My ALS Clinic team is getting a new doctor. Dr. Goslin called me and said they were putting together a newsletter to welcome him, and asked if I would write something about my experiences with the clinic. “Hopefully positive,” she said, and she needn’t have worried. I told her I’d be delighted. This is what I wrote.
It is not hyperbolic to state that ALS is one of the worst things that can happen to someone. Second perhaps only to Alzheimer’s disease in the completely undignified and terrifying way it kills, a diagnosis of ALS is absolutely devastating. It is also not hyperbolic to state that one of the best weapons against the ravages of this disease is the multidisciplinary ALS clinic. I personally cannot imagine going through this disease without my care team. A dedicated team of experts coming together to get the big picture and provide not only treatment, but expectations and support, is a luxury very few people are ever gifted with.
The ALS clinic makes the journey not only better, but perhaps even possible at all. Scheduling so many appointments with so many separate providers would become a job in itself; a Herculean task when one is already exhausted from just continuing to be alive. One day every three months for a four hour whirlwind tour of health is a tremendous relief of burden, even without considering the travel times. In addition to the vast benefit of freed time and effort, the end-of-day consultation when the whole team comes together to talk about me as a whole and complete person, instead of a series of interesting little snippets, provides for a much better plan of attack. A completely holistic and complete picture of me as a person with ALS, instead of a case file of how ALS is affecting Patient X with regards to diet/respiratory/insert-your-favorite-discipline-here. It is so much better for the patient when doctors talk to each other – who knew?
ALS affects each person differently, and we collectively know so little about it that research on one’s own is almost pointless. It’s only through the collective care and knowledge of the team at Providence that I’ve been able to get a grasp on my disease at all. Every question I ask is answered, every minor complaint met with compassion and understanding, and above it all, the concern I’m given is genuine. I’ve never had such a beautiful working relationship with medical professionals before. The care and compassion of this clinic’s providers are one of the greatest tools a person with ALS could ever hope to have; a wonderful consolation prize.
If ALS is a Pandora’s box of symptoms and troubles, then the ALS clinic is the remaining hope. I’m wholly grateful for this resource. I literally could not do this without it.
I’d like to formally ask all of you guys to do something that you really ought to be doing anyway:
When you wash your hands, and splash water on the counter, wipe it up.
Again, you should be doing this anyway. But I ask this of you, because I can’t support my own weight on my own two feet anymore, so I have to lean against the counter to turn the faucet on to wash my hands, so I get a big wet line across my gut. And my hands don’t work very well, so I usually have to lean on my elbows to get them under the water and rub them together to soap up, so now I’m also wet to the elbows.
Just, dry your hands, then run that towel across the counter before you throw it away. I promise it’s not hard. I’ve always done it, when my body worked like yours does, so I know it’s possible.
I have always been a spooky kid. From a young age, I have been fascinated by the aesthetic of death, the graves and skeletons and ghosts, and later Victorian memorial photography and mourning jewelry. I was peripherally aware of death, of course, my whole life. We all are. It wasn’t until Jack Kevorkian came into the American consciousness that I learned that I had Definite Opinions about capital D DEATH as an absolute, as well as an aesthetic. I found that I strongly believe we all ought to have control over our own mortality, and had my first real experience with how afraid society is to discuss the subject at all. Later, when going through the Diagnosis Cha Cha, I experienced my first profound frustration with peoples’ willingness – and even their ABILITY – to discuss it at all.
Today I attended my first Death Cafe.
You can learn about them here: http://deathcafe.com/ It’s essentially a safe space to talk freely and openly about death, and it’s meant to be a really positive experience. I first found out about them through the Order of the Good Death; I’ve fangirled about Caitlyn Doughty and her Ask a Mortician video series before. I finally worked up the nerve to sign up and attend one; my hesitation was not at all about the subject matter, but about, you know…that whole show up and talk to total strangers. This is what I do here, of course, but in a more one-sided capacity. It was a space to get to know other death-curious people, exchange ideas, and finally -FINALLY – be allowed to talk freely about this whole ‘death’ thing.
We had a wonderful facilitator at the table, who was warm, inclusive, and knowledgeable. There was a young woman who had older parents and didn’t know how to talk to them about death, a wonderful older woman who had the same frustrations with being unable to talk to her loved ones about death, and an artist who works with the dying to design their own crematory urns.
FUCKING AWESOME, RIGHT!?!
…Damn right I got her contact info.
