Recovery and Personal Responsibility

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This morning, I was reading a series of tweets that addressed personal responsibility. While the context was completely unrelated to eating disorders and the recovery from them, they did get me thinking.

As background, the initial question was related to stopping violence and someone had asked a city official what he was going to do to reduce the number of guns and the killings. His response addressed what had been done, but also said: “What about you? What are you willing to do to step up and work on changing the situation that we’re in?”

At my worst, I spent a lot of time looking at the world around me. Even when I knew that I was sick, it was hard to genuinely care. It was easy to give into the temptation, to believe that the changes that needed to take place were all outside of my control.

I wanted to believe that my doctor needed to find something wrong and prescribe a clear course of action to resolve it. I wanted to believe that my therapist would have all the answers – or at least be able to ask the right questions to help me get to them on my own, even if I wasn’t completely honest about where things were at and all that was going on. I also wanted to believe that, if I were to get really out of control, they’d take the decision-making out of my hands.

And all the while, while I expected someone else to do something – to do the work – I thought that it was enough to say, “hey, something’s not right here, and I’m struggling.”

Looking back, I can see with certainty that always expecting others to do the work wasn’t exactly a productive way of making changes. There’s no way it could possible work – especially when I wasn’t even giving them all of the information. In a lot of ways, I can see where not being upfront about behaviors and thoughts and situations was a lot like calling 9-1-1 to report a fire, but not giving those on the other end of the line the address. I tied their hands from the get-go, and in doing so tied my own as well.

Because really, that’s the thing about recovery: without taking personal responsibility for the outcomes, without recognizing that – no matter how embarrassing it seems – we have to share the details, and without being willing to keep doing the work, we’re not going to create something better for our lives.

Of course, this seems easy to say when looking at it in retrospect. That’s part of why it’s here now though. Now, I’m thinking about the eating disorder recovery community as well. A great website matters, as does providing the right information. Speaking up against the reflection on body image or even the body policing of Olympic athletes: These things matter too.

But we can’t leave it up to a select few to be the voice of reason. We can’t sit back and let others be the ones doing all the speaking out/writing letters to the editor/attending conferences/lobbying elected officials/talking with strangers and trying to change their minds. We’re all responsible for that, and that’s something I need to remember more frequently than I do.

ED Recovery Over Time: 9 Lessons Learned in 8 Years

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I’ve taken a long break from posting here. I have some reasons that probably would make some sense, but there are definitely more than a few that boil down to “I was busy doing other things.”

That’s not to say that those things aren’t important. It’s also not to say that I fully walked away from the eating disorder recovery community. I’ve still followed along on Twitter, checked in on other blogs, and – to some extent at least – chimed in on discussions on Facebook. This is something that matters to me, and I suspect that it’s something that always will.

It’s just that I’m starting to suspect that the further along that I am in my own recovery, what I have to say – what I can add to the conversation – is a little bit different than it used to be. In part, that’s because I’ve done a lot of growing up and evolving over time. In part it’s because my perspective isn’t always in line with what others are saying, and I don’t want to get hung up on the words and the details and lose the power of the greater message.

At the heart of it all, it’s the message that matters.

The message within the recovery community that transcends binge eating disorder, bulimia, anorexia, EDNOS, and everything that falls right outside of the spectrum is the same: You are not alone.

There is always someone else who can understand what you’re experiencing.

They might come at it from a completely different place. They might not be able to understand why you feel the way they do, why you don’t see yourself as worthy, or why you’re anxious about just about everything, but they’ve been there. They recognize the way it feels for them, and there’s a lot of common ground.

We have more in common than we have differences.

I’ve been seeing an increasing number of stories and articles written about men who struggle with anorexia and other eating disorders and the shame that they feel coming forward because eating disorders are thought of as a “woman’s disease” rather than a human disease. I’ve seen plenty of discussions balancing the focus on nutrition and food as medicine, and an increasing number on the role that families could/should play.

There are going to be differences in the way that everyone experiences their eating disorder (or that of someone who they love), but there are common threads. Most notably, there is this: without treatment and support for recovery, eating disorders kill. They kill indiscriminately. The pace is different. The cause may be directly (organ failure) or indirectly (suicide) related. But they do kill.

