Category: Support Network

The Followup

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I had my followup with Dr. Goslin today. I had some questions for her, and I wanted her to meet my brother Gecko and my will-be-primary-caretaker and best friend Danielle. Gecko unfortunately couldn’t make it because the poor bastard got a migraine this morning. Suck.

I went in expecting to be taken off the prednisone, I haven’t noticed any change at all except in my weight. I’m all pooufeeh. She did the standard pushme-pullyu battery of tests, and then a little bit of EMG. She decided that I’ve actually gained a little (liiiiiittttle) bit of strength. There was a nerve signal she caught slightly today that she wasn’t able to get at all before. We’re going to keep me on the prednisone for another month, and if there’s another increase, then we’ll discuss more permanent treatment along that line, because prednisone forever is not an option. She not only told me not to worry about the weight gain, but that it’s GOOD that I have some extra weight. People who are a bit overweight tend to last longer, she said. And I’ve already got a slow progression going for me, so….keep that up.

So not only doctor permission to not lose weight, but an active advisement AGAINST it.

Now’s the time you kinda wish you were me.

We talked about familial ALS versus spontaneous, and she told me that there’s increasing evidence that a larger portion of ALS patients have familial ALS than the 10% everyone thought. There is a lot of research being done towards this, and that’s also where a lot of clinical trials are. Our next step is to get approval from my insurance company to get the genetic test that will show if I’ve got those markers or not, and thus make me a good candidate to participate in all the exciting things going on. I don’t think my insurance will turn it down.

We’re also going to start me on Riluzole. Because taking 8 pills a day wasn’t enough. But also mostly to see how well I tolerate it. Because it’s known to do SOMETHING, and if it’s not going to hurt me, then why the hell not. We did some baseline blood work today to measure against potential liver damage down the road, and we’ll see if I get nasty side effects that make the potential extra 6 months not worth it. I don’t wanna have 6 more months of feeding tubes and ventilators if I spend my whole life up to that point feeling nauseous.

ALSO I have an appointment in 3 months to attend an ALS clinic. Mostly to get a feel for how they work, and also baselining and meeting all of the key players in the medical soap opera that is becoming my life. That will be in August. I’m really curious about it.

I forgot to talk to her, but emailed later and discussed that way, about anxiety. I don’t want to be on a maintenance drug for it. At all. Most of the time I’m handling everything just fine. But there are some nights I need a little hand. Usually when I’m trying to think about something really important that I NEED to be thinking about. Like advance directive. I’ll sit and think about it and my brain suddenly goes all staticky and KRRRRSSSSSSSSSSSSSSSSSSSSH and then I either have a panic attack or my mind goes OMG KITTENS AND STICKERS AND SUNSHINE YAY and thinks about literally ANYTHING ELSE. So I told her it’d be nice to have a hand with that, sometimes. She suggested ativan, which I’m leery of because it can be habit forming and makes you sleepy more than just calm.

And then she said, “Medical marijuana can certainly help with anxiety and there are many non-smoking forms of it if you wanted to try that.”

..I have a lot of complicated feelings about pot. Mostly negative. I’ll be posting about that allllllll on its own. I’d be lying if I said I hadn’t thought about it, though – I’d actually mentioned it offhand before to her because I’d thought about giving it a shot for my chronic headaches, before. But yeah. I need to figure some things out. In the meantime, I have a few ativan prescribed to me. I don’t have work tomorrow, and no appointment until 1PM, so I’ll probably take one tonight and see if I can work on advance directive stuff.

So that’s where we are at with the stuff. Tomorrow is my followup physical therapy/orthotic appointment to see how I’ve been dealing with the braces (awesomely). And now you are up to date.

An Unnecessary Secret

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I don’t care who knows I have ALS.

Just putting that out there.

I’ve had more than one person, upon learning about my diagnosis, “Don’t worry, I won’t tell anyone.” …Why the fuck should I worry about you telling someone? Tell everyone, I don’t give a shit. It’s not a dirty secret, it’s nothing bad that I did. I’m not ashamed of this. ALS does not diminish me in any way, it just means there’s some shit I can’t do so easily anymore, and someday I won’t be able to do it at all. So what.

And in some cases, it’s easier for me if you DO know. It’s better that my coworkers know what the hell is going on, so that they don’t think I’m snubbing them when I’m invited along for the 3PM team walk for beverages and exercise. I adore being included in this kind of stuff, and I worry about being seen as aloof when I repeatedly decline. If they know that I have ALS, then they realize that no, going on a walk isn’t going to happen, but hey, invites after work for beer and hangouts is lovely (even though beer is gross and tastes like gasoline and rotten wheat). Knowing that I’ve got this stupid thing going on means that when planning team building events, mayyyyybe make sure there’s something for me to do while waiting for you guys when you’re ziplining. That’s all.