We all spoke for about two hours, about everything from death acceptance to memorial services and keepsakes to death-positive media. I learned about POST/POLST forms (a beefed up Advance Directive that is hot pink and you put it on your fridge so the ambulance folk know what you want). I got a very warm and supportive hug. I taught a delightfully sweary old woman the phrase “lalochezia”. I learned about support groups that aren’t support groups at all for the recently bereaved. We talked about how America doesn’t really have its own death rituals as a culture, and so when it comes to death, we are all at a loss as to what to do. I mean, wen someone dies, you show up with a casserole, but then what? We don’t have societal rules and custom for how to treat the dead, besides paying total strangers to come deal with it and sweep the whole thing under a clinical rug. We’ve become divorced from Death, and it is a damn shame.
I will definitely be attending more of these. It was a pleasant afternoon of drinking tea, eating cookies, and having a chat about things you don’t normally get to talk freely about. I highly recommend you seek one out in your neighborhood. The more we talk about this, the more normal it becomes, and the more healthy our attitude towards death as a culture becomes. And this is a good thing. It helps the dying to not feel so alienated. It helps the grieving to not feel so alone. It helps us all to know what to do, how to have these conversations while we still can.
Knowledge is power, indeed, and by talking about death, we destroy some of its mystique and its terror. We make it normal, and we help each other through impending loss – be it even our own departure. I want to be able to have these conversations with my loved ones, but until that becomes normal and okay, I can have these conversations with strangers.
I have been granted the singular privilege to bear witness to her grief.
My friend had her father ripped from this earth, eaten alive by cancer while everyone helplessly stood by. Cancer’s a motherfucker like that. Especially it seems, with men; men of an age too stubborn to admit Something Is Wrong until it’s too late, and pride stops them from accepting all of the treatments, all of the chances. Her father was like my grandfather, that way. My grandfather died of prostate cancer, and had refused potential treatments and surgeries because they’d make him ‘less of a man’ or some bullshit, but he fought on his own terms. It was his decision to make. And her father’s.
He had lived in South Dakota, and she had to return, to disposition his estate. She invited me along, because it’s beautiful there. I said yes, because goddammit someone needed to be there while she walked through her father’s place and went through his things. And because I’d never been. And she needed an ally. I went with her in the mindset to be as helpful as possible, to make this transition as easy as possible, to shield her the best I could from the inevitable shitstorm that happens when someone dies.
We had many, many conversations about grief, over the six days we spent together. I’ve always found, and I’m not alone in this observation, that grief brings out the absolute worst in people. Normally loving and trusting people are suddenly quibbling over who gets grandma’s Jell-O mold, and Brother X is angry that dad only left him $20k, but Brother Y got the house, even though Brother Y moved his whole family and job and world to be close to Dad to help him when he got sick and Brother Y never even called who cares because it should be split equal. Meanwhile Aunt Fran is going through the medicine cabinet and the liquor, and Neighbor Q has claimed that heirloom quilt even though you’ve never met her before she INSISTS that she came over like, ALL THE TIME to help and he said she could have it and starts crying, and they let her have it even though we’re all pretty sure Grandma made it for him when he was sick with measles when he was 12 and maybe she’d like it back, to keep her warm at the nursing home while she mourns the son she somehow outlived.
I have my theory that it’s because of a cosmic sense of entitlement. My one true, real, and serious beef with the Universe, is that it doesn’t stop and let you catch your breath when something horrible happens. So out of nowhere, my grandfather died, and I wasn’t allowed to catch my breath at all, I was suddenly thrown into funeral arrangements and visiting relatives I’d never met, and holy GOD, people can you LEAVE ME ALONE, my GRANDPA just died. And the thing is, they’re going through the same thing. Holy shit, my FATHER just died. My BROTHER just died. And we all walk around with this gaping hole in our souls, and it feels like the goddamned universe owes us something for the incredible injury it just caused. And when the materials are settled, you feel entitled to it all, because Jesus God, that was your GRANDPA. The Universe just took your Grandpa, you deserve that fucking stereo of his, something, a piece of him, a memory of the times you were laughing and frustrated trying to teach him how to USE the thing, and the dance party you had to his old music when he finally got it. And next to you, your uncle is thinking, holy fuck, I just lost my DAD. The universe took my Dad, the LEAST it could do is give me his stereo, that I bought him for Christmas that one year. Everyone is bleeding, mourning, thinking that no one else in the room has the slightest fucking CLUE how badly this hurts.
And they don’t. They can’t. Just as you are blinded to THEIR pain, by yours. Everyone is hollow and aching, and scrambling for what they believe the world owes them. In the process, their grief causes harm, the worst comes out in people, and the ending of a life all too often proves to be the ending of relationships. Arguments over funeral arrangements cost friendships. Dispositioning the estate has torn families apart forever.