Hope matters.

Hope takes a number of forms. Maybe it’s a moment that just doesn’t seem as bad as all of the rest. Maybe it’s a moment of looking forward to talking with a friend, taking a walk on the beach, or maybe it’s just looking at the phone when it rings and knowing it will be someone you can talk with for hours.

Maybe hope comes from your faith. Maybe it’s just that little spark in your gut that whispers through the fear, saying “maybe it will get better – it has to.” Maybe it comes from trusting a friend or counselor or just from a passage that you’ve read in a book. No matter how hope comes to you, hang onto it. Even the most brittle thread will help to keep you alive.

Remember that more matters than just this moment.

In the darkest, most frustrating moments, it’s easy to believe that right now is all we have. It’s easy to believe that our past matters more than the future. It’s easy to get trapped in thoughts that say things suck right now and it’s never going to change.

But have you ever smiled at a stranger and seen their face light up? Have you held the door for someone carrying groceries and had someone say things because they had no idea how they were going to juggle what they were carrying and get it open? Have you seen a child at the library choosing a new book or having a story read to them?

Every single person on this planet can do something that brightens the day for someone else. We don’t exist in a vacuum, and we simply cannot thrive without others. The words we use may make all the difference in the world to someone. And even if it feels like that shouldn’t matter right now, it does. Even if it feels like hearing “it gets better” does nothing to address how much it sucks right now, just as the whole is always more than the sum of our parts, we are always more than just what we’re experiencing in the moment.

The moments do matter though, and it’s only be being present that we really see how much.

Mindfulness is a term and concept that’s talked about a lot more now than it had been in the past. It’s a matter of being aware of what we’re feeling, of what’s impacting us, and it’s a way of checking in. This sort of awareness – it gives us the chance to have control over our reactions.

When push comes to shove, the only things we can control are our reactions.

We can’t control whether our friends will show up when we have plans. We can’t control whether our co-workers will show up on time or whether the other members on a team assignment get done with their part of the work. We can’t control whether or not the bus is going to arrive on time or whether the server at our favorite restaurant will relay our special requests back to the kitchen.

It’s so tempting to just get angry and it’s natural to feel slighted and disregarded. When that happens, it’s also easy to get caught up in feeling even worse because we “shouldn’t react that way.”

Personally, I’ve come to hate the concept of should. It tends to be a way that we shame ourselves for being human – a way that we focus not on what we can accomplish but on how we’re not living up to our own expectations.

The expectations that we place on ourselves are almost always higher than those placed by others.

For that matter, the expectations that we place on ourselves are also often far loftier than those we have for others. If a friend of ours doesn’t achieve a perfect score on a test, we’re likely to jump in and say, “but look at how well you did.” When we find ourselves in that situation, instead of focusing on what we did accomplish, we go through a whole host of put-downs like, “I should have studied more,” or “if I hadn’t had to deal with [x, y, or z thing], I would have done better – but I should have been able to handle both of them.”

This is human nature and is rarely just a facet of having an eating disorder. But that doesn’t mean that it isn’t something that we can work on. Little changes like allowing ourselves a little bit more forgiveness – these can add up quickly.

Much like we need forgiveness, we need to be able to recognize that enough is enough. Strength comes from admitting that we need a little bit of support, from recognizing that sometimes it’s not possible (or wise) to go all in, and that we can only give as much as we have.

Giving 100% – or, in my case, the desire to always give 110% – isn’t always possible, and it’s never going to be sustainable for the long term.

That, of course, is the most important lesson for me to keep in mind now that I’m re-approaching this blog.

This space is never going to be a place where I come every day, where I focus on sharing my experiences. In other words, it’s never again going to be the place that it once was. I’m okay with that (though it took a while to come to that realization) and I hope that you are too.

Recovery, Reflection, and the Holiday Season

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It doesn’t surprise me any more when I see holiday posts on eating disorder recovery that talk about sticking with a meal plan and having an action plan in place for dealing with difficult family situations and expectations. Some of the premises still surprise me – even from my vantage point, while it seems promising that 8 steps can help support recovery during the season is intended to say, “Hey, you can beat this. Not only can you beat it, but it’s easier than you think,” especially early on, those steps can seem insurmountable. Do I believe that anyone who is driven towards recovery can make it through, unscathed? Yes. Absolutely yes.

