An open apology

Dear everyone I know:

So I feel like I owe you a better explanation than most because you’re awesome & supportive & we’ve known each other too long for bullshit.

Straight up: I’m sorry Ive been a crap friend lately. Basically everything is a trigger right now. Movies. Leaving the house. Car trips. Texts. Most of the internet. Friends. Plans. Lack of plans. Silence. Noise.

I’m a big raw nerve. I get freaked out talking to people. I dread being asked how I am. I’m bitchy. I’m unreliable. Unpredictable. Most days it’s a struggle to eat/sleep/function. A lot of panic attacks are hidden by hanging up a phone or leaving a room. A friend showed up unannounced yesterday & all I could do was cry in the garage. Because I was afraid because someone I like acted like they cared. It’s nonsense.

Depression is an asshole. Anxiety is a motherfucker. I just didn’t want you to think it’s you. It’s me. I’m a mess.

I’m not proud of it. I’m not happy about it. But apparently it’s where I am. I’m working on it.

I hope you understand. I hope you are not offended. I love you. I’m sorry I am not myself right now.


The quiet is really fear.

The quiet is really fear. A friend found this page & I no longer felt safe sharing the beautiful heinous thoughts in my head here. I already feel too much judgement from The World.

And then the silence became another fear: fear that talking about it made it real or more real. Or that it would ruin my Pollyanna Positivity default setting to have to admit the many times a day when the doubt, worry, fear, & anxiety works its way into my mouth like a gag.

This whole titanic mess of a complexity I’ve had going on over here seems like a thick cold yellow Gak-like liquid I am drowning in.

Every time we get a breath some other anthropomorphasized bully sends his boot flying towards my rib cage & knocks that breath back out of me. Of us. I’m not in this hell alone.

And so I decided (not being able to win the larger battles) I’d find smaller ways to sneak joy into our lives. I celebrate every-fucking-holiday. Every holiday. I decorated for Halloween, Autumn, Yule, New Years, Winter, Mardi Gras, Valentine’s, and I’m about to set in on Spring & St Pattys.

I’m keeping myself alfoat with foam cut out decorations from the dollar store.

Most of the time it works.


Breaking the silence (& an update)

Yesterday the first of many long days at Johns Hopkins.

As part of this treatment he will be receiving IV infusions of brentuximab vedotin & ipilimumab. This is still a form of chemotherapy but “targeted” & a much less toxic salvage treatment option. The study lasts 14-16 cycles. Each cycle is 21 days. We’re expecting to be participating through May 2016.

Obviously this is a long road. There’s no promise that he won’t require further treatment after this is complete. There are a lot of things up in the air, questions yet unanswered.

Thursdays are going to be a rough day for a while.

He felt okay last night but I nodded off somewhat before him. I’m afraid to wake him now for fear he will be in pain or some other distress.

I got up & did some really basic yoga. And I cried the whole time. I don’t tend to let people see that. Actually I don’t tend to allow myself to feel that. This morning though… all feelings.

As a matter of fact, I am.

I thought I understood disability. I really did. I gave folks the benefit of the doubt when they “looked fine” but had a handicap tag or said they felt badly. After all, I’m quite capable of looking fabulous on a bad day with fibromyalgia & anxiety. My husband got through his first round of cancer with nary a visible side effect (some extra grey, some thinned eyebrows) but I know what he was really going through.

Recently we went to a community aid event. You know the type, good Christian folk handing out food & shoes & first aid kits. From the word go I was horrified by the assumptions of people (mostly those putting on the event) about people’s needs & disabilities. We have handicap tags on our vehicle. Instead of the parking guide asking if we needed a handicap space (we do) he said “you aren’t handicapped, are you?” and immediately began ushering us towards regular parking. My husband corrected him & he begrudgingly obliged to give us proper parking arrangements.

There’s been entirely too much of that.

People still have to live.

Do enough travelling, meet enough people, spend enough time living with a chronic condition or terminal illness (or living with someone who is), and you’ll wonder how you, or more often they, do it. How do you live with that weight all the time? I can’t speak for everyone. For us, we saw two options – dwell exclusively in your misery… or refuse to dwell in misery (as much as possible).

We are choosing (continually. Every. Single. Day.) to stubbornly refuse being mired in misery. Do we fail sometimes? Yeah. Sometimes it gets the better of you. Sometimes the weight is crushing, swift, & unexpected like a bolt of lightning from a clear sky.

But for the most part, we laugh as much as possible. We eat & dance & love & *most* of the time we look happy… because we *are* happy. It seems an enormous contradiction to be so terrified, dealing with so much pain & the looming potential for so much more, & yet still able to identify as happy.

You’d be surprised how much judgement comes with that. People truly expect (and some demand) that you be miserable ALL THE TIME. Every moment. They act (and often tell you bluntly) that you haven’t “earned” their help or even their sympathy until you are utterly destitute, alone, & steeped in misery. If you are able to dress yourself & smile… no sympathy for you. How ridiculous is it to think someone is undeserving of your compassion unless they have lost literally everything including themselves?

There are a lot of repressed people in the world, even in this country. We mostly ignore their daily lives & focus solely on their plight – this terrible struggle that they live every day – afraid of the police or religion or governments or spouses or gangs or whatever. Pain & fear are the world’s biggest oppressors. It isn’t the police or religion or governments or spouses or gangs, it’s the pain & fear they reign down on those affected. Those who haven’t dealt with either get so focused on the struggle that they forget: People still have to live. And living requires both joy & sorrow. Life is anything but stable, so to expect someone be any one thing ALL of the time simply doesn’t make sense.

If everyone dealing with some great misery (in any form) were to dwell only in that misery 100% of the time they simply wouldn’t be able to function, even on the most basic of levels. 80% of the world’s population would effectively spiral into a depression & probably kill themselves. The reason they don’t? When you make the choice to live you do it knowing life often, if not always, brings pain. If you choose it anyway, you’ve accepted that there will be some (or sometimes a lot of) pain. And then you move the fuck on. You smile, and you keep on dancing.

So if you meet someone, and they don’t seem miserable enough for you in comparison to their circumstance, instead of assuming that they’re somehow “faking it”, do me a favor – smile with them, dance with them, appreciate that they are doing everything that they can to keep their head above water. They are NOT, at that moment, drowning in their struggle, their misery, they are, against all odds, rising above.

Fuck you, if you can’t celebrate that.

In which she feels like the complete arse that she is…

I’ve always held that people are basically good & they will surprise you (positively) if you give them the chance… but occasionally I forget.

Today has been really humbling. In a lot of ways.

Someone anonymously paid for my daughter;s Senior Cosmetology Kit.

We’ve had 4 separate offers for a place to stay, should it come to that.

Friends with more medical problems than we have donate $300 to keep us from sinking.

Someone I used to consider family reminded me why I felt that way & made me realize what a complete ass I’ve been.

I’ve had all the emotions today. All of them. And now I’m just fucking speechless. And humbled. And… wow.