Tag: I have the best friends

Not My Husband

tragerstreit2 Comments

We pulled up to the parking lot, slid into the disabled spot, and J activated the ramp. (Common. Rote. Standard.) He unfastened all of the tiedowns connecting my chair to the vehicle, and stepped back so that I could navigate my exit. (As usual. Like always.)

This time however, we had a witness. I mean, we often have a witness – the van makes a lot of noise when it deploys the ramp and the sounds tends to attract gazes. This witness was just vocal. (Uncommon. Nonstandard. Weird.) Our witness that night was parked beside us and made herself known by exclaiming how wonderful the van was and how lucky I was to have it. It was so cool, she said, the way I could just drive my chair right up inside and park up front. I agreed with her, of course; commenting on the marvelous freedom it affords me, and we spoke for a little while about how it was important to me that I was able to ride alongside the driver seat and not have a rear entrance van – making me effectively cargo. We spoke also about the minor problems I have had with said van (this was before the brakes melted), about the lengths I went to in order to purchase it in the first place, but mainly we had a pleasant chat about the marvel of modern engineering that this man was and how much freedom it afforded me. She then turned to J, beaming, “and you’re so lucky to have a good husband to help you.”

…We get that a lot.

I didn’t correct her. We never do.

To be fair, he used to be my husband. Now he’s my best friend. Because of that, there is a very easy intimacy between us, a lack of distance that typically exists even with the closest friendships. He hugs me a lot, we have excellent non-verbal communication between us, and it’s easy for an outsider to mistake our relationship for that of a married couple. We live in a touch-starved society, and here is this guy who can so casually rub my shoulders or hold my hand when I am in an emotional crisis, who is cutting my food for me and escorting me everywhere, so OBVIOUSLY he must be my husband, right?

But yes, I agreed – I am so incredibly lucky to have him.

I am jealous of people who get diagnosed with ALS who have a spouse, if I’m being fair and honest with myself. Although intellectually I understand that no relationship is guaranteed, and sometimes marriages don’t last through a terminal disease, most of them do. Till death did they part. Having someone that intimate with you, that connected with you, and consistently present for you – I am so incredibly jealous of that. You have a built-in partner through all of this bullshit. Not a guaranteed slave at your beck and call or anything, but the security of having someone who will of course be there to fetch you a glass of water when you need it, to help you to the toilet when you’re at that point of helplessness.

((I absolutely know to the core of me that if I had been married when I was diagnosed, I would totally have given my partner the option to walk away forever and pursue a different life without dealing with me dying – even though I know there’s no way they ever would. Probably. I gave all of my friends the same option. Some of them took it, but most of them didn’t. Dealing with a terminal disease sucks for everyone.))

Even though your primary medical caregiver should never be your spouse, there is a lot of automatic care that is assumed with being married to someone with a complicated disease. I don’t have that built-in automatic assurance. I don’t have someone sleeping in the bed beside me who can help me turn over at 3 AM. I don’t have someone sharing the same space as me to whom I can turn for petty little things and I do not mind asking, because they are already around and the thing I need is so minor. Instead, I live with my blind mother who can’t tend to a lot of those stupid little things I’d like done, such as to open the window blinds for me or light a candle or move these five books to a different bookshelf. It’s kind of a major undertaking for her, and impossible for me. I can call her into the room to take a dish away, but I’m lacking someone who would be sitting beside me anyway and would automatically be taking my dish with his or hers. A built-in partner to help me navigate all the fuckery.