But I should also point out that there really isn’t a one-size-fits-all approach to recovery any more than there’s a one-size-fits-all approach to choosing a college major, sticking out a tough job, pursuing a talent or a dream, or even getting out of debt. There are some similarities, but the path isn’t linear.

And when I go into the holiday season with my family, where lying/denying/hiding is still a requirement, I’m particularly in tune to the challenges that some of us face. While I fully recognize that family based treatment is ideal in some families, I know that it’s not in mine – and it frustrates me more than a little bit when I see its advocates telling others who have had crazy family scenarios told that family is always the solution just as much as it does when I see the lists of how families are to blame for eating disorders because they’re all the same.

Here’s my take: If we were all the same, if everyone had the same background, then we wouldn’t still be looking for cures. We’d know what works in all cases. And it would work for all individuals. But we’re not there. We can read about how one person undergoing treatment comes out and maintains recovery for a lifetime while another is in and out of treatment for another 5 years and another, tragically, never gets to have another try at life and never sees the outside of the facility again.

It’s my damage. I know this. I’m ranty and cranky. I’m tired and frustrated. I have a lot going on. But one of the things on my mind these days is how much easier life could be if everyone were able to own their own perceptions, to understand that others have different realities, and that everyone is trying to make it through as best they know how. We can try to support one another along the paths when we share them and we see that someone needs somebody to help them carry the weight of their burdens. We can ask how we can help rather than assuming that support should come in one specific format or another. We can simply try to be there.

For me, Thanksgiving always brings about a weird reflection on the last 21 years of my life. 21 years ago, my parents had just found out about my eating disorder. They decided to drive me across state lines for treatment, and they told me that, during Thanksgiving dinner, I was not to let anyone in the extended family know what was going on. It was something to be hidden away and dealt with. That’s probably part of why, 5 years later, I was preparing to join them for Thanksgiving once again, and the reason that I dreaded the trip was only marginally the result of my anorexia; it had a lot more to do with the fact that the following Monday, I was planning to check myself into the hospital for treatment.

Every year, something about this kicks me in the gut. Every. Single. Year.

Over the last couple of weeks, instead of just letting myself feel kind of “off” about it, I’ve been trying to identify what it’s going to take to change it. I’ve been trying to come up with some sort of solution that says, “this is the last year that the holiday season is going to be marked by loss, angst, and the impact of an eating disorder.” The challenge is that, with my family, with the patterns that we all fall into time and time again, and with the way that life has played out for me, I don’t think that it’s possible not to mark time in this way.

But – and this is kinda a big thing – I don’t have to let thinking about it and recognizing it impact my enjoyment of the holidays, Thanksgiving included.

We all struggle to choose recovery. For some of us, it’s more of a struggle than others. We all struggle to find the right balance between participating and self-preservation. We all struggle with things that we’re hiding and things that we’re dying to share. We all have ourselves to consider, and we all have people who we love – even if we’re more quick to see the imperfections, to feel slighted, or to thing that others have better relationships than we do. But we don’t have to let those things get in our paths, slow us down, or stop us from living full lives in which we fully celebrate all that we’re thankful for.

On Eating Disorders, Recovery, and Reflections of Ourselves

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With recent events focusing on bringing an end to “Fat Talk” and the increasing number of commentaries I’ve seen on why “you’ve lost weight” compliments are ultimately more damaging than not, I’ve been doing a lot of thinking about the ways in which we’re influenced on outside barometers.

I know people who can have their days totally made with a simple question of “have you lost weight” – even if their responses are focused on how the truth is anything but, even though they’re trying. I have friends who hate shopping because clothing just doesn’t fit right.

A couple of weeks ago, while out to dinner with a long-time friend who was talking about not getting why someone acted the way he did, was only able to understand when I explained it like this: “Do you remember back when eating disorders and diets were a big part of your life, and you’d go a week without restricting and purging and think, ‘damn, I feel a lot better – maybe there’s something to be said for this,’ but the next week went right back to denying yourself and thinking that you had to restrict to maintain your body? This is his version of that.”