Nearly everyone I’ve told about this has behaved like I’ve entrusted them with a secret. It’s not a secret, it’s as much a part of me now as the color of my skin or my favorite flavor of ice cream or my height. For most everything, the fact that I have ALS doesn’t mean a goddamned thing. But it’s not going to make a difference to me if you’re aware of it. It’s a part of who I am, and some circumstances need to take it into consideration, but it’s only as big a deal as you choose to make it. Not everyone cares about my favorite kind of cake, but some people might. Not everyone needs to know my sexuality, but it’s a part of me and I’m not ashamed of it. I’m not going to apologize or make excuses for having ALS any more than I’m going to make excuses or apologize for having some of the music on my iPod that I do. (Screw you, guilty pleasure music is still pleasure. I like Michael Jackson as much as Tool. O-Zone gets as much play as Bastille. My-ya-HIIII!) I have tattoos, I have ALS. I chose the former, the latter chose me. But they’re still very much a part of me now and nothing I need to keep secret.

I guess they’re worried on my behalf that people will treat me differently. This is something of a concern, because I’ve already had people deciding for themselves what I am and am not capable of – another post for another time – but I’m more than happy to show people for myself what I can do. This shit is not going to break me, and y’all fuckers need to recognize that. I’m not afraid of people seeing me as suddenly handicapped, I’m afraid of people misinterpreting my physical limitations for disinterest. I’m afraid of not being able to speak freely and openly about what’s happening to me because people feel like this is something that should be buried. I feel like I should be able to ask to be dropped off at the door rather than walking a quarter mile across the very full parking lot without it becoming this huge THING. I want to be able to tell my coworkers WHY I have had a million instances of being late or leaving early from work. I’m not skiving off work, I promise, I’ve just got a bazillion medical appointments.

So, so many medical appointments.

It’s not a secret. I don’t care who knows. It’s nothing I did, nothing I can control, nothing I’m ashamed of, nothing I’m worried about people changing their perception of me. I WANT people to have a different perception of me. The perception of some girl who’s not gonna let this shit beat her. Take a seat, darlings, and watch me work. Feel free to talk amongst yourselves.

And when the new guy shows up late to the party, feel free to tell him what’s going on.

Liste du Bucquette

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I have a complicated relationship with the idea of a bucket list.

Okay, so, first? The name ‘bucket list’ kind of bugs me. I can’t really pinpoint why. It feels a little disrespectful, I think, but that doesn’t make sense as I am PERFECTLY willing to make all kinds of jokes about my condition and I’m notorious for not taking it as seriously as some people might like. Maybe it just feels a bit…man, I don’t know. Whatever.

Everyone seems to assume that the moment you are told you’re terminal, the first thing you do (after you cry a lot) is run out and make a list of things you want to do before that happens and start working to check things off. I’ve had a LOT of questions about the sort of things on my bucket list. But here’s the thing – I DID NOT HAVE ONE. I did not immediately start figuring out what life experiences I wanted to have before I died, I was FAR too busy figuring out how I’m going to LIVE. I have a lot of plans to make, and I’m still dealing with that whole “my life is suddenly very finite” idea. Figuring out grand adventures was honestly the absolute last thing on my mind. I had research to do, and people to tell, and disability to work on, and medical appointments to go to, and a house full of chaos besides. I have no time at work to think about these things. The idea of setting aside some time specifically to think about “what would I like to do before I die” is bizarre to me, and I’m not the sort of person who thinks about that as a matter of course. A lot of people have some vague idea, or have that one thing they want to accomplish – my main babe Danielle wants to see Australia, badly. I didn’t ever really have things like that. There’s been a lot of “this would be really cool to see” but there’s never been a primal PULL to accomplish anything before I die. Nothing I need to have done so I can consider mine a life well-lived.

The idea of a bucket list has brought up another major point: I really suck at accepting nice things. Whether it’s a compliment or an extravagant gift, I am easily overwhelmed and hesitant to accept. It’s likely a combination of growing up extraordinarily poor and having crushingly low self-esteem for most of my life (and still, to a large extent). There’s a large dose of “I don’t feel like I deserve this”. There’s a large part of “there are other people who definitely deserve this more than I do.” So when people have asked to help make some bucket list items come true, I’m like a deer in headlights. One friend has offered to fly me to Maryland to see her and then daytrip to New York for an honest to God Broadway show and fancy dinner. Another was asking how I’d feel about an international trip, because she is totally willing to take me on one, do I have a passport? And I’m overwhelmed. Because that’s a lot of money. A lot. More than I would probably ever justify spending on myself, even if I had it. So I’m very tempted – it is in my NATURE – to politely decline.

