Saturday, December 26, 2009

How can one be happy with a broken heart?:

This autonomy thing is awesome.

I haven't felt this free in a long time - in all aspects of my life including health. it's true, working job #2 was very difficult and I encountered more dis/ability in being able to do the physical work of the job (standing etc.). It seems that some losses are not so big when you are gifted with more, other abilities. I am so enjoying my brain in work places. This has led to a few very big decisions about my life.

I've decided to quit the retail position. That was a hard decision because the woman I worked for I've worked under at other places throughout my 12 years in that specific retail industry. It's risking saying goodbye to an acquaintance. Signing the contract for the "third job" this past week helped me realize I would still be making more there for half the retail work, and the research project is something I don't mind.

I've also decided that in my quest for self-improvement, my self-esteem is worth more to me than the money I could be making to pay this house (alone). Moving is still in the forecast, however I am feeling empowered that I get to make those decisions. Sure it's lonely (I