I have a friend who I see fairly often who tends to be fond of giving me a hug, and, after, commenting on how nice it is to find that I don’t feel breakable anymore. While it sometimes frustrates me, I know that it’s because she was genuinely afraid of hurting me in the past, just by giving me a hug. In fact, I don’t remember being touched by her much at all when I was younger and far less healthy. This habit of hers is something that I can use to see myself a little bit more clearly – and to see more clearly the impact that my anorexia had on people around me.

This weekend though, I had a completely different experience.

I was a tangled mess of anxiety all last week leading up to a trip to New York to see a musician I first met almost 20 years ago put on a show. Admittedly, some of the stress was about the travel itself – and money, of course. Some of it was about seeing a lot of old friends with whom I’ve bonded over music, all people who knew me in what often feels a lot like a past life. We talk mostly online, and I haven’t been sharing a lot of recent photos, so even though they know me and know of some of my life changes, initially – well, initially they had no clue who the hell I was. Which is awkward. And which left me feeling an awful lot, well, like I should have known better than to go.

I was an outsider most of the night – though one friend had indeed tagged me as being present.

This extended a bit until after the show. I decided to stick around and say hi to the performer. She knew my partner immediately, but had no clue who I was. Greeted me like a stranger – until I called her out, said, “Um, you *do* know me; I didn’t think I’d changed that much.” She covered her mouth, looked e up and down, said “oh my god, oh my god, oh my god, I do” and hugged me. Pulled away, said, “wow.” Hugged me again. And then we talked for 20 minutes about life, and love, and whether I was as okay and happy as I looked, and about family, and about music. She talked to me while other people were having their pictures taken with her.

And I realized two things:

  1. It’s true, I really haven’t changed all that much.
  2. But I’ve changed so much that I’m unrecognizable.

Much of that, for me, is about having finally developed the confidence and self-assurance necessary to undertake one of the most drastic reinventions of self that a person can go through. But a lot more is the fact that I would have never been able to make these changes if not for having gone through the recovery process.

Just as my friend confirms for me – from the outside – that I am now healthy, another friend confirmed something even bigger for me this weekend: that I really am transformed, and really have made huge strides, even if I’m nowhere near where I want to be.

I’m hoping that that will ease the struggle some. I’m hoping that, while I’m still trying to build the stamina needed to let time run it’s course and to put the right conditions in place, it will be enough to help inch me away from the despair that I’ve been feeling.

ED Recovery and Acknowledging the Ongoing Struggles

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I think I’ve said this before: in recovery – from an eating disorder especially – some days are a lot easier than others. While some days go by without a disordered thought or behavior (much like the ways when we’re in the thick of our disorders there are some days that go by without a thought of eating or a thought of binging or purging), the longer that you’re in recovery – at least it seems to me – the more that it’s possible to have a day come around where all of a sudden the thoughts are back. What do you do then?

Anyone?

Because here’s the thing: I’ve been in an extremely solid recovery for just about 8 years now. Even when things have really sucked – when I lost two cats and a close friend in less than two months’ time – and I wasn’t necessarily inclined to keep pushing forward, I don’t think that that recovery slipped at all, despite the potential for it.

But I’m not entirely convinced that the ground I’m on right now is steady. So, for the sake of full disclosure:

I’m starting to wonder whether or not the thoughts associated with having an eating disorder are becoming a part of my day-to-day again.

It’s not that they are the “garden-variety disordered thoughts.” I’m not thinking anything like:

  • If I lost xx pounds, everything would be better – I could go after a better job, I’d spend more time with friends, I’d have a better relationship.
  • If I were to cut back on xx meal(s) each day, I could have more money to spend on books, concerts, movies, etc.
  • If I were thinner/more attractive, I’d be smarter or my ideas would be taken more seriously at the office or in the classroom.

Right now, for me, the thoughts are less about “thin” than they ever used to be. The thoughts aren’t exclusively about money – though there’s definitely a bit of that element in there – either. They aren’t about being taken seriously or about lack of opportunity in the most traditional sense either.