What I do have however, is this amazing human being who has stepped up to provide a lot of the day-to-day shit that needs doing, without needing to be asked. When my planned caregiver left me, J stepped in with no complaint and an easy grace. And I am very very lucky in that, since we used to be married, I am very comfortable with him and have a built-in intimacy that I simply don’t have with any of the rest of my friends. I’m not embarrassed at the end of the day when he drops me off at my apartment to ask him to unhook my bra for me before he leaves because it’s very simple for him to do, very very difficult for me to do, and the dude has seen me naked a lot so who even cares. Eventually I won’t have a choice but to develop the same intimacy with us a lot of people, be they friends or paid caregivers. But for now, he is the one I turned to when I woke up in the middle of the night and couldn’t get out of bed to pee fast enough and suddenly needed someone to change my sheets. After I spent the rest of the night sleeping on a towel because it was 4am for fuck’s sake. I was embarrassed to ask, of course; it’s not an easy thing to tell another human being that you, a grown-ass woman, wet the bed last night so thank God for mattress protectors but could you please change my bed for me? But since he is my ex-husband, that intimacy already exists to a certain level (I mean, the man held a bloody barf bag for me after I had post-tonsillectomy nausea soooooooo everything else is easy-peasy after that, surely), and it was very organic for us to slide into this new development together. It is much easier to admit weakness to someone who has lived with you for 10 years and seeing you already go through some serious shit. We survived divorce; dealing with this terminal disease together is practically a piece of cake compared to that.

I am so lucky to have him.

I love him more than… Probably every other human being on this planet if I’m being honest. He is the best one.

As of this last Valentine’s Day, it was 10 years ago we were married. I’ve known him nearly 20. He is my best friend, my primary caregiver, my confidant, my buddy, my chauffeur, my personal assistant, my first and true love. I am a very, very lucky woman to have him in my life, to have been able to maintain this level of friendship even after our romantic relationship fell apart. I personally don’t understand being able to have an intimate relationship with someone for 10 years of your life, and then just walk away from it when that relationship goes wrong and never speak to that person again. It’s unfathomable to me. Literally no one on this planet knows me as well as he does. Not everyone can do that though, let go of the sense of failure and hurt and maintain a positive relationship afterwards. For me though, there was literally no other option. Even though the romance part of it didn’t work out, I love him to the ends of the earth and with every fiber of my being. That love is just different now.

I guess what I’m trying to say is that J is pretty neat. I like him a lot.

I just felt like I should state that for the record.

Repose

tragerstreit3 Comments

My friend and insanely talented artist and compassionate person Tamara owns a cute shop/art gallery called Redux here in Portland. She occasionally has art shows at Redux, and occasionally those gallery shows are to benefit a good cause, like for the Cat Adoption Team. She asked if I would be interested in in a show she was planning about Death Positivity. I said OH HELL YES PLEASE. She asked if I would mind it being a benefit for the ALS Association. I was all kinds of verklempt and said I thought that would be amazing. She asked if I would like to read something at the show. I said I would be honored, and I would try. This is what I wrote, and what I read tonight.

There’s a lot they don’t tell you about dying. I mean, it’s not as if terminal diagnoses come with any kind of handbook to begin with, but there are a few things one usually expects, typically to do with your specific disease. Spoiler alert: with ALS you stop being able to walk really well, or at all. You may also expect to lose the ability to speak and swallow. They tell you what kind of trajectory your disease is probably going to take, and they can usually give you some form of a timeline.

No one tells you though, how profoundly, emotionally tiring it is. I had to learn that on my own. There is a physical exhaustion that typically comes with whatever ails you, of course; hell, it’s usually one of the symptoms that told you something was wrong to begin with. But no one can properly prepare you for how soul crushingly exhausting the whole business of dying is. How the psychological process of navigating your own death saps what little energy you have to fight the physical troubles before you. How…lonely, this whole business is.

Here’s something else I had to learn for myself: it absolutely doesn’t have to be.

This is a hell of our own devising.

It’s a hell born of ignorance, paranoia, and good intention. It’s a hell that comes in slices, tiny slices of death denial force fed to us from a young age. When adults use phrases like “gone to sleep” or “gone to Heaven” to explain why Grandma isn’t going to be coming over for Christmas this year. When our beloved old pet goes to some imaginary farm to live out their twilight years. When we get older, and we learn what death is, hell is fed to us in new rules: you’re not allowed to say DEAD. Ever. They have gone to the Lord, or passed away. It’s not a dead body laid out in a coffin, their earthly remains lie…in repose. In an obscenely expensive burial chamber. Undertakers become funeral directors, graves become memorial sites, corpses become our dearly departed. A whole lexicon of mortality is denied to us, with harsh social consequence if we ever dare say BURIED instead of “laid to rest”. We cheerfully eat this poison, we send ourselves into fits of delusional paranoia as though merely mentioning someone is dead is some sort of invitation for disaster, to brush death under the carpet and never talk about it in polite company. As a society we have decided that this is healthy behavior.