I watched this process from the outside, flavoring it with my own experiences, because her father and my grandfather had VERY much in common. It was impossible not to draw parallels. Two very strong, hardworking men, good with their hands, generous to a fault, loving, open hearts, strong faith and strong backs. And very easily taken advantage of by unscrupulous people. It was hard watching her have to be The Bad Guy, because she has no record of ‘gentlemen’s agreements’ and no, she wasn’t about to give up two thirds of a property just because they were friends, and it just didn’t seem to get through peoples’ heads that yes, this all belongs to HER now. They’d lost their friend and felt entitled to things, but she was his DAUGHTER and he entrusted her to take care of his estate.
I helped her go through his things, and decide what to donate, what to throw away, what to keep. It was like tiptoeing through someone else’s life, all at once mundane and profound. You get a secret glimpse into someone’s private life, and it feels like sneaking and prying, though they’re not there to mind it. Dirty dishes still in the sink. Half packs of gum on the kitchen counter. Mundane. A shelf of books, a peek into the sorts of things that entertained him. Profound. Clearing out the bathroom of half-used toiletries. Intimate. A total stranger, putting a dead man’s clothes in a bag for donation. Invasive. Every new thing a question for his daughter, “What would you like done with these?” Overwhelmed.
And through this, I gained incredible insight.
I had gone with the express intention of helping her through some serious shit, and provide happy distractions while she showed me around the very beautiful places, but I wound up with a concrete and valuable reaffirmation of a lesson I had already learned. A solid restatement of something I already knew to my core.
DO NOT PUT OFF SETTLING YOUR FUCKING ESTATE.
WRITE YOUR MOTHERFUCKING WILL.
Decide what you want to do with all of your shit, BEFORE you die.
He didn’t want to think about it, and I don’t blame him, really. In his case, settling his affairs was outright admitting he didn’t believe he could beat cancer. Not at ALL because he didn’t love his daughter and didn’t want to make things easier for her, but just because he was afraid. So even though she asked the hard questions, and he knew he should answer them, he couldn’t. He couldn’t face that fear, that pain, that reality. A friend of mine failed to settle his affairs and left his wife in chaos because he didn’t want to think about it. I haven’t sealed up my things because I am lazy and believe I still have some time. There’s a thousand excuses why not to, but it comes down to, it’s boring and depressing, and you’ve told yourself you’ve got time to think about that.
But maybe you don’t. That’s why NOW is the time to settle your affairs. You need to have a Living Will, at least. Those cost nothing. But you should have a plan, a document that lists who’s in charge of your bank accounts, your online accounts, your healthcare decisions, who gets your shit. You should have that settled NOW, before you know your clock is ticking. Because it still is, even if you don’t hear it right now. Everyone should have a plan for what becomes of them, their things, their feelings should be known. Even 12 year olds. Who gets your diary and your band posters?
I realize, more than you know, that it’s really hard to think about. It sucks. A lot. Your brain goes all staticky because you don’t want to imagine that world you no longer exist in. I believe it is literally impossible for the human brain to fully grasp the concept of your own death. It’s too big an idea for your brain to hold. But you have to make this plan. You have to make your wishes known. You have to write down somewhere, how to access all of your accounts. You have to decide who is going to have to be burdened with making sure your will is known and carried out.
Because the alternative is making your wife collapse into tears because you have so much fucking paperwork to sort through and you never talked about what was important and where your passwords are. The alternative is some shifty relative making off with your sewing machine even though you meant for it to go to your sister, but no one knew that because you never fucking wrote that down anywhere. The alternative is someone accidentally donating that book to Goodwill that you had hollowed out and stored ten thousand dollars in. The alternative is your wayward child completely fucking over her siblings because you didn’t SAY who should settle your estate, and your children are too buried in their grief to care as much as they should. The alternative is causing your loved ones a world of hurt and unfairness, on top of the aching loss of YOU, because you found it too depressing to think about. Only now they’re drowning in that depression, and you’ve left them no handholds.
The alternative is my friend, buried up to her neck in funeral arrangements and memorial services and going through her dead father’s belongings and trying to determine what’s valuable while fending off opportunists. Too busy to allow herself to grieve, unable to let herself fall apart, because her father didn’t want to have those conversations while he lived. And so now she lives in a state of suspended grief, unsure when it will all come crashing in, willing herself to keep it together just a little bit longer. When it’s not fair that she HAS to. This was her FATHER. She loved him with her life. She took care of him in his final moments, and the Universe owes it to her to let her mourn.
