test results back to my physiatrist, and because there was an anomaly I was sent to see the….

Orthopedic Surgeon – who decided the anomaly was unrelated and sent me back to my physiatrist who then referred me to….

Neurologist #1 – who did preliminary testing, and then referred me for an EMG with with preliminary bloodwork from the…

Phlebotomist #2 – who did the first round of blood draws – sixteen tests over six vials, but I hadn’t been told I needed to fast for one test so I had to make an appointment to see the…

Nurse – who dealt with my glucose tolerance test (melted otter pops never tasted so gross) and then I was free to see the….

Neurologist #2 – who did the EMG and asked for an upper spine and neck MRI with the….

MRI Tech #2 – who did her job spectacularly and then the results came back to the neurologists but they were baffled so I was referred to…

Neurological Specialist #1 – who was completely baffled and surrendered me to…

Neurological Specialist #2 – who has become my guide and ally through all of this, and she did more EMG pokery and sent me for more blood work with…

Phlebotomist #4 – but those results were normal too so we opted for a very expensive genetic test which required a blood draw from…

Phlebotomist #5 for Athena Diagnostics – and while we waited for that result, I was referred to weekly physical therapy with..

Physical Therapist #1 – and the next week with…

Physical Therapist #2 – and the next week because of terrible weather with…

Physical Therapist #3 – and sometime in there the results came back negative so I was sent off to see the….

Spinal Tap surgeon – who put a fucking NEEDLE IN MY SPINE (tho it seriously wasn’t that bad, House lied to me) and the tests were all normal and meanwhile I had a consultation with…

Physical Therapist #4 – who was called in to do consultation work on me with PT #2, and my doctor referred me to get a biopsy done with…

Surgeon for biopsy – who did the cuttery which led to test results which led to my diagnosis.

..And yesterday I added a technician with a medical prosthetics company to my menagerie.

There will be more, of course – there will eventually be a dietician and a speech therapist and a host of other people. But for now, my posse is 22 strong.

Breaking the News.

There’s not a lot of good in a diagnosis of ALS.  Probably there’s NO good in it, except possibly finding out the real character of the people around you.  Which does not always amount to a good thing.  You learn things you didn’t want to know.  Sometimes people show unexpected grace, sometimes they display amazingly cold-hearted selfishness.  And sometimes you find out that someone you didn’t pay much attention to is actually an amazing person, and now you don’t really have a lot of time to get to know them properly.

I’m saying it sucks.

I’m facing a lot of challenges.  The worst  is yet to come, I’m certain; I still have most of my functionality, I have a good job, everyone’s being really supportive.  No matter what I may be dealing with right now, it will all pale in comparison to the day I’m finally confined for good in to a chair.  When I need help to get dressed.  When I can’t eat.  When I eventually stop breathing and die.

But for now?  The worst part, EASILY the worst part, is having to tell people what’s happening.

I’m a stupidly empathetic person.  I don’t know how to simply be sympathetic.  “This must suck for you” may come out of my mouth, but my heart is breaking for you.  I don’t know how to not do that.  I don’t know how to just observe someone’s pain or anger or fear.  I’ve never, ever been good at this.  I have always reacted more viscerally to other people’s drama than my own.  I will let myself be stepped all over, but God help you if you fuck with a friend of mine.  There is no such thing as casual observation in my world.  All of the stupid sappy videos on the internet – ALL OF THEM – hit me square in the feels.  I can’t watch movies that contain a lot of suffering, they freak me out.

I don’t know how to tell someone I’m going to die without it destroying me on their behalf.

It’s really fucking stupid.  I mean – it’s happening to ME.  This is MY life cut short, but I find myself apologizing profusely when people find out, and I’m very quick to reassure them that I’m okay.  Even  though I’m not.

I told a coworker today.

He got on the elevator with me this morning, just the two of us, up three floors.  This guy and I are not close coworkers, he’s a total asshole, but I kind of respect him for that.  He’s blunt.  Very straight forward.  When I had a problem with another coworker, he was one of my staunchest allies because he calls bullshit when he sees it.  I admire his ability to stand up for himself like that.