But I can’t deny the following:

  • My body is far from where I want it to be – and binding to ensure that I’m seen outwardly as guy is destroying me. Chronic pain is starting to have an impact on my ability to do my job, to manage my emotions, and to simply function.
  • Stress about money has changed the types of food that I buy and has dramatically limited the number of meals that I’m going out for with friends. The lack of social time is having an impact as well, and even though I’m making it a point to buy and prepare the foods that I want, there’s also the added stress of feeling like my partner and I aren’t sharing the work equally – mostly because I tend to be the one who gets home earlier.
  • I’m feeling completely trapped by my body and my experience – and that’s starting to kill me.

These realizations occurred to me this morning while I was able to make some time to journal. At that point in time, I was thinking about the fact that this year I’ve been feeling trapped a little bit in the past. Part of this is my love of music & the fact that the live shows I’ve seen have all been put on by the bands that I got into back around then that got me thinking. Part of it is the realization that I would be in a very different place in life now if not for choices that I made then – and mostly out of fear.

But what I keep coming down to is thinking about a homeless guy who would only refer to me as young man when I was at my lowest weights and then not at all when I was in various stages of recovery. And I keep thinking that if I weighed less, maybe I’d be seen more the way that I want to be. And that fuels the fact that I know that I’m tired of living in pain – and that because of my history with anorexia, my medical team isn’t keen on prescribing pain killers and muscle relaxants that have a high risk of becoming addictive. After all, no one knows how long it will be before I’m able to afford surgery, so there’s no way to pinpoint an end date. The reason that I can’t afford surgery? Still paying off treatment for my eating disorder.

I know that anorexia isn’t going to solve a damned thing. It never does.

I know that stigma exists, and that giving into it and trying to live life around it is simply exhausting.

But I also know that it’s so tempting to look for something that I can control – especially now when it feels like I’ve got nothing working for me right now. I’m feeling a lot like I’m falling apart, and there’s no way to plan for putting myself back together because everything I’m counting on is completely outside of my control. Just living from one day o the next makes the pain worse…

…And yet there’s nothing that will be solved by giving up on recovery. Nothing at all. But hanging on to that? It just doesn’t really feel like enough either.

Ongoing Recovery, Power, (Quite Possibly) Thinking too Much, and Building Community

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This is another long post, and it’s one that’s proven daunting to write – in part because I’ve been really, really raw this week. There’s also talk of the Vermont flooding and the damage it’s done, including to some cemeteries in the state. As hard as it is proving to be to write about, I’m guessing it could be hard to read as well. So consider this a trigger warning – one of few that I’ve put on this blog – and there won’t be any hard feelings if you wait and come back for another post at some other time.

The last time I was in this space, I was waging an epic battle with the property managers in my apartment complex because – well, everything in my personal space was falling apart. Mostly though, I still stand by my belief that there are things that are worth fighting for – especially after this past week.

It was a week ago that most everyone on the east coast of the US from the Carolinas to Maine was worked up over Hurricane Irene. We were expecting a hit here in DC, and since we’d already had an earthquake that week, people were… on edge. My in-laws were going to travel that weekend, with plans well in advance to leave their summer home in the south to head back to New England. And I tried to convince myself that they’d be alright making the trip despite the rain, the wind, and the gloom and doom forecast.

Their trip was fine last Saturday – I think that they got home in record time.

And now, because this is my blog, I’m going to start to skip around a little bit. If you follow me on Twitter, you might have a little bit of a sense of what comes next.

On Sunday, there were a lot of phone calls – despite the fact that VT was weathering more of the storm than had hit here. It didn’t matter how blue the sky was here. It didn’t matter that folks on the web were already talking about the fact that the news leading up to the storm was all hype and fluff. Because we were getting calls that said the water was rising and that the ground in VT couldn’t absorb it all. We were getting calls that said the propane company behind their house hadn’t secured the tanks, and the neighbors were talking about seeing them float by. We were getting calls that talked about a hiss of propane as the tanks started to be swept down the river and that 6 of the 1,000 gallon tanks were now in their backyard. Around this time, there was some talk about Vermont on the web – the first stories about flooding and it looking like the roads were going to wash out. The calls kept coming. Some people without power. My partner’s friends started posting reports to Facebook. She started saying “oh my God” every couple of minutes; I’d ask what, and she’d point to a photo.