But the Universe is not fair, because it doesn’t allow us to catch our breath when something important goes bad.
The Universe is an asshole. You don’t have to be. Do your best to not add insult to injury and get your shit together BEFORE you need to.
Check this out, it’s all wrapped up for you with guides and checklists and shit. I’m even going to put this on the sidebar.
Clinic Day! Also, should you send me that article about ALS? (Spoiler alert: yes you should) Promising research! How my disease is progressing. And some VERY EXCITING NEWS. Like, I am nearly in tears for pretty much this entire video because I am going to lose my shit I swear to God you guys.
Last year? Boooyyyyy HOWDY was I aware of it. It struck me as poetic timing, the month after my diagnosis was Awareness Month. That’s when I really began to tell people about my own diagnosis, that’s when I made my universe aware that this was happening. I became an expert in describing what it was and why it was bad and why it was going to be okay, really.
It was a harried, confusing time for everyone, and a month of big decisions. I still hadn’t decided to sell my house yet, or wait until my symptoms made it necessary. I decided ultimately to move on the sale, thinking I’d rather have the ability to make the new house mine than stick it out. Which is good, because already it’s impossible to carry things up the stairs with both hands. I ask people to carry things for me, when they can. Even emptying the litter box and taking it downstairs is a trial. So I’m very glad I started when I did.
This May, I’m aware of ALS. I’m aware of the changes it’s made, both in my physical ability, the outlook on certain things, and the way people interact with me. I’m aware of the strength I’ve lost. I’m aware of the independence it’s taking away from me. I’m aware of the sudden burden of time, watching it slip away, wanting to do as much as I can with it while at the same time wanting to do nothing at all and just rest. I’m aware of my friends coming to terms with the disease for themselves, and either stepping up or stepping down. Both are fine. Everyone carries this weight separately, and I’m proud of people for realizing early that this is too much to carry – I’d very much rather them know this now, than force themselves to hold up until they break. And suddenly the support beam below me is gone. It’s better for both of us to realize this now. I’m aware of the amount of freakin’ PAPERWORK involved with dying. The diagnosis should really come with an administrative assistant. Danielle is helping and doing a fantastic job, but it’s not fair for her to have to deal with the bureaucracy AND the emotions.
I’m aware of changes. I’m aware that I don’t have as much time as I’d like to think. 10% of people with ALS live longer than 10 years, and I firmly believe that I will be among them, but I’m no longer so certain that I WANT to be around that long, depending on the decline.
I’m aware, and in awe, of the love and the support that came seemingly out of nowhere. I’ve never in my life been so inspired by the people around me, overwhelmed by the willingness to sacrifice for me, so many questioning voices: “How can I help?”. I’m aware of the amazing group of individuals surrounding me, each with their own talents and lives to live, but somehow willing to reach out and be part of my problem. Willingly burdening themselves with a battle they know is already lost, but wanting to make the loss a little easier.
I’m aware of how amazing my life really is. And I guess, in a fucked up way, I’m thankful for ALS showing me all of this. I’m aware of how bizarre that seems. I mean, I’d still be very very happy if it fucked off forever, but I guess if it’s gonna kill me, the least it could do was show me a little mercy and awesomeness. Most people don’t get to know how much people actually care for them, and what impact people have felt from their existence. I’ve been shown that, and told that. I’ve heard many of the lovely things people say at your funeral, while I’m still alive. And because of that, I’m very aware of the need to show people appreciation and love while you’re still around. How important it is to tell someone without prompt that you adore them and you’re glad they’re a part of your life.
I’m aware of how cheesy that sounds.
Today, I’m aware that I am a different person than I was a year ago, and will continue to change, but I will cling desperately to my optimism and humor and spit in Death’s face. Well, more of a girlyfight slappy flailing, spitting is gross. Eventually I’ll welcome her, but for now, I’m aware of so much more life that needs to be lived and so many more words to write. I’m aware of how much left there is to live.
Thank you all for being a part of it. I love you. I hope you’re aware of that.
I imagine a lot of people out there share my weekly regime of tipping pills from many bottles into little plastic containers that mark the days by day and night. Times were, I took nothing (though my recurrent anemia said I really ought to be taking iron, and my living in Oregon says some vitamin D would be good). Occasionally I’d get a wild hair and buy some supplements and taking them maybe a week or two before I tired of it. I don’t have the luxury of tiring of it and setting the pills aside anymore, so once a week, I pull many bottles off of the apothecary shelves, and count them out into little daily pods.