He wished me a good morning, and asked if I’d ever found a solution to the back/hip/knee thing that has been plaguing me.

“Uh.  Yes, actually,” I told him.  “It’s uh…ALS. Lou Gehrig’s.”

And I watched the reality hit him and take the light out of his eyes for a split second.  He’s probably the first person I’ve told that immediately understood exactly what this meant.  “Oh my god, I’m so sorry.”

I smiled at him, “Thank you.  I’m doing okay, though.  I’m going to keep working as long as I can.  I’ve got lots of time.”

He asked what the prognosis was.

“Typically three to five years,” I said, “but my progression is really, really slow.  I’ve got time.”

It felt like I was stabbing him.  “I’m so sorry.”

And because he was shaken, and because this was terrible news to him, I felt like I had to cheer him up.  “I’m doing okay though!  I’m happy to have an answer!  I’m doing fine!”

He put his mouth in a smile shape.

“…I’m sorry for bumming you out,” I told him quietly.

“NO,” he said quickly, “no no no.  You didn’t.  I’m sorry this happened.”  His mind was elsewhere.

He and I didn’t say much else as we got off the elevators and walked to our cubes.  I sat here at my desk awhile, my brain going a million miles an hour, wondering how the hell I could have said that different, how do I frame that so that it’s not ….

…so that it’s not exactly what it is, which is a coworker/friend/family member/acquaintance telling you “I have a terminal disease”.

It is likely only so touchy and raw right now because the diagnosis is still so new to me.  I can’t expect someone to blithely accept something like this when *I* haven’t even dealt with it yet.  And there’s no real comfort I can supply.  “It’s okay” is a lie.  It isn’t.  And I’m not yet okay with it not being okay.

I’m saying it sucks.

I don’t have the tools in my Cabinet of Social Awkwardness to deal with this properly.  If I’m going to be so goddamned empathetic, I feel like I should at least ALSO be intuitive enough to know how to tell people something like this in a way that’s not going to be shitty.

“Do you like baseball?”

“Hey, heard of Stephen Hawking?  Turns out we have a lot in common!”

“Good news!  It’s NOT cancer!”

A friend with a sense of humor just as fucked up as mine suggested, “Oh, it’s not cancer!  And it’s not heavy metal poisoning!  They said that I don’t have to worry about either of those; because those take YEARS to kill you!”

…yeah I don’t think that’d go over so well.

For me?  I prefer to be told straight up, with a matter of fact idea of what to expect.  It’s how I was told of my diagnosis to begin with, and I couldn’t have asked for better.  But not everyone can deal with that.  This is why I tried to tell people all along that something like this was a possibility – I’d rather have that be mulling around in the back of their head for awhile, and then confirm their worst fear, than tell them “I have ALS, I’ve got a handful of years to live” and have them freak the fuck out all over me.  Because THAT is what makes me freak out.  Not my own diagnosis, but the way people react to it.

THAT, so far, has been the hardest part.

I’m sure in a year’s time I’ll look back on this and laugh myself sick that THIS is what I was agonizing over.

But for now, I am hurting those I love and I’m powerless to stop it.

And I hate it.

I’m saying it sucks.

The Road to Diagnosis, Part Two.

Electric Boogaloo.

When we last left our intrepid adventuress, she was…pretty much where she started!  But now had orders for a full spinal MRI and a referral to an amazing specialist.

