I sent this mail out to about 40 people on Sunday: old friends, and family. Half of them knew most of it but golly gee: so that’s me and this weblog open and raw to the world then.
I guess it’s as good a way of introducing any new friends to what this is about as any, poorly-constructed as it is. I’d been aching over sending it since December, and decided I needed a weblog in case anyone who received it wanted to understand a bit more. So it all became a bit chicken-and-egg.
I guess time will tell if it was wise. I’ve been swaying from slightly-euphoric relief to screaming anxiety since, my biggest fear being that it’s an imposition of things to some people who don’t want to know it, and most of all, with respect to gender to the half of those who didn’t know, that they’d be forced to call me something they weren’t comfortable with in public, while raising eyebrows at each other in private. This could only make me more isolated, and it’d be my fault. But I’m so unhappy and lonely, this may be a nothing-to-lose thing, that I should have done 5/10/20 years ago.
I’m also very worried about precedence: how when some read this mail they may reflect what I tell them with respect to others (some will understand this), or with respect to representations of transgendered issues on the web, most of which I dislike intensely. That’s another article I guess.
Message edited wherever I feel like it, because it’s mine, to protect the innocent, including me. I’m not proud of the style, phrasing, or how hard/embarrassing it must have been to receive by some. But some things you just have to do to survive I guess.
I’ve had some lovely kind short replies, a couple that have made my heart leap with happiness, and one or two that have amazed me with their insight. Because their reactions made me brave, I’m going to include the letter here and now. No-one’s been nasty, so my little Thai friend, who offered to kick-box anyone who was, will have to keep her boots clean for now.
This is a hard email to write and I’ve been writing it in my head
for several weeks. It’s really a “me” letter – something to try and
help myself – and I’m sure I’ll feel excruciatingly embarrassed the
minute I send it. It’s long too – sorry.
I’m quite ill, and altogether not in a very good way, and one of
the reasons I think I want to send this (although I’m not sure of
most of the reasons) is just to clear the air for myself. Someone
being ill can be very awkward for the non-ill, not knowing what to
say, worrying about saying something inappropriate, etc. and I don’t
want that to get in the way anymore.
So here’s the thing: my ME/CFS has worsened considerably in the
last few years, as some of you will know, and really dived in the
last 6 months. I’m currently stuck in the house, mostly in bed.
Which makes me terribly afraid about my future, and L’s future,
as a consequence of my inability to cope.
The worst thing of all is that I’ve developed a large chunk of bad
daily anxiety disorder, and seemingly untreatable depression over the
last 5 years – none of this was a feature of my first 5 or so years of
ME/CFS – and it’s crippling. These are largely still taboos, which
I’ve toned down in talking to most of you over the past few years,
but they’re big and threatening now – I’ve felt suicidal recently,
to be frank. Which I don’t have any real excuse for, as people have
it a lot worse than me, but it flares up. None of this is helped by
the feelings of isolation set up by not being able to see friends,
through physical inability, social anxiety, worry of what you’ll
think of me, worry about just generally being a pain to have an
ill person around that you may feel you have to talk illness with.
And it’s all compounded hugely by my being transgendered, as some of
you will know and have discussed with me til the cows come home for
years, some of you will have guessed years ago and been very quietly
sweet about, and some of you will be blinking at right now, I guess.
It’s just been a very big sorrow to me since childhood, and a cause
of lots of shame and worry. L deciding to call me Honey years ago
wasn’t a coincidence, and the fact I repeatedly foisted it on you all
without explaining it to at least a significant proportion of you is
something that makes me feel quite ashamed. The happier coincidence
that I’m bi and L’s always felt more gay than straight means
thank goodness we both have someone to love dearly. But L and
others have had a lot of trouble translating mental female pronouns
when referring to me into male ones in the company of others, I can
tell you. Hopefully they can stop all that now. I’m really sorry -
with some of you I just couldn’t find a way to tell you properly,
or it just felt like an intrusion you probably didn’t want to hear
about, so I played with it like a game, when really it’s a fairly
constant big sad ache. If some of you who didn’t know can make the
imaginative leap to see me and treat me as I really am, that would help
me enormously. I understand it’s not easy for some to accept, or do.
Probably the most welcome response from the half of you who I haven’t
talked to about it would be “duh, now tell us something we DON’T know”.
I suppose I wanted to say I really do feel very lonely at the moment,
and L too, and I’m aware that 90% of it has been me blocking out
everyone because of this vile anxiety, depression and body-numbing
illness. I feel bad about giving into this. I can’t keep doing
this and staying alive, and this mail I suppose is an attempt to
grab a straw. I can’t do without friends, but sadly I don’t have
anything to offer back right now, so it’s been catch-22. I just
didn’t want you to think I’d tailed off communication through apathy,
or that something else was going on that grabbed me more. Nothing but
fear and trying to come to terms with living in some solitude with a
certain amount of disability for the rest of my life is grabbing me
right now. I can do a good impersonation of fun-ability for a time,
but vicious mood swings are a feature of this illness, and I suspect
it’ll be a long time til I get round this mountain, if I do.