9 in the morning. Gabapentin (twitches/cramps), riluzole (the only ALS drug), buproprion (for depression), armodafinil (for energy), citalopram (for anxiety), ranitidine (for heartburn caused by these pills), vitamin D (for missed sunshine), coconut oil (because maybe it helps, studies are out). Usually magnesium (for muscles and nerves), but I’m out of it just now.
At 2PM, another gabapentin.
When I get home, another riluzole and buproprion. Also vitamin C, iron, and a multivitamin (because you know why). Yes that is a children’s chewable. Deal with it.
At 10PM, another gabapentin.
5 of these are to deal with effects of ALS. One is to counter the effects of the drugs I take to deal with the effects of ALS. And then supplements, because my body needs all the help it can get. So many pills, and I have never calculated how much this costs me per day. Maybe I ought to. I’d probably be afraid. And then there’s the three optionals I have; cyclobenzaprine (for really bad headaches and stress tightness), lorazepam (for when I start to freak out), and zolpidem tartrate (for when I can’t sleep). I don’t take those very often. The cyclobenzaprine (flexeril) is an emergency maneuver – I’m prone to headaches and this is for when they last for days and for fucks’ sake I just want to relax and sleep. The lorazepam (ativan) is usually taken as a preventative when I am going in to a stressful situation (why hello, legal paperwork regarding my death) or when I have panic attacks. And I’ve had the zolpidem tartrate (ambien) on prescription for ages because I sleep for SHIT. But I rarely ever take it, one bottle of 30 of them lasted me nearly 6 months. They’re also an emergency maneuver (hello, trying to fall asleep with CPAP for the first time), reactionary rather than preventative.
And there is another one out there. A possible addition to my chemical combination.
It’s called GM604. There has been a very limited trial, it’s still crazy early, but they’ve shown it to slow the progression of the disease, and even one specific trial showed a minor return of ability. As you might expect, there are a lot of people trying to get it fast-tracked through FDA approval. There’s a petition here, and a Google Group here. The company producing it is called Genervon, which sounds like something Transformers use to make new Transformers. They’ve been keeping the world aware of their progress through press releases.
At the moment, Genervon is awaiting a decision from the FDA. If they’re approved, GM604 will be available and covered by insurance. If they’re not, they must continue through Phase 3 trials, which even at an accelerated rate that the FDA has promised will still take 3 years. Which means most of the people alive with ALS today will not live to see it. There really hasn’t been enough evidence, though, that it works. There’s enough evidence to prove that they should keep studying it, and have further trials, definitely. But not enough to prove it works.
“But we QUITE LITERALLY DO NOT HAVE THE TIME TO WAIT,” says just about everyone with ALS or caretaking someone or in the Silk Circle somehow. “GIVE US THE DRUG.”
“We don’t have enough tests to prove it’s safe,” says the FDA.
“What’s it gonna do,” ALS peeps say, “kill us!?”
And so the world waits. Maybe this is a miracle drug. It’s certainly not a cure, but it may be a substantial step.
Next stop: someone stealing the formula from Genervon and producing it in Mexico. Cue many, many ALS peeps taking vacations in Mexico. Because they just want to live awhile longer and will risk anything to get it. Their life is literally on the line.
I don’t know how I feel about it either way, to be honest. My progression might be slow enough that I’ll live to see the results of that trial. But I also fully identify with wanting to take a chance, if it means more time. More ability. More quality of shortened life. I’ve already said I would participate in trials, and I meant it. If I can create clinical data for this drug by taking it and checking in with doctors, sign me up. If it kills me faster, well, now you have a data point. And if it doesn’t, you also have a data point. From a medical trial standpoint, you win either way. From my standpoint, I might come out better than I went in. Or I might die, which I was going to do anyway. I definitely want to see more testing. Either controlled by the FDA or released into the wild and see what happens.
I’m excited that there is SOMETHING happening, in any case. Even if it’s potentially one more pill in my cases.
I’ve gone on and on before about how grateful I am for the support I’ve gotten, how much I appreciate the support I’ve been given, how blown away at the love I’ve been shown. It’s probably become a little bit tiresome.
Well, suck it. There’s a lot more coming.
I admit I totally got press-ganged into doing the Walk in the first place. The Veterans Resource Group had a table in the cafe at work. I stopped by to chat, and met another person who ALSO had ALS for the first time. (I’ve met a fair few since then. We’re a small crew, but we run – or hobble or ride – in the same circles.) Part of the table’s purpose, besides awareness, was to recruit people for the Walk to Defeat ALS. “You should form a team,” I was told. “I bet you’d get a lot of support.”