Symptoms now were a pretty obvious ‘gait disturbance’ – I’d started to have coworkers asking me if I’d hurt myself.  Another one pointed out that I had a tendency to lean against walls when I walked, which I didn’t notice until he said something.  I didn’t HAVE to rely on the wall for support, I could still walk fine on my own, albeit with a limp, but I guess subconsciously I wanted that support.   The thigh twitches were constant, sometimes so bad I could watch them happen through a pair of jeans when I was sitting.  The cramps had stopped happening just at night, and had started randomly happening for the stupidest reasons.  I’d try to sit cross-legged on the floor and NOPE SORRY YOUR THIGHS ARE GONNA CRAMP LIKE HELL NOW OK.  But if I just stretched through it, I’d be able to sit cross legged no problem.  I’d wake up at night with terrible cramps because I let my foot lean off to the side while sleeping on my back because that is what it DOES when you are relaxed and sleeping, but no.  I’d have to wake up and roll over.  Because I was cramping.  From sleeping in a relaxed position.   Occasionally I started getting cramps in my stomach and sides, too, like a running stitch.  There was still absolutely nothing wrong with my hands.  No slurred speech or anything.   I was noticing definite muscle tone loss in my calves.  Handrails on stairs were now kinda mandatory.  Elevator over stairs every time. 

I really, really missed dancing.

It was also around this time that I started having to tell people that something kind of serious was going on.  I agonized over how to tell people that wasn’t a five minute origin story out of a lame comic book for the world’s worst superhero, or a overly dramatic “I AM BECOME CRIPPLED.” 

“Did you hurt yourself?”

“Well no, about a year ago I found out I have a hard time running, and then it’s sort of progressed to this constant limp but we don’t know what’s actually causing it but nothing hurts and we’re figuring it out but so far it seems to be some sort of neurological thing.”


“I’m losing my ability to walk.”

Both are factual, one’s boring and long, one sounds so much worse than it actually was. Probably. I hoped.  The previous sounds like an apology, sorry to bother you but I’m okay really thank you for asking I’m sure it’s nothing to worry about at all but thank you for noticing and asking after me how are you? The latter is some pretty harsh words, which are then followed up immediately by “BUT IT IS PROBABLY NOTHING AND TOTALLY REVERSIBLE I’M SURE IT’S FINE.” I’ve also used a sort of dismissive “I’ve got some sort of neuro thing going on” which is…open ended and ambiguous enough to be worrying.

One total stranger guy asked if I’d hurt myself moshing.  Because LOLZ I HAVE PUNKY COLORED HAIR AND TATTOOS AND MOSHING IS WHAT US YOUTHS DO AMIRITE?  I felt like telling him, no, I’m just so fucking punk rock that my neurons are burning themselves out.

…I still haven’t worked out how to drop this on people when they ask. 

So ANYWAY!  MRI.  That happened.  I went to see the awesome specialists’ colleague instead, because awesome specialist mostly dealt with ALS.  I was happy to be taken off her plate if that were the case.  The new to me specialist was baffled, some more.  She wrote me up as “Diagnosis: Remains unclear at this point. Considerations include peripheral nerve disorder (Charcot Marie Tooth, hereditary) vs motor neuron disorder (Spinal muscular atrophy vs ALS variant) vs less likely primary muscle disorder.” I continued to be an enigma.  I wasn’t a good candidate for ALS because it was only in my lower limbs, and progressing so slowly.   But it was probably not multiple sclerosis, or muscular dystrophy, maybe it was Charcot Marie Tooth (which I started calling sharktooth marie because they SORELY missed that opportunity themselves when they wrote it up).  In the end, she conceded defeat immediately, and talked to her colleague, the one I’d originally been referred to but was not accepting new patients except for ALS.  Worrying.  I guess I was intriguing, though, because she took over my case.

This is how I started working with Dr. Kimberly Goslin, who is amazing.  Every doctor I’ve dealt with had agreed with me.  The neurologist I’d initially seen told me she was doing amazing work, when he referred me over.  I was also referred to physical therapy, just in case it was reversible with some work, and my physical therapist noted who I was working with and said, “OH!  She’s REALLY good.”  I wound up seeing three other therapists there, and they ALL commented that she is good.  The neurologist I saw instead of her seemed relieved that Dr. Goslin agreed to take my case, like she was bowing to a far superior talent. 