For all the time that I spent not wanting to keep living in VT when I was busy trying to run from not so much where I was as who I was and the realizations that I was making about my life, I started to want to be back there a little bit – and then a lot.

This was a strange, strange, strange week. Some of the pictures have been absolutely devastating. Those that were captured at Buzzfeed really didn’t do them justice – and some of them were all too similar to others I was seeing. If you follow that link and look at photo number 3? That building is less than a five minute walk from my in-laws’ house, and my partners mother once worked in it. Photo 27? We drive past that bridge every time we make the trip back north. Photo number 2? While that area received very little destruction from the risen, churning waters in the wake of the storm, it was a weird one to see too, because my therapist’s office was pretty much right there when I saw someone in VT.

These pictures are all intense. None of them are the images that kicked me in the gut and got me trapped in my head. Those pictures were the ones of a cemetery. They were taken by an individual and not shown in many places. They showed coffins washed out of the ground, the force of the water having emptied them. One of them was blue and sized for a child. I lost it a little bit when I imagined a family, 20-30 years ago having buried a child. If they were still in the area, there’s a good chance that they’d just lost their home and most everything in it. And I couldn’t help but think about what it would be like for them to hear that their child’s remains had been washed out of the ground, and washed out of the coffin.

Water.

We drink it every day. We bathe in it. Sometimes we go to a pool or the ocean or a nearby stream and we play in it. But we rarely get to see how much power it has.

In all the thinking that I’ve been doing this week, it strikes me how much this flooding feels like the foundation of a metaphor.

See, when we’re struggling with eating disorders or alcoholism or depression or anything else – it’s like that water. We’re right there. It’s close at hand and it’s just… we do everything we can not to think about what a big deal it could be if only the circumstances were a little bit different because – well, because we think we know what we’re up against, and because it’s easier to just go with it than fight against it. So we stay sad. We stay hungry. We get drunk or we get high. And we think, “I’m around this all the time,” and we see other people who are able to dip their toes in – to just be caught up in their emotion, but able to work through, to go on a diet and then just as easily go off of it, or to have a drink after work with friends without it ever getting to a point of one too many or something that they absolutely need to survive.

It’s like it never dawns on us – while we’re struggling at least – that there may be something more than what meets the eye. It’s like we never think about the fact that, at some point, it may rain and there may not be any place for that water to go. We don’t think about the devastation that something that seems so much a part of every day can create.

Photo Credit: Lars Gange & Mansfield Heliflight

Photo credit Lars Gange & Mansfield Heliflight

(For larger versions of those photos and to see other aerial photos of the damage in startling clarity, please visit the source gallery, keeping in mind that the page loads slowly and will open in a new window)

Now, I’ve gone on a really long time in the post, and if you’re still with it, thank you, because here’s where I get back on track.

No one can predict when the flooding is going to happen in our lives. Most of the time, it’s easy to think about the common-ness, and not about the worst case scenario. I don’t advocate living like the worst possible option is inevitable, but I do recommend keeping an awareness that it is indeed possible – especially if you’re putting off recovery.

What amazes me about Vermont in this post-Irene week is the way that communities have come together. What astounds me is the number of people volunteering or setting up websites to share requests for volunteers or pleas for help or information about food drives. What amazes me is the community that’s being build online – and the support that people are willing to give their neighbors and even strangers. What awes me is the fact that in a place where there is so much loss, there’s also so much hope.

We’re all limited in what we can do as individuals. There are always going to be things that we simply cannot control. But I genuinely believe that we’re all better when we come together and acknowledge how damned hard things can be than when we sit back and think that nothing bad will ever happen.

“Persistence. Nothing in the world can take the place of persistence.
Talent will not; nothing is more common than unsuccessful men with talent.
Genius will not; unrewarded genius is almost a proverb.
Education will not; the world is full of educated derelicts.
Persistence and determination alone are omnipotent.
The slogan, ‘Press on,’ has solved and always will solve the problems of the human race.”
–Calvin Coolidge

ED Recovery & Things that Are Worth Fighting for

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There can be some days when life after an eating disorder is just about life. There are trips to the store, dinners with friends, nights out on the town. There are the sad moments too, of course: frustrations on the job, missed connections, unexpected obstacles, and even just the blahs that come out from the woodwork to sneak up on you and wreck your day.