I was of two opinions on that. On the one hand, it’s asking for something. I’m not good at that. On the other hand, a tiny irrational fear, ‘what if I form a team and no one shows up?’ While I was debating this in my head, a coworker walked up to the table to see what I was up to.
“Vashti’s making a walk team, do you want to join her?”
He looked at me, “You are?”
And that’s how it started. I put up a poster outside my cube, I wore the red wristband, I talked openly and honestly about the diagnosis when I was asked, but I felt really weird about asking my friends to come over in support of me. I caved and asked my friends to help me name the team at least. We had a lot of really good suggestions, but in the end, The Godzilla Squad won out. On the 16th, I posted my team link.
On the 17th of August – the next DAY, for those of you playing at home – I was at 17 members and over $1000 raised.
To say I was overwhelmed is a gross understatement. So, fun fact! I’d never cried for joy before. I always thought it would be kind of cool if something like that happened to me, but I am not sentimental in the right ways, I guess, so it never happened. Until then.
The Ice Bucket Challenge gained serious momentum, and so did my team. On the 26th, I was at $3k and 26 people. A dear friend of mine in Sacramento also started a team in my name, Team Dinsdale. We met online waaaaaaaaaayyyyyyyy back in the day, before the Internet was a thing, when you had to dial directly in to someone’s computer and leave messages on a digital bulletin board. In the BBS days, my first handle was Dinsdale.
Life continued its usual frantic pace, there was a lot happening, and before I knew it, it was the final weekend. I had four people staying at my house to attend, and one flew in from Sacramento to be here for me. I was spoiled absolutely ROTTEN that weekend, with homemade Ethiopian food of amazingness, fancyface ice cream and donuts for dessert, and the best company a girl could ever ask for.
And then, Walk Day. This is my team:
Amazing people, every one.
We gathered in a spot that was strategic and awesome until the live band started playing. Right. Bloody. There. But we were VERY easily distinguishable in the crowd with the hoodies (OMG SO AMAZING LEENDAH I LOVE YOU) and Danielle, my main babe, had printed out the kitten-vs-Godzilla picture I’d been using for my Walk page, and attached them to an umbrella. And Matt. Oh my golly Matt. He had commissioned a mighty cape of DOOM and a head cover for his staff:
IS THAT NOT AWESOME.
Yes of course it is, don’t even bother answering.
There were a LOT of people there. Oh my god so many. I’m really glad I had my team around me so I was constantly distracted by OH MY GOD HI I HAVEN’T SEEN YOU IN FOREVER instead of ..holy crap I am in the biggest of big crowds and this sucks. We borrowed wheelchairs,Danielle and I, because I can walk a mile, but it sucks, and I think three is out of the question. Danielle had to borrow one because her foot is borked and it hurts her a lot to be on her feet at ALL and walking three miles is similarly out of the question.
It was a FANTASTIC walk. Well. Roll. I got pushed. The chair was surprisingly easy to wheel myself around in, but I had a lot of people willing to help me out. There’d been cold and rain suddenly, but it cleared up in time to be LOVELY for the walk day. Even a little too warm to wear the hoodies all day, for they were made of fleece and are SO COMFY AND WARM but maybe not the best when standing for a while in direct sunlight. Megan was the smart one, she held the umbrella. Some surprise faces showed up – I didn’t expect my older brother there, he told me he had to work but then didn’t have to! – and met a couple new friend-of-friend faces and did not at ALL have time to introduce everybody to everybody. We walked a really pleasant stroll along the waterfront, and groups connected and drifted as we walked.
We finished, exultant, and some of us stayed for a picnic, and some of us had to get back on the road.
I am so. so. so incredibly grateful. I am grateful to everyone who came. Everyone who couldn’t come but donated. Everyone who couldn’t come OR donate, but thought about me.
In the end, my team was 49 members strong, more than 35 of whom showed up to walk, and $5460 raised.
I’ve always strived to be the kind of person someone would care deeply about, and like having around. I …I guess I managed that, if the support and love I’ve been shown is ANY kind of indicator.
I love you all. You’re amazing and the world is lucky to have you in it.
Longer post to come. But I am so, so grateful to everyone that came out to show me love and support today. So grateful to those that could not but wanted to. So grateful to everyone everywhere who ever gave a shit about another human being. I am so glad to be alive and in such excellent company.
The Ice Bucket Challenge was amazing in bringing awareness about ALS to the general public. It’s gotten to the point now where when I say ALS, there might be a reaction, and I don’t have to continue, “..Lou Gehrig’s?” People are starting to know what ALS is. And that’s WONDERFUL.
But we’ve still got a way to go.