In the meantime, I had all of the blood tests I hadn’t already done, and a redo of a couple of them, like my creatinine kinase, which is an enzyme present when there’s muscle damage.  It had been high before, so they wanted to see if it was getting worse.   I had a referral to a physical therapist to see if I needed some kind of walking assistance by way of braces or cane.   They didn’t see a need for it yet, because I could walk without falling or anything on my own.  My balance was still good.  The actual therapy exercises focused on strength building – we didn’t want to overexert me and burn out neurons if it was something degenerative, but we wanted to do SOMETHING, so my exercises concentrated on making the muscle that I still had stronger, so there was more power to call on when I needed it.  I discovered in my initial appointment that my foot had a tremor, which was new. 

I met Dr. Goslin in November of 2013and had more stabs and shocks.  I am now an electric voodoo doll.  She redid all of the usual tests about strength and balance, and then poked me with electric needles.  She said the most likely candidate at the time was Sharktooth Marie, which there was a test for, but it was crazy expensive and hard to get approved.  We went ahead seeking that approval.  It was the best option, too, out of the remaining possibilities – still degenerative, still me in a wheelchair, but not dead.  In the meantime, while we waited for approval for a $15,000 genetic test, we talked about other avenues of investigation.  A spinal tap, maybe, a muscle or nerve biopsy.  More blood work, just to rule out everything ever.   Luckily my insurance was/is awesome because I work for a really good company, so the testing was approved.  We started mixing in e-stim with my physical therapy, which seemed to help a bit. 

In December I noticed a slight tremor in my hands.  It seemed to be sporadic, and it didn’t really show unless I was holding a mirrored compact or something.   No loss of strength at all, just, a little wobbly when trying to hold a camera still.  My PT wasn’t too worried about it as there was no loss of strength, and it wasn’t a horrible tremor.  Might have been there for awhile, but I only noticed now because I was sensitive about changes to my hands.  Still no fasciculations in my arms or hands.  Still breathing fine.  Still swallowing and speaking normally.   I had the followup with the orthopedic surgeon about the thing in my hip, and that was unchanged and fine and I can safely ignore it.   The twitching and cramps in my legs were starting to interfere with sleep at this point.  It’s like when you’re about to fall asleep and you have that quick little dream about falling, so you wake up.  Only it’s just your legs.  Obnoxious.

In January 2014, I got the genetic test for CMT done, which came up negative.  Dammit.  I saw Dr. Goslin for the second time and she noted no loss of strength since the last meeting, and she didn’t seem too worried about the hand tremor, but she noted it.  Our next step, she decided, was a spinal tap, which I had done January 17th.  It was…interesting.  Certainly not pleasant, but no where NEAR as horrible as House makes it seem to be.  Definitely not the most painful thing I’ve ever been through.  The spinal headache I got following the procedure was annoying as hell though, and lasted about a week.   All of my CSF tests came back normal.  So it was definitely not MS, not an infection, not a host of other things. 

My follow-up appointment in March wound up with a  referral to a surgeon for a muscle biopsy.  There was a 70% chance it wouldn’t tell us anything, I was cautioned.  But at that point?  A 30% chance is far preferable to no chance.  Some information is better than no information.  At this point, my diagnosis was hovering between it being a motor neuron disease like ALS or a motor neuropathy.  It might be MND because: I’m a lot younger than most people who get diagnosed with ALS. It’s only attacking my feet/legs. It’s progressing slowly.  It might be ALS because: MNDs don’t typically include fasciculations (the twitching), but it’s very typical of ALS. We found out in this appointment I also have slight hyperreflexia in my jaw – which is a tendency to snap my mouth closed when my chin is tapped. Which I did not know about until that day.  We talked about immunotherapy as an empirical trial, just in case it was some inflammatory disorder – it couldn’t hurt, and if it helps, then hooray!  We talked about either a steroid like prednisone or IVIG therapy.