But all of these things are just parts of life – little and not-so-little moments that add up to an answer of “it was pretty okay,” when someone says, “So, how’d your day go.”

There are also times though where life throws more at us than we feel like we’re going to be able to take. That’s been my last month.

Since I made the choice to start blogging again – about a month or so ago now – to see what muses were still in this space, I’ve been feeling like I’m going to drown in this whole life thing. It started with discovering a wet spot on the carpet.

Ever since we got the kitten in November, I’ve been edgy. Before “the big trip to the vet,” he liked to -er- claim certain things, and I’ve been hyper-attentive to things like washing bedding and keeping used towels and worn clothing off of the floor. So when we came in one evening and he was acting funny and trying to “bury” a spot on the floor, we panicked a little bit. Then when we started to try to suck the fluid into paper towels and there was just too much, we started moving furniture. One whole box of my comic book collection – of course, the ones that were worth something and slated to be sold to pay for surgery – was soaked halfway through with water and the bottom of the storage was covered in mold. The books on the bottom shelf of a bookshelf/CD/DVD rack were damp to the touch, the bottom of the shelf bloated with water. The bottom of the cat condo? That was soaked and showing evidence of mold as well. We started moving all of the stuff from this wall of the apartment, and reported it to the building management company the next morning – which meant that I was rushing to get to a conference at the last possible minute for work. They assured us that something would be done.

That evening, we got home. There was no indication whatsoever that they had done anything. I called the building manager, who told us that it would be addressed the following Monday. We went out to dinner because – well – I didn’t much feel like eating because stress and anger can sometimes do that to me and my partner does a great job of knowing where I need to head when I need to get out of my thoughts, unwind, and – of course – not just eat dinner, but also enjoy it. When we came back, maintenance had come in. There were industrial fans like those used to dry warehouse floors in my living room – and they were there and on for the entire weekend. Monday morning, I took the day off work to continue rearranging things – after all, while moving furniture over the weekend, my corner desk needed to be moved as it too was swollen with absorbed water & the fans had blown the water around – soaking the coffee table as well. The AC unit was checked out, a dehumidifier brought in for the overnight, and assurances were made that the leak was be stopped completely, that the fan would be taken out the next day, and that new carpet would be put down the following Friday.

Which would’ve been great – if it were true. Instead, we got zero communication, a new pool of water each day (& with it more damage to our furniture and other possessions), and visible patches of mold. The new carpet got pushed back. Promises were made that there’d be fresh paint. More failed communication took place. More questions went unanswered. Email became preferable to phone calls and skipping work because there needed to be documentation. Skipping work or leaving early became necessary because unless I was there and following up 10 times a day or more, and there was strain at the office and work was being impacted. We stopped eating at home because the smell of mold was so strong that we couldn’t be in the space. We stopped sleeping well because we couldn’t breathe. We kept throwing things out that we’d cared about or that had another purpose because they were damaged.

And all throughout the process, all we heard was that there was no mold. We heard this even after mold could be seen blooming on the wall and spores could be cultured from the air. We heard this and were told that we were wrong right up until I talked about calling the health inspector & the property manager finally came into the space and realized that, yes, one could see mold on the wall and baseboards & that we’d need to be relocated as soon as another apartment was available. I sucked it up and called and asked my parents for help for the first time in more than 5 years, and we made our first of two consecutive 500+ mile trips to take the cats to stay with them. We were assured that the space would be cleaned that night (Friday). On Sunday, tired from travel, we came home to find that nothing had been done. Let me repeat that: nothing had been done.

