a series of firsts

there is a first time for everything, after you wake up from a coma.

first conversation.

first confrontation.

first quip. first time I stood up for myself.

first book. first revelation. first run on the treadmill. first cold. first day that I cleaned the house.

after that will come first friendships. first jobs. first modicum of respect. first time I can feel excited. first time I sing for an audience. first child.

In the meantime, I'm going to rewatch Buffy the Vampire Slayer, Season 6. Buffy spends the first half trying to figure out how not to feel dead inside. I seem to recall something about stylish yet affordable boots.

waking up from a 20 year coma

On the heals of writing about my difficulties with employment I decided to take time off work to a) escape my crazy boss and b) get my brain working again. I succeeded on both counts, for the most part.

Of course I'm still working on finding a way to escape my boss while I'm actually at work, but that's a whole other story.

What happened while I was off was that I got in to see a new doctor who specializes in integrated medicine (loosely translated it means he's enough of a kook in the medical field to actually have read up on how to treat me). He agreed to order a 4 point saliva test for me (not covered) which measured my cortisol and DHEA levels. Then he correctly diagnosed what I had suspected: my adrenals are shot. The probably have been for TWENTY. YEARS!

Will someone pls explain to me how this kind of incompetence is possible in a supposedly 'developed ' country like Canada?

So I ordered an OTC adrenal supplement online (not available in Canada) and my doc sent me a prescription for DHEA through the mail. That's right. THE MAIL. No inconvenient second visit necessary or arguments re: how to treat me because a) he did a thorough history and assessment up front and b) HE KNOWS WHAT HE'S DOING.

I have energy. I am up. I am up and about. I speak. I'm almost making sense. I have enthusiasm. The only problem is that I've basically awoken from a twenty year walking coma.

What the hell am I supposed to do now?

success and its attributes

So I've been connecting with ppl I knew in elementary and middle school on Facebook. Never a good idea, I really should know better.

But it doesn't matter really who you connect with. It's always about competition, comparisons, who's winning.

In spite of many of my goals circling the drain, I've never considered the state of my life to be one of failure. The medical system in my country has failed me (not the USA, incidentally). My family has failed me. Many of my friends have failed me. My body has failed me. But I have not failed.

My go-to publication Salon.com published an article by a veterinarian in California who lost enough of her income that she and her family (three kids) had to give up their house in a nice suburb. Yet another house collecting dust somewhere as a casualty of this recession.

At the risk of sounding self-righteous and patronizing, the lessons that Generation X'ers are learning about the loss of their 'stuff' as a result of this recession, I figured out about 2o years ago when I realized that I might be sick enough, long enough, to forego any chance of earning a reasonable income AND not be sick enough to get a disability pension. When everyone in my age group did not 'get' that this was a reality, I realized that I was truly fucked.

So when I could work, and I could get some 'stuff' I loved it. I held onto it. This weekend I went on a camping trip in which I was housed by a 20 year old tent that still keeps me completely dry in a rain storm. But because I earned the letters after my name with financial support that many don't have, this success is dismissed. Because my nearby peers are now raising kids and buying houses instead of cherishing their first tent, I'm seen as pathetic. I know that I get some points for the sweat that it took to work through sickness, but I can't share it with anyone because if word gets out, I'll be unemployable.

Right now, I'm struggling to keep a job. I changed careers and work with ppl who are NOT exactly socially literate or compassionate in the face of someone who is struggling. My cognitive problems (while manageable, and don't affect my performance) now affect how I can 'fit in' to an organization, whereas before I could 'out' myself as having learning difficulties and be admired for my ability to compensate. I'm also getting older, so I should have accomplished more by now (middle management, at least). But after my career change (I needed a job less prone to burnout), I have been ousted from jobs three times, only to be replaced by someone who probably a) doesn't work as hard as I do b) doesn't appreciate what they have as much as I do and c) doesn't understand health care as much as I do (I work in the health industry).

Does this mean I have failed? I can't stayed employed, I don't have kids (couldn't raise them if I had them), I barely have a social life, I can't convince my doctors to provide the health care I need, nearly everyone who ever cared about me either a) is alienated from me or b) is using me as a competitive marker to boost their own status in life c) my sister and mother were charming addicts who have spread rumours and lies about me that have turned my family against me.

Am I attracting all of this crap into my life? I am the bottom line here right? Well hells no.

Ignorance is the bottom line here. Striving is the bottom line. Apathy. Jealousy. Did I mention ignorance?

I didn't fuck up. I have survived, I have persevered, I have been patient with the health system beyond all words and comprehension. I have landed a nice man who used to play bass in a band and can pull off horned rimmed glasses with a receding hairline. And still, I have to deal with ppl who don't have a fucking clue what I've been through, trying to fuck my life up even more.

Fortunately I got a couple of weeks off work to breathe (unpaid, of course).

and. And. AND. I have an appt. with a doctor who knows what they're doing in November.

(I know it's been said before but I'll say it again. the authors of The Secret can suck it).

still sick after all these years

Today was eventful.