We also tried me on klonopin to try to control the twitches, which turned out to be a DREADFUL MISTAKE.  It spiraled me into this horrible horrible depression, so we backed the hell off of that after one week and never spoke of it again.  After the biopsy, I was to be referred to PT specifically to talk to them about ankle-foot orthotic devices – in the biz, we call them AFOs – and revisit that option to help me with the fatigue when walking long distances.  Like the mile I walk to the bus stop every day to go to work. 

I had the biopsy March 12th.  It came back showing signs of significant active denervation. “What this means,” Dr. Goslin said in an email, “is that there is evidence of ongoing damage to your motor neurons. There is no evidence of inflammation; I had been hoping to see inflammation which is more treatable. As discussed, we will repeat the EMG when I se you next and talk about whether we should consider a trial of immunotherapy.”

I had my appointment to try out AFOs on March 28th.  THEY ARE FUCKING AWESOME.  Oh my GOD the difference. 

My follow-up with Dr. Goslin was initially set up for April 3rd.   She got the full results of the biopsy, while I had been emailing her asking her about the klonopin and could I get the fuck off of it please.  Can I just state, for the record, that being able to email my doctor IS GODDAMNED AMAZING.  I LOVE THAT.  We had a little bit of back and forth in that conversation, and she asked if I wanted to move the appointment up; she had an opening on Tuesday.

I said yes, please.

It hit me after, that my appointment was now on April Fools’ Day.  I posted something to facebook on the way to the doctor’s that no matter what the result of that appointment, people would think it was a prank.

I was officially diagnosed with ALS at that appointment.  I wished it was a prank.  But it wasn’t.  And this is my life now.

My suddenly finite life.

The Road to Diagnosis, Part One

I tell people it was around November of 2012 when I noticed something was awry.  That might be a lie, though, I don’t really remember the exact time.   I just remember what happened.  I was walking to work that morning, and crossed the street while a car waited for me to do so.  I’m a polite pedestrian, so I hustled a bit – or..tried to.  I tried to jog out of their way, but it was like I’d forgotten how to mechanically make that work.  It wasn’t really a jog, more like a spastic controlled…flail? My legs just did not go how they were supposed to go. I didn’t fall, it didn’t hurt, there was just something clearly mechanically wrong with the way I was moving; like I’d forgotten how to run. It kinda freaked me out, but of course I shrugged it off and didn’t do anything about it.

It got weirder after that, I noticed that anytime I tried to jog that same thing happened, and if I tried to walk fast, it’s like I was physically unable to move that quickly. Any attempt to walk fast turned into a robotic sort of stomping.  Then I noticed that I got worn out really easily when I walk; and truthfully, that was the most irritating part. It was only a little over half a mile from my house to the train stop, but I was covered in sweat by the time I get there, even on cold mornings.   Again, no pain, nothing felt awry, just…a weird little dip in my right hip when I walked, a little bit like a pimp walk.   It would have been easier if there HAD been pain, something concrete to point to, besides “I feel like I’ve forgotten how to run”.

May 31st I finally went to see a doctor about it.  She agreed it was very strange that there was no pain, and agreed that it WAS a little bit of a pimp walk.   “Which is fine, if you’re a pimp, but does YOU no good,” she said, and that is why she was my favorite PC doctor of all time.  We thought it might be hip dysplasia, so I was sent off for x-rays.   I was worried about that being the case, since the only fix for that is surgical, eventually.

Oh, younger me.  How you’d come to WISH that had been the problem.

It was around this time that I bought a house.  Because, I guess my life wasn’t complicated enough?  So in the months to come, in addition to juggling work and school and medical appointments, I was dealing with a short sale of a 2 story house, and then a month of preparing the new house to move in and packing up my old place.  I should mention here, that I don’t drive, and I live alone.  So after work every day, I’d walk the just over 2 miles from my old place to the new one, work on it until dark, and then walk home.  My older brother loaned me his bike, so I didn’t have to walk at least, but trying to ride it home that night did NOT go well.  I could not keep my balance for the life of me, and pedaling the bike, while on a slight incline, was impossible.  I wound up with a migraine (which I am prone to), disoriented and lost (which I am NOT prone to, but hey, migraines make your brain not work), sitting on some stranger’s curb while I got my bearings.  I chalked that up to “I have not been on a bicycle in like 20 years and they are scientifically proven to hate me”, and walked the bike the rest of the way home.  I knew that walking back and forth would not be an option forever, particularly because my new house was a mile from the nearest bus stop, so I made plans to get a scooter license and signed up for lessons.

