and, on an entirely personal note

[buggery]

This has nothing to do with fandom, so if that's all you're here for, skip this post.

Five years ago, my life changed. I woke up the morning of 8 January 2000 (also a Saturday, in some strange coincidence) to find that my body had stopped working properly overnight. Literally overnight -- I had been at a friend's birthday party the night before and, despite being only *almost* completely over a cold I'd had earlier in the week, I'd felt fine.

Not that Saturday morning. I woke up exhausted like I'd never felt exhausted before. Just getting out of bed made me out of breath. When I was able to get to the doctor Tuesday, he diagnosed me with bronchitis and prescribed antibiotics. I was supposed to be better in a couple of weeks.

The bronchitis went away on schedule, but the shortness of breath and the debilitating exhaustion persisted. I tried to go back to work -- I had to, because according to the doctor I was recovered -- where I discovered that my muscles were failing when I nearly collapsed getting up from my desk.

I--

::pauses::

Fuck.

I've been thinking about making this post for a couple of weeks, ever since I realised that this was the five-year anniversary coming up. Five years. Five years since the last time I would ever run up a flight of stairs -- ever run *anywhere* -- fuck.

::pauses again::

I don't think I can do the kind of looking-back I'd planned to. I know I'm not up to detailing the months of abuse from the medical community before someone finally looked at me and said "Oh, you have multiple sclerosis," or the months of abuse from my Evil Ex who couldn't deal with me not getting better and drove me to make two suicide attempts, or the pain of having people I'd thought were my friends abandon me when I could no longer keep up, or the pain of losing my house, or terror I felt when the nursing home I wound up in tried to have me drugged into a stupor because I'd asked for my grilled cheese to be served warm and my cold cereal not to be liquefied to mush.

It hasn't all been bad.

I'm no longer a workoholic -- I'm physically incapable of it now -- and that has to be good for me. I have new friends, many of whom are disabled themselves. My government disability benefits came through just in time to enable my escape from the scary nursing home and get me my current apartment, which all things considered is a pretty nice place to live. My cat is back with me.

I have more free time for fandom. I have two very fulfilling volunteer jobs that don't require so much of my time that I exhaust myself and that I can take a day off from when I need to. I have a motorised wheelchair now that enables me to have three times as much of a life as before, because I can go places and do things for myself that just wouldn't be possible without it. I got into a brilliant program that lets disabled people hire their own aides, whose main fault is that it takes so long to get into (over eight months from approval to active status, after over a year on the waiting list).

I don't have any pat conclusion for this post. There are things about my life now that are arguably better than before. Were they worth everything I had to lose?

I'm still grieving. I may never be entirely over it.


edited to add:
Wow. Thank you *all* for your outpouring of support. I... can't actually respond to the individual comments right now, so in the meantime, blanket gratitude.

Comments

[thete1.livejournal.com]

*hugs you*

[barely-bean.livejournal.com]

*hugs*

[karabou.livejournal.com]

*loves on you*

[nifra-idril.livejournal.com]

*hugs*

[j-bluestocking.livejournal.com]

I have so much respect for you, Jack, I can't say.

[sage]

*sits by you & holds your hand*

I'm glad you're here.

[codyne]

*hugs*

[shrift.livejournal.com]

No hugging. Just stoic nodding and, "If you you need anything I can give, all you have to do is nudge me."

And if I'm ever doing anything that inconveniences you, feel free to whack me.

[http://users.livejournal.com/__marcelo/]

What shrift said. Like whoa.

[unovis.livejournal.com]

*smooch*
happy to have met you, baba

[percy-weatherby.livejournal.com]

Chronic, severe, and complicative diseases are always an incredibly traumatic, horrible experience. I have problems myself, and I still feel bad for the people who are, PHYSICALLY, worse off than myself. However, the spirit is an amazing thing, and it can triumph and shine in ways that other parts of the body sometimes can't.

A person's worth is a person's worth. No matter how many times you wake up in the hospital crying and think, "Oh god, this is going to change my entire routine again, oh my god, I'm dying" -- I did this many times through a few diabetes hospitalizations, and well, no. You're not. You're living-- rough and tough and it's not fair at ALL. But you're living.