My friends know me very well though, and I was preemptively asked to consider their position. They have a friend who is dying, they want to make one good memory with her before that happens. And they have the means to make it an extravagant memory. So that, when she dies, they have no regrets over time lost and opportunities wasted. Do I really want to deny them that? Won’t I consider how they feel, and realize this is as much about them as it is about me?

…And I can’t fault that. If it were anyone but me, I’d totally be on board, I get it. But being on the receiving end of that feels strange.

I certainly don’t feel like I deserve magical golden presents. And though I’d love to see Italy and Japan and New York, it’s not likely that I’d travel there, even if I had the rest of my natural lifespan. So why do I suddenly get the option to do these things just because I’m going to die sooner? Why does ALS equal a ticket to New York when there wasn’t going to be a ticket to New York in my future otherwise? How does THAT work? Consolation prize? SORRY ABOUT THE SLOW DEATH, HAVE SOME PASTA IN ITALY.

There’s also a battle within me of pragmatism. Part of me wants grand adventures, yes, but there’s a large part of me that just kinda…wants to continue to live life normally. Take a vacation occasionally, sure. But nothing so extravagant. And otherwise stay the course. Go to work. Be as normal as possible for as long as possible. Maybe that’s a form of denial, but ALS has already completely disrupted my life and I feel like I need to mitigate that disruption. So, suddenly becoming a jetsetter is weird for that reason, too.

So no, I didn’t really have a bucket list. I was given that as a homework assignment Wednesday, and whaddyaknow, there’s a website for it. So I made one, and I’m continuing to add to it. I was told specifically to only include fun things. “sell the house” and “work out disability benefits” do not go on that list; there’s a separate ‘shit I gotta get done’ list for that stuff. This was to be a list of everything I can think of that would be awesome to see/do/make/have before shuffling off this mortal coil, no matter how unlikely. So, here it is so far:

http://bucketlist.org/list/tragerstreit/

I’ll keep adding to it as I think of things. It’s a work in progress; it’s hard to think about this for too long without spiraling down, for one, and there’s so so so much cool stuff to do, how do I figure out what should be on this list? The next step will be to figure out what’s actually feasible, and then sort that smaller list in order of physical demand so I can do that shit first, before it becomes too problematic. I was told I should make that list public, so that friends of mine could sign up to be buddies for adventures – like, “You want to go to Yellowstone? Awesome! I do, too! I’ll go with you and that way it’s definitely going to happen!” And they can choose the events that would be most meaningful to them to participate in. Not everyone gives a shit about being there when I get a tattoo, but for other people that might be a meaningful moment to share with me. Maybe one of my friends has also always wanted to learn how to pin insects.

Annnnnnnnnd then there’s the idea that’s been floated by me by a few friends of putting up some kind of donation thing, so that friends can outright sponsor a bucket list item, or donate towards one. And that also feels weird. Again, there’s the “I’m not worthy” part, and there’s a chunk of “your money could be spent making YOUR life more awesome, you should do that” or “ALS research needs the money more than I need a new tattoo”. But it’s not about ALS research, or potential vacations, or any of that. It’s about the crushing sense of helplessness they feel, and this is one thing they can do. Something solid. Something concrete. Something that makes their friend’s life a little brighter for as long as she continues to have it.

Mehhhhhhhhhhhhhh if I keep talking maybe I’ll convince myself. I’m still not buying it. I’m hardwired not to. I’m trying to be more gracious about accepting help when I need it. I’m trying to teach myself to see that accepting these happy things will make me better at accepting help for the not happy things. If I can get over myself and accept a trip to NYC, I can get over myself and accept a hand taking a shower later.

But overall, I am grateful. So, so grateful, that I have friends who want to do these things for me. I’m grateful to the universe that they’re in a position to be able to. They’re lovely people, and I’m glad they’re doing well. I’m grateful that these people were put in my reality and that they remained in my orbit. And I’m overwhelmed with the love and support everyone’s shown me in their enthusiasm to make this list happen.

I know the best, most awesome, most generous, most loving people. And I adore them. I am a lucky girl.

Care and Feeding of Your Center Circle

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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.

tl;dr:

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

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

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

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.

Can We Talk About This?

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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.

I NEEDED TO TALK TO FAMILY ABOUT THIS SHIT TO MAKE SURE YOU FUCKERS KNOW WHAT I WANT IF THE WORST HAPPENS AND I WOULD RATHER HAVE HAD THOSE CONVERSATIONS *THEN*.

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?”

“GOD WILL FIX THIS.”

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

“SHE HAS FAITH IN THE LORD JESUS OUR SAVIOR.”

“Well, she’s about to meet Him.”

Beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.

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:

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

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

Mom:
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

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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.

tragerstreitLeave a comment

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.