They did not go well.  In retrospect, it’s totally obvious what was going on, but all I knew that Saturday was that I was the ONLY one unable to keep the motorcycle upright.   At the time, I was not sure what happened, exactly, but I lost my balance and the bike was heavy and took me down with it.  Over the course of the next hour, I dumped the bike over on me three times, skinning the hell out of my knees like a six year old, because (again, I realize now) I did not have the strength in my feet to keep myself and the bike upright.  I left the lesson early, humiliated.   Only now, I realize that I had something really serious going on and it wasn’t just that I was clumsy. 

The x-rays came back normal, so there was no hip dysplasia, so I was sent off to a physiatrist.  I had two sort of falls around this time – once, I was stepping up on a tall curb, and I couldn’t/didn’t lift my foot high enough while walking over it and wound up on my knees.  Not hurt, really, just really, really confused.  Another time I was helping my friend move a 135 pound flatpack desk into my house, and I was giving him grief for making me walk backwards up the stairs with it, he said HE was the one with a bum knee. “I’m the one with …whatever the hell is going on with me,” I told him, as I was walking backwards over the threshold. And then as if to prove it, I just kinda…sat down. I couldn’t lift my foot high enough to clear the step. There wasn’t a twinge or anything, just, suddenly didn’t have the strength to walk.  At that point, I could stand just fine, indefinitely.  I could balance on either foot with no problem.  Walking up stairs was beginning to be a little rough, I found myself using handrails more often than not. 

It was sometime around here that the fasciculations and cramping started.  The cramps only happened at night, mostly my calves, like the worst charlie horses.  I don’t know when the twitches started happening, only one day I realized that they’d been going on for awhile, almost exclusively in my thighs.   Some nights would be awful for cramps, then I’d go for a week or two with nothing at all. 

The physiatrist was baffled.  No pain, just a hitch in my walk, no apparent weakness.  I went for an MRI in August, which found a little lump in my hip, and we really thought we’d found something – cancerous, maybe, but dammit it was an answer!  Only the orthopedic surgeon I was referred to said it was almost certainly nothing to do with anything and had probably been there my whole life.  We made another appointment for a followup MRI in December, just to make sure it wasn’t growing, but she advised I proceeded with other avenues in the meantime.   We decided to pursue it as a potential neurological problem, and I had my first neurologist appointment in October of 2013.  Sometime between making the appointment and having it, I discovered on my own that I didn’t have the ability to stand on my toes anymore.  I could pull myself to my toes if I gripped a counter or something, and stay there for a couple of seconds, but I couldn’t stand tippy-toes on my own.   During the appointment, we discovered that my feet don’t sense temperature very well – which I’m STILL trying to figure out the relevance of that.  They can feel pain and vibration and everything just fine, but the cold tile floor and his instruments felt warm to my feet.  Curious.  He didn’t have much by way of answers, so he asked me to do an EMG with a different specialist and a whole lot of blood tests to rule out things like diabetes.

So the nerve study was unpleasant. It’s not unbearable, by any stretch, but man. He did a couple of the usual tests to get a baseline of the problem – walk down the hall, pokey with a safety pin to gauge sensitivity, that sort of thing. He remarked with surprise that my feet were icy cold. He checked reflexes, of which there are practically none in my ankles, and told me that there are practically no muscles in my feet at all. I mean, they’re THERE, but they’re really weak. “You have thin feet and high arches. Has this been a problem for long? Have you always had some weakness in the feet?”

“Uh..no,” I told him. “I used to dance. A LOT. Almost exclusively on my toes.”