I guess I wanted to clear the air in terms of future expectations
too. A few months ago, the hearing in my left ear disappeared into
mush, coincident with me contracting a nasty gastric thing, and I
was assured repeatedly by my GPs that it was a middle ear
infection and would go… I probably set off their hypochondriac
alerts. The current 80 week (yep, 1 1/2 years) waiting list locally
to see an Ear/Nose/Throat department eventually made me
blow a gasket so I swallowed my dubious Old Labour pride and paid
for a private consultation, and was swiftly told that the loss was
“severe and permanent” and in my inner ear, and was ushered off
for yet another set of blood tests and an MRI scan, which I’ve just
had, to eliminate anything really nasty. This ENT surgeon
did a lot of shrugging, and said if nothing really nasty proved to
turn up it’d just be “one of those things”. The result is that
I’m terrified I’ll have another “one of those things” on the right
side, and be plunged into deafness, with fat chance of keeping any
friends but some annoying mime artist called Tabitha. I get a lot
of nasty echoes now in anything but very subdued conditions, tinnitus
(pretty constant loud ringing) in my left ear, and I’m having trouble
listening to the TV or music except via headphones which help a bit.
I suspect concerts/cinemas/busy pubs might not be on anymore, even if
I get rid of some of this ME/CFS stuff and can go out at some point.
It’s just all very scary to see your life seemingly disappear like
this: I think I’m trying to say if I do get a chance to see some of
you again, I don’t want to be a PAIN, so please don’t misinterpret
me running away or hiding under tables as anything but a me-thing.
Music and friends have been my whole life, and if I go deaf(ish?),
I’m not sure what will keep me going: I suppose the best I can say
is that at least I’ll have a lot of music I’d like to give away if
anyone wants it.
Oh goodness, some of you are probably wondering why I mailed you.
Some of us probably haven’t spoken in person in years. Just please
take it that either you’re a dear friend, who’s put up with endless
tears and screams over the years, or that you’re just someone I
intuitively felt a need to mail – because you’ve been a friend, and
I just had to mail because I get a mental nudge that you have that
sensitivity to understand some of this and my stupid need to send
this mail. There’s probably a dozen other people I’ll be horrified I
missed off, but some of you have partners who know me, or friends, or
people whose email addresses I couldn’t find before chickening out from
sending this, who you could tell if you wanted. I used to tell people
who were kind enough to listen to me to keep things to themselves -
shame, and the british need not to embarrass others with personal woes
- but please don’t do that anymore. Desperate times need desperate
measures, so please if it’s relevant or you feel it’s getting in the
way of talking to someone else, just splurge. If anyone who got the
tail end of this felt the need to decry those with ME/CFS as fakers or
cases for the shrink, or indeed similarly for those not born with the
same brain/body gender, then sod them. I used to care but I’m past
all that now. It might actually make it easier for me to take some
abuse for actually being me, rather than doing it from the inside.
So don’t worry about it. Mail Prince Charles if you want.
In that spirit, I’ve made a terribly serious weblog too, 25 years
after everyone else stopped posting to theirs, maybe just so I know
I’m open and staying open now. It’d be nice if some of you who felt
like it popped in.
I hope this is the first and last mail of this type I’ll ever send
again and you’ll ever have the embarrassment to read: I feel like
some massive egoist, and I’ve never done anything like this before.
I just am feeling very bad, very black, and very scared a lot of
the time, and it would be nice if anyone had been through anything
similar and as bleak and prolonged, or knew someone who had, or knew
a kind thoughtful ENT surgeon, or knew anyone who might know anyone
with any expertise on ME/CFS or immunology, or just knew something
cheery could drop me a line. I’m rotten(/phobic) with replying to
emails just now, so I can’t offer too much back – really on anything
right now – but it’d be nice to hear some kind of echo back from this;
or maybe comments on the weblog or something. Oh and I’ll turn on
MSN too seeing lots of you are.
Oh, mess of a mail. I think all I’m really saying is please don’t
treat me with kid gloves. You’ve all been so kind over the last
10 weird years of my life, and it’d be a relief, I think, if you felt you
wanted to, to just ask the most inappropriate questions to me about
anything I said that you wanted to ask about. Walking around me
in carpet slippers just now might make me feel I’m on a hospital
ward somewhere near the exit, and that’s the worst thing right now.
I’m not sure what I’m asking for really, having got to the end of
all this. I think it’s just so you all know, and I know you know,
and I can have a bit of an anxiety rest and maybe join back in a