I am looking forward to a time when someone asks what’s wrong, I say ALS, and there is complete understanding. Not just “oh that’s pretty bad, isn’t it?” but “Oh, this is terminal, I’m so sorry.” It would spare me so many awkward conversations about treatment prospects and recovery times. There’s no gentle way to say, “There is no treatment. This is a death sentence.” It’s hard to drop that on someone and tell them that you’re okay, honestly, in the next breath. “I’m going to die. But it’s okay.”
It would be so much easier if they understood the implications already so that I can be spared giving people tidings of death with every conversation about my disease. Not just the mortality part, but the whole gradually becoming stuck in a meat shell until I suffocate part. It would spare so much awkwardness. I can’t even imagine someone having one of these superficial conversations with me, learning I have ALS, and then Googling it later and HOLY SWEET MOTHER OF GOD THIS IS AWFUL IF I HAD KNOWN I WOULD HAVE BEEN SO MUCH MORE SYMPATHETIC OH GOD SHE PROBABLY THINKS I’M THE MOST UNFEELING PERSON EVER. (I don’t. I promise.) But the alternative is unlimited conversations like this:
“Hi, how are you?”
“I’m going to die horribly, thanks, but otherwise grand. How are you?”
Okay, so: story time!
I ran into a coworker in the hall a little bit ago. He’s not with my group, but he works on my floor so I see him a lot. Really nice guy, though we got off to a rough start – we met in an argument over who had booked a conference room (I did! And I proved it!) and he was really bitter and snarky at us even though I GAVE him the room and we just found another one. But he had the good grace to make a point of finding me later to apologize and explain that he was really frustrated with getting kicked out of rooms a lot that day because I guess his admin sucked and didn’t actually reserve ANYTHING. But he was sorry he took it out on me. And we’ve been happy acquaintances since.
…Anyway. He stopped me in the hallway and asked me how I was doing. It was a genuine, “How are you?”, instead of the generic “How are you” that you pray to God the other person will just superficially say “Fine! You?” and you both can go about your day. He was actually concerned, and I was a little confused because we hadn’t talked about my disease before – had he seen the spot on the news?
“I’m good,” I answered him honestly. “Doing alright.”
He voiced that he had seen my walking kind of deteriorating and was wondering if I was okay.
“Ah, that. Well, I have ALS.”
There was a little bit of recognition there, and he sympathetically told me, “I’m sorry to hear that.”
“Thank you. But I’m doing okay.”
“So it’s a progressive thing?”
“Yep, someday I’ll be in a wheelchair.” I shrugged.
“Oh. Is it hereditary?”
“Sometimes. Not with me, but 10% of cases. Usually it just comes out of the blue.”
He was sympathetic, nodding.
“But nothing hurts,” I continued. “I’m doing okay. I’ll be working as long as I can.”
We’d reached the end of the hallway where our paths split. He gave me a warm smile and said, “Please let me know if I can help you in any way.” And he meant it.
I was touched. “..Thank you, I will.”
He turned to go, and said in farewell. “Well, I hope you feel better.”
I had the second talk today, for Intel employees. I mentioned the talks briefly before, but lemme recap.
The leader of the Veterans’ Resource Group here where I work contacted me to see if I’d be willing to help. Veterans are twice as likely to get ALS and we don’t know why yet, so they’ve dedicated this quarter to raising awareness. Part of that awareness campaign was two scheduled events where they brought out the technology available to assist ALS patients, tried to drum up support for the Walk to Defeat ALS, and talked about ALS in general. He asked if I’d be willing to just give a short talk about my diagnosis, how it came to be, and how technology has come into play. I came to his attention because of the news story on voice banking, and he thought that was a wonderful way to introduce ALS to Intel folks – apparently I am the only Intel employee currently working, who has ALS. He asked if I’d share my story. Of course I said yes, no big deal.
I thought a lot about what to say. I didn’t want to just stand up there and talk about my diagnosis. I didn’t even really want to talk about myself much, except to say, this is what ALS is, and if you have any questions at all about what it’s like, or how you get diagnosed, or anything, please ask, because I want people to know this stuff. There’s a lot of misinformation out there, and most of the information that is correct is cold and clinical, hard to put a face on. And I didn’t want to be a Sally Struthers pity party campaign of DON’T YOU FEEL AWFUL LOOK AT THIS HORRIBLE STUFF YOU SHOULD GIVE US MONEY AND FEEL BAD.
And so instead I talked about the tech. Both times, I didn’t manage to stay on script, but this is more or less what I said. And I wanted to share it here, because it’s valid and important to me.
