Lilac season, disability, & staying home

It’s lilac season (well, the very end of it). I have survived many disasters in lilac seasons, and seem to be surviving another one. I keep scissors in my backpack so I can steal lilacs from the park, and I fill my backpack up with them, drape them over everything in my apartment, and press them between the pages of books and underneath my pillows.

I’ve been spending most of my time in bed, and have transformed my pillow into a desk. I am lucky to have what I call a “fancy mattress” – it is made of memory foam with layers of squishy gel, thick and deep, created to ease chronic pain (or at least not exacerbate it too much) and seems to hug and massage my body, unlike the spring mattress I had before, the cheapest mattress available, one which eventually grew mold and poisoned me and which I had to sleep on anyway because I could not afford anything else. Moldy or not, my body can no longer rest on ordinary mattresses, and this is one of the (many!) reasons I can no longer travel, or stay at a friend’s place, or be anywhere beyond my own bed. (Also, yes, sometimes anything that isn’t literal garbage is something I refer to as “fancy.”) Sometimes I can’t believe the things I made my body do (24-hour bus rides, couchsurfing, wandering unknown cities…) before my body quit. Even most chairs have become a problem for me, and I definitely can’t use a meditation cushion these days.


[image: My bed. Purple curtains, purple pillow, and a purple netbook with Saint Dymphna on the screen. A butterfly lavender plant in the window. A notebook on my nightstand. Bottles of pills, a lamp, a large window with plenty of green outside.]

Despite everything I’m doing to adapt to such difficult circumstances, to be as comfortable as possible, I still wake up feeling like I’ve been hit by a truck. My chronic pain condition seems to have begun developing seven years ago (with migraines and insomnia, etc. before the pain spread to different parts of my body) – I can trace back to particular moments in my illness when there was a perceptible shift, where something happened that I did not recuperate from; it accumulates. The last time I went to a social event – a zine reading & fair in one weekend, and another reading a week later – was eight months ago, and I have not recovered. I have not been able to go to another event where my friends are.

This Spring, I applied for WheelTrans, an alternative form of public transit for disabled folks in the city, as regular public transit is no longer accessible to me. It was a stressful process, and when I was accepted, I cried. When they gave me my registration number, I felt almost the way I did when I got my first ISBN, the way I had imagined having it tattooed on me. I thought WheelTrans would make it easier to see my friends, to attend events, to attempt to have some kind of “social life” again – but it hasn’t. Because my illness is with me always, and no matter what kinds of transit are or are not available to me, I am usually too sick to get to and from anywhere anyway. So I use it to get to medical appointments, and I use it to get to the post office, but that’s about it. I’m grateful of course because I wouldn’t be able to get to these places without it, but I am sad, also, because each time I hope for my body to return to some previous state, it refuses.


[Image: My tattooed hands holding onto lilacs and my accessible parking permit. I’m wearing an amethyst necklace other crystals on my wrist.]

So, this is my bed. My best friend. The one who supports me the most. I stay still but my moods continue to fluctuate rapidly – at 1 o’ clock I want to write nine essays and three books and ten zines, at 3 o’ clock I want to die, at 4 o’clock I’m crying again, at 7 o’clock I am enraged and bitter, at 9 o’clock I write some more, and at 10 o’clock I take my meds and go to bed. (Or, not really – I often don’t know what time it is despite looking at the clock, and am shocked to realize that when I think it’s 11 o’clock in the morning it’s actually 4 o’clock in the afternoon and I’m not sure what happened.) I wake up feeling like I haven’t slept. But I’m lucky to have such a big window – I watch the weather all day, I overhear funny strange gross ugly ridiculous conversations… And despite having not gone outside last weekend, I still got a sunburn.


[Image: Close-up of the butterfly lavender plant on my windowsill. It’s the only spot I can keep a plant without my cat ruining it – otherwise, I’d have plants everywhere.]

Being inside so often, or only being outside to see medical professionals, and having all my rides organized and booked in advance, is a strange feeling. I’ve noticed that on those rare times when friends come over, I feel like I’m being visited at the hospital. And when I have brief moments in which I can wander between appointments and WheelTrans rides, I feel like I’m on an afternoon pass from the psych ward. I feel like all those hospitalizations I’ve had will reside in my bones-guts-brain forever, but this doesn’t bother me so much as long as the memories and consequences and repercussions and stories and feelings don’t become too much for me to carry.

Alivingly Yours,

P.S.: As a follow-up to my recent request for financial support, please note that I have since paid my rent, and written an update at the bottom of the entry. I am physically and emotionally exhausted, and it’s an extremely difficult situation for me to discuss (I have so much I want to say, but haven’t been able to without debilitating panic attacks and other unfun and barely manageable “symptoms”), but what I can say is that I am so, so grateful for all the support/$upport I’ve received from friends, from readers, and from strangers. For all kinds of reasons, especially those around being diagnosed & psychiatrized & pathologized for so fucking long, I have a hard time asking for and accepting help and support, and still feel surprised and confused when people are kind or generous with me with no strings attached – that’s another story, or a more complex part of the current story, that I won’t get into right now. But, thank you.

P.P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!

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