Got up. Late for doctor number one's appt. (missed bus). Got lectured by doctor number one in doctor number one's office about being late and why I should listen to the specialist she sent me to who may change my meds (you know, the ones that actually make me feel better).

Uncontrollably broke down in doctor number one's office wailing 'when am I EVER going to get the health care I need?' Got note to be off work for two weeks (unpaid of course). Doctor agrees to read literature I left her and refer me to another specialist.

Same day, get call from doctor number 2 (had left desperate message with doctor number 2 a week ago to plead to be taken on as a patient and forgot about it - memory lapses are clearly a defense mechanism). Doctor number 2 actually provides care I need, meaning he prescribes dessicated thyroid for my hypothyroidism and assesses for adrenal fatigue using the cortisol salivary test (surprisingly uncommonly used in a major city in Canada).

Trying to be strong, but appointment with doctor number 2 isn't until November. Trying to figure out how to live off hubby's salary for 4 months without burning through savings too much.

Neurofeedback appt. is tomorrow, and I'm going twice a week now. Hopefully this will quickly put me back on a healing path.

I'm the only person I know who gets sicker from going on vacation because she's left her safety net, then needs to take more time off to recover from vacation.

(This has been a rank and file report). Days like this are all too common.

impervious to suffering

Well, here I am.

Oprah once stole a great question from Gene Siskel, which is "what do you know for sure". Most of the time, I know absolutely nothing for sure. I'm far too malleable for my own good. What I can say is that something that I know sometimes, is that writing can be good for me.

When I stopped posting to this blog a few years ago, the way I was experiencing the 'writing process' for posting some intensely personal thoughts to a virtual and public space became negative for me. I started a blog to document what I consider to be injustices in my life that other ppl may be running into as well, but wasn't necessarily interested in cultivating readership so much as cultivating my way of expressing and presenting what I must go through day to day.

Getting the same response that I do in my day to day life (namely, sympathy or nothing) sucked more than I had thought it would. More to the point, it triggered symptoms of PTSD (being ignored and abandoned being triggers for me).

I finally found some therapy for my PTSD that works (neurofeedback - whole other post).

The point of today's post is to pose this question:

How is it with North American culture that we have created a species of human so incapable of digesting pain and suffering in a meaningful way? The social construction of sucky and life obliterating shit in the public sphere is so white washed and IMO, leads ppl to believe that skirting and avoiding individuals who are clearly suffering and in need of support is an okay life choice, justifing a 'fuck them, I have to look out for myself' attitude. (See also: Oprah).

My husband-to-be has met me, loves me, lives with me, and has signed up for the long haul. He's one of the few who has looked at my mess of a life and thought 'she seems cool, and I can handle that shit, so we're good'. Unlike the usual 'she seems cool, but wow - too much crap to deal with. buh-bye'. I include almost all my family members in category #2. Most of his family members fall into category #1.

"So what's the deal with them" I asked myself. Well, I'm glad I asked. I think it's a skill set situation. In that, his parents are both hearing impaired. They too deal with all kinds of ignorance and crap every day and are vulnerable to attack. They get the importance of forming your own community and sticking by each other as a buffer to those attacks. Future hubby isn't hearing impaired himself, but a) gets their need for community b) gets that it's not cool for him to exploit them and c) thinks nothing of forgoing the need to 'have fun' to be their for the people in his life who he loves - call it sacrifice or not, to him supporting ppl with vulnerabilities is no sweat, because he has a skill set for it.

The rest of the world - not so much. You'll note in this article that even the 'disgusted' ppl still felt the need to run with and lament what is a socially constructed label that was laid on an infant (about as voiceless a creature as they come). Disability = burden. Case closed.

As someone who has been written off due to chronic PTSD I'd like to say this. With therapy and respect, I'm not a burden to anyone. The ignorance I face every day however is a tremendous burden to me. Please knock that shit off.

the absurdity of two years of chemical toxification

I just read in Heather Havrilesky's latest Salon column that people who've been heavily drugged can't stop from blathering about it afterward. This was stated in reference to having had an epidural.

It's completely true and achingly astute.

How many times have I wondered how to explain to ppl that 2 1/2 years of chemotherapy isn't something that you put behind you, but is more like an unruly roommate that moved in and is immune to all forms of eviction, no matter how many notices you put up or the plethora of threatening letters your lawyer writes or the umpteen trips to your Member of Parliament you make to lobby for legislative change.

Chemotherapy has entered your life and opened up new forms of susceptibility and limitations that you never could have envisioned.

i'm stupid now

chemo brain may just get the best of me yet.

my conversational skills are for shit. the chances of me ever being a desirable social option for anyone under any circumstances is untenable.

lately I've been wondering who I would have been without being made a disabled freak before I had a chance to become something else. anything else of any note whatsoever.

i really think I would have been someone interesting and worth having around.

i really do.

giving testimony

I figure that most who would read this blog would consider me to be a whiner.

First of all, fuck them.
Second of all, I don't.

Give your testimony. Injustice is the real cancer. Restorative justice may not be the cure, but it helps to heal the deeply scarred and forgotten.