And you can be HAPPY, and you MUST be. It's all the more important.

*snuggles and pets*

You know the platitude. Whatever doesn't KILL me...

[unlovablehands.livejournal.com]

I feel like I should have something more useful to say than *hugs*, but... I really don't. So you get the internet hugs.

[jamjar.livejournal.com]

Like evadne_ said, I wish I had something better to say, but *hugs* and you have my respect and liking.

[suzycat.livejournal.com]

Thank you for sharing this. Sometimes it's necessary to rail.

I live in constant fear of losing my legs. So this touches me more than I can say.

[tir.livejournal.com]

Like others who've already commented, I wish I had something better to say, other than I respect your strength and offer internet *hugs* if you want them.

[ex-siviusx805.livejournal.com]

Wow, Jack, I had no idea. My ex-girlfriend's older sister has MS, so I have seen how hard it is to deal with, both physically and mentally. The difference is that she's had most of her life to prepare for eventual denegeration, whereas it sounds like it hit you out of nowhere. I just, wow. I have so much respect for how obviously strong and well-adjusted you are.

I know we don't know each other very well, but if there's ever anything I can do for you, please let me know.

[penelope-z.livejournal.com]

*hugs and hugs*

[saturnalia.livejournal.com]

I'm pretty new here so you won't know me that well, but... I have so much respect for you right now.

[zing_och.livejournal.com]

gives you some more *hugs*

I admire your strength and courage to deal with the disease and to talk about it.

[skalja.livejournal.com]

We don't know each other that well, but ... I've admired you as long as I've known you in fandom, and now I think I admire you a ton more. *tilts head* Hugs if you want them. I won't presume.

[jcalanthe]

*hugs* I'm so glad you're in a safe place now.

[terpsichoreslyr.livejournal.com]

*****hugs*****

[fox1013.livejournal.com]

*hugs tight*

[naturalbreath.livejournal.com]

And I thought you were cool before. My respect for you has skyrocketed. I'm not sure I'd be able to react with such a...good-heartedness if the same happened to me. I had trouble trusting people after my own problems, and those are inconsequential compared to yours. Thank you for posting this and generally being awesome.

[glockgal.livejournal.com]

<3 <3

You are so strong, hon.

[gloss]

Dude. Wow.

Keep on keeping on, okay? You're a stunning human being.

[some-stars.livejournal.com]

i am very glad you stuck around, for the selfish reason that, you know, i like you lots. *hugging*

[nos4a2no9.livejournal.com]

Jack, I really had no idea, and I just wanted to add my voice to the chorus praising your strength, resiliency of spirit and determination not to be mowed down by this disease. Like someone mentioned above, the rate at which the MS hit you is the most shocking. My entire experience/knowledge of MS stems from The West Wing and my friend's mom, who has lived with the ailment for 18 years without any marked deterioration. I had no idea it could hit so hard with such devestating consequences.

All that said, you've done remarkable things with your life, and aside from being such a cool, talented person online I'm awed by the way you've coped with everything life's thrown at you. Kudos to you, and *hugs* You're a very special human being.

[cadetdru.livejournal.com]

*hugs*

[sharpest_rose.livejournal.com]

*lots and lots and lots of hugs*

*and some more hugs*

[minim_calibre]

You'll find me in the corner with Shrift, muttering to myself, "Damn, Jack is one hell of a human."

[griffen.livejournal.com]

Wow, this is all stuff I didn't know about you, and I just want to say that although I don't know what it's like to have a physical disability like yours, or to have been "normal" before becoming disabled, I sympathize.

You're very strong.

[sparklebutch.livejournal.com]

*big hugs*

....I know.

[badficwriter.livejournal.com]

I wish you good things. You have certainly brought happiness just by being here.

[meret.livejournal.com]

*huge hug*

[sanitylapse.livejournal.com]

::joins the hug queue::

[rubynye.livejournal.com]

I read this when you first posted it, and again when you linked to it from your most recent post. I wanted to say something, but everything I could think of... well, anyway. I hear you, and I'm listening, really.

And you're amazing, but, well, yeah.