After a 6 month chase including MRIs, a spinal tap, a biopsy, and several impressions of an electric voodoo doll, I was finally diagnosed with ALS. (As it was stated) ALS is also called Lou Gehrig’s disease, after a then-famous baseball player gave a speech telling America that he considered himself the luckiest man alive.
That April 1st, as I sat in the neurologists office and tried to process the news, the first thought in my head was not that I felt particularly lucky. The first thought was actually, “I have to wait until tomorrow to tell people, because NO ONE is going to believe me when I call them on April Fools’ Day to tell them I have a terminal disease.” And my second thought was, “Ok, now what.”
Some people interpret this as courage; I think it’s actually closer to pragmatism. If anything, working here has honed my natural ability to deal with crises with grace. I *can’t* panic; I’ve suddenly lost the luxury of time, and in less than a year I went from perfectly healthy to planning advance directives and making decisions about feeding tubes and ventilators. And it’s become a full time job figuring out how the heck am I going to AFFORD all of this. Dying of ALS is a very expensive endeavor in the States. There’s all of the mobility equipment I’m going to eventually need, there’s the two story house I had bought a handful of months before I was diagnosed that now has to be sold because stairs are becoming impossible. There’s going to be hospice care, and figuring out who I can rely on to get me to medical appointments.
And even more stressful that figuring out money, I have to tell a lot of people about my diagnosis. When a coworker asks if I’m limping because I’ve hurt myself, I have to tell them why I’m limping, and I find more often than not that it usually entails an explanation of what ALS even IS. When I told people of my diagnosis, while their first reaction is always “I’m sorry” – which feels lame to you? But it helps, it really, truly does – the SECOND thing out of everyone’s mouth is always some variant of: “What can I do to help.” I have never realized how many amazing people are in my life. When I was diagnosed, I knew I’d need someone to lead my care team when I couldn’t, and when I looked up, my best friend had her bags already packed and checklists in hand. When I realized that it’s become so much more difficult to do the simplest things like go to the store, I have a plethora of people offering to take me. My little brother moved his entire family from California to be here for me. Casual acquaintances have become friends. And my coworkers have become my invaluable allies.
I have the very good fortune to be working here at Intel. Our benefits are actually really good, especially when you compare them to the nightmare that is Medicaid. And most importantly? The people I work with are an incredible asset. You have two things we really need if we’re going to defeat this stupid disease. First? I’ll be honest, …we need your money. Research takes money to fund, and did I mention how expensive having ALS is? But second, and probably most importantly, you have intelligence and innovation. If you look at the tech available to make living with ALS easier, and compare it to what is POSSIBLE, you’ll see an almost comical shortfall. Eye gaze tech allows ALS patients to use a computer after their ability to move has gone, but it costs thousands and thousands of dollars, and the best stuff isn’t covered under insurance. There is good technology available, and there’s AMAZING technology POSSIBLE. And you’re just the people to help us push this tech to the next generation and make it available to everyone that needs it, not just those that can afford it.
Ever since that April diagnosis I have been shown time and again that I am completely surrounded by people who are willing and able to make this disease suck less – for myself and every other person with ALS.
And because of that, I realize that I am actually very, very lucky.
The interview I did aired last night; I sat in my living room with my brother and his wife and watched it streaming off his laptop to my television. I guess I didn’t look TOO stupid. She mispronounced my name, but it was otherwise a really good story and I’m happy I was a part of it.
So now the two of you who read this who don’t already know me personally know what I look and sound like. XD
I came in to work this morning to an email from a coworker:
I saw the story on KPDX regarding your diagnosis of ALS and the preparations for your future with this disease and wanted to reach out. I am the Employee Resource Group leader here in Oregon for the American Veterans ERG. If you were not aware, American Military members are twice as likely to contract ALS as the general population. The cause is yet unknown. Due to this connection between veterans and ALS, my ERG is using Q3 to promote ALS awareness here in Oregon.
I was reaching out to you to see if you would be interested in being involved in this event. I would love to be able to meet with you and talk to you about what we are planning to do in regards to raising awareness here at Intel. Feel free to call or email anytime so that we could arrange a meeting if you are interested in doing so.
I told him I’d be happy to be involved. I hope we figure out what the hell that correlation is someday, because yeah. Vets and ALS. Such a strange and scary statistic.
My facebook has been blowing up today, all kinds of people linking that video and tagging me, and SO MUCH SUPPORT and encouragement from those I love. Every day I learn how well I’m loved.
Hooray for getting more people aware of this stuff, and hooray for it being OVER so I can stop being nervous about it. Heh. “When she’s not baking, she’s banking.” I SEE WHAT YOU DID THERE, NEWS PERSON.