We moved on to the unpleasant. He warned me about what was going to happen, and apologized in advance for the discomfort. “I may want to put some needles in, to measure the current in your muscles.”

“Well, you can see I’m not afraid of needles,” I told him, waving at my facial piercings and tattoos.

The tests were done on my right foot, ankle, and calf.  He asked if I ever had twitching, I told him they were happening right now – he looked for a second at my other leg and said, “so they are.”  He had no solid information for me, only that he wasn’t sure that the other neurologist’s tentative diagnosis of motor neuropathy was correct.  I had no decreased sensitivity to my skin, I still had sensation, which is not indicative of nerve damage so much. I had normal strength in my legs, but almost none in my feet. There was also decreased reactiveness to the muscles from the nerves. He’s not sure what to think.

I don’t like hearing that from doctors. 

He told me he’d like to see me again. 

I don’t like to hear that from doctors, either. 

Even if they have delicious British accents.

The only thing he was certain of was that it was NOT myopathy.  But he wasn’t certain about any other aspect of it, so he wanted to do some upper limb testing.  Just to be sure.   After the upper limb EMG in November, he conceded that he had ABSOLUTELY no idea, so it was off to a full spinal MRI and a referral to another neurologist that dealt exclusively with neurological disorders rather than general neurological surgery.  She was amazing in her field, he said, and she’d be the best person to work with further.

This is about the time I began to admit to myself that I might actually be in some serious medical trouble.  Up until then, I’d thought it was a pinched nerve or something stupid, something easily corrected.  Like the doctors would just get a lightbulb over their head and Dr. House it out of my life.  We’d sort of talked about some of the possibilities, worst worst case, and of course ALS came up as a potential.  He said it wasn’t looking that way, though, since it was just affecting my feet – it usually starts in both hands and feet.  But he wanted me to know it was still out there.  But maybe he was wrong and it was a motor neuropathy after all?  But he’d defer to the specialist, because the two of them have come to the end of their skillset. He posits that it is (possibly maybe perhaps) a spinal injury or disease of some sort, or something like a moto-neuro disorder. Like Lou Gehrig’s. He was quick to say that this was just one of the FAMILY of disorders it might be, he’s not saying that it’s that. Buuuuuuut didn’t say it wasn’t, either. He was very frank and said that he didn’t want me to think he was withholding any information from me, but he just didn’t know, and he admits that it might be something along those lines. 

PROTIP TO DOCTORS:  DO THIS.  Be frank and open and upfront and honest.  Seriously.  This prepared me for what was to come, and saved me SO MUCH ANGST.  Because by bringing this up now, as a possibility but not a probably, he planted the seed in my head and I started thinking about it.  At this point it was a sort of safe, intellectual exercise.  It was very much on the table, but it wasn’t looming over me immediately, so my brain had time to play with the idea of dying prematurely, of what would happen if I were diagnosed with ALS.   I discovered that night through thinking about things when I should have been getting to sleep, that I am – on a very intellectual level anyway – okay, really with the idea of being in a wheelchair someday. I can think about that without freaking out. It  would suck. A lot. But I could adjust. I think my most pressing problem would be not running over the cats accidentally. And having to sell the house and move again, because – 2 story, dammit. 

But then I thought about losing use of my arms, since the neuros seemed baffled that I haven’t lost strength in them; I wondered if it will happen eventually, if it’s something scary. And I freaked out. I am VERY not okay with that. I can deal with not walking ever again, but…not being able to type on a computer, pet a cat, bake cookies, no. I’m not okay with that at all. So I stopped thinking about it.  I’m actually glad I found that limit, though, so I knew that I’m not just handling this really awesomely because I’m in flat-out denial. That’s a good thing.   But the problem with the scary ones is that they’re differential diagnosis – meaning, there’s no one test that says YES IT IS THIS THING.  You have to dig around the outside and find out what it ISN’T.  And meeting this specialist was the first step towards that. 

That’s where Part Two starts.  Spoiler Alert: it starts with an MRI and ends with ALS.


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.


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.


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.