We called again. The director of maintenance who still insisted there was no mold called out contractors and, in Spanish, instructed them to tell us there was no mold. Then they kicked in the sheetrock and pulled out insulation with visible mold colonies while we sat in our living room. Then they complained that it was hard to work in the space because one of them was allergic to cats and it was making it hard for him to breathe. I had an asthma attack – my third ever – because of the mold spores that they’d released into the air. The property manager called back and said, “There’s no mold if they say there’s no mold; you’re making it up; they’ve done all they can.” I said, “they’ve just made it worse.” She said, “well what do you want me to do about it?” I emailed her supervisor who’d been included on the emails and in discussions talking about the need to do something.

The next night, we were told once again that we weren’t mold experts and told that if we were told it was nothing, it likely wasn’t for us to say that it was. But they put us up in a hotel. And then they rushed to prep another apartment. Since then, we’ve been moving when not home. We made another trip to pick up the cats. The restaurants that I look at as safe space – well, the one that used to be the place I went to when everything else was crap because I could get back in the moment there? – became unsafe for me last week. Before this weekend, I managed to go 4 weeks with sleeping no more than 5 hours per night. I didn’t eat a balanced diet because we weren’t able to cook at home. My body kept betraying me – not only was breathing difficult, but it was also compounded by binding, which is necessary until I can afford surgery. My sense of “life is what it is, and all I can control is how I respond to it,” cracked – because it got to the point where I didn’t have the balance that I needed to actually respond well.

It was the first time since 2003 in which I didn’t act or think, feel or plan, or find the ability to gain insight. Not sleeping, not eating well, drinking a bit, trying to do too much at once, not being heard, not being supported, being in a situation in which my health was jeopardized every single day, not having my cats around, moving furniture daily, seeing goals getting further away rather than closer: the experience of all of these things at exactly the same time felt like it was going to break me.

In truth: it felt a lot like those periods in the midst of a struggle with anorexia in which nothing I did was enough, nothing could be enough, and nothing was ever going to change. Everything was wrapped up in that apartment and its collapse the same way that everything can get wrapped up in a moment – in wanting the number on the scale to move in one direction and not seeing it, in wanting to be recognized as real and having value and not feeling like anyone was willing to say/do anything to validate, in the hopelessness, in the sadness, in the struggle.

And while I’m sitting here, while I’m writing this and planning to share it, I keep asking myself why I’m bothering. I’m telling myself that my terrible month of living in an apartment that was making me sick is so different that there’s no point to the story. I keep thinking that somehow I’ve got to find a lesson somewhere – and maybe this is the best that I’m going to be able to do.

Even though I didn’t want to spend the money (or really even have it to spend), we did send two mold kits off for analysis. Today I got the results: There were two different strains of mold growing in that apartment, one of which has been shown to increase the occurence of cancer in lab animals. I may not have gained much from the validation – and I may not have received a response at all from the management company – but I’ve gained this:

Some things are worth fighting for.

It’s so easy to try for something and meet a roadblock at every turn the way that I just did in my home life – and the way so many people do early in the recovery process. This time, I was dealing with maintenance, and office staff, and contractors standing between me and something healthier – for someone approaching recovery, there are other gatekeepers: insurance companies, the voice in the back of their heads that just says, “but you’re not sick enough,” or “you can keep going, it’s not going to kill you,” friends with similar behaviors, bosses that won’t allow time off for treatment.

The results haven’t been perfect. It’s still an ongoing process – the getting settled and getting my life back – and it’s going to continue to be one. But if I hadn’t fought, it wouldn’t have even started to get better.

If you’re just starting to think about recovery or you’re having a rough day and are thinking about giving up, know this: everything that stands in the way? It’s about protecting an asset – it’s about someone else trying to cover his or her own ass – and it has not a damned thing to do with you.

Some days you’ll have all of the support you need. Other days, you won’t. And it might feel like there’s no fight at all left in you. And you might wonder why you’re pushing through and fighting because it doesn’t seem like you’ve made an progress at all.

Those are the days that the fight matters the most. Keep at it. Because as trite as it sounds, it gets better. It doesn’t get immediately perfect, but it definitely gets better.

“Life is no brief candle to me. It is a sort of splendid torch which I am permitted to hold for the moment, and I want to make it burn as brightly as possible before handing it on to future generations.”
–George Bernard Shaw

I believe in recovery, and I believe that as a role model I have the responsibility to let young people know that you can make a mistake and come back from it.
–Ann Richards