But it isn’t.

Because let me tell you, this culture of death denial makes it REALLY, REALLY HARD to *be* dying. It is impossible to deal with the practicalities of the matter when no one will say it out loud. Any time you mention the D Word, you get uncomfortable silence and furtive glances and abrupt subject changes, or you get laughter and even more obvious subject changes. People are so worried about offending my delicate feelings that I am not allowed to express those feelings at all. Some have swallowed the belief that if you don’t talk about it, it magically can’t happen, or the other inane idea that thinking positive will fix everything! OH SHUSH DON’T TALK LIKE THAT THEY ARE GOING TO CURE THIS YOU WILL SEE – THE ICE BUCKETS WERE MAGIC. THOUGHTS AND PRAYERS ARE PANACEA. SHUT UP WITH YOUR DEPRESSING DEATH TALK. It is profoundly frustrating. It makes it difficult to plan what’s to become of my cats, or ask what earthly possessions would someone like to have, if they just hand wave and assure you that you have plenty of time to think about it. Later. Much later. Or never. That works too. Let’s deny that any of this is happening and just spend time together ok? Without talking about ..you know. It’s just so…morbid.

Instead, you’re expected to shut up about it, and bottle it up, and in the end you’ve spent your last days spiritually exhausted from having to pretend you’re not dying all while secretly dealing with all the emotional, physical, and bureaucratic nightmare of actually dying. And then of course it’s too late for those conversations, you’re capital D-Dead and all of your favorite things go to some charity or yard sale instead of the people who might cherish them for their history and their sentiment. Your stuff in the garbage, instead of a friend’s home, your social media accounts deleted instead of put in memorium, memories gone forever and your favorite dishes gone to your greedy aunt who will be selling them off for profit instead of your collector friend who’d actually appreciate and use them for what they are, and love them for whose they were. The letters you carefully wrote as goodbyes tossed into the recycling instead of delivered because you couldn’t tell anyone where they were. Who you are, your legacy, written over without your control or input simply because no one could look you in the eye and say “You are dying and that sucks, and since neither of us can do jack about that, I would really enjoy your cook books when you are gone.”

Death positivity is the cure for that hell. We’re going to die. That is okay. It is normal, and proper, and natural. Death positivity means understanding that, and even though it ABSOLUTELY SUCKS, not letting that get in the way of your daily business. Hell, it can do nothing but improve your daily business. Ever have a brush with death? Then you know this already in your bones. Mornings seem so much brighter when you almost didn’t have another one. Flowers smell so much sweeter when you know someday you will have smelled your last. Time becomes so much more precious when you understand there is a finite quantity. Marketers understand this and bank on it, or else “limited edition” would mean nothing.

Death positivity means understanding that YOU are limited edition.

“Repose” has another meaning. A lack of activity, a calm and composed manner. At rest, but alive. At peace with what’s to come, without need for euphemisms and coverup language. Call Death what it is, and fear it less. Talk about it openly, and remove some of its bite. Let me tell you what I need in order to die at peace without dancing around the reasons why. Ask me the questions you need answered, without fear of awkward silences or recrimination. Death is weird, be curious about it. Enjoy the time we have, because it’s limited. Make plans and understand why those plans are necessary. WRITE YOUR ADVANCE DIRECTIVE. Make sure your loved ones know where it is and what’s in it. Make peace with the idea of your own death, because it is going to happen and it doesn’t have to be a nasty shock when it does. We’re all going to die. It doesn’t have to kill you before you get a chance to stop breathing.

Build a better relationship with your own pending demise. Use the words DEATH and DYING, normalize it, and maybe, just maybe, we can all have some repose before we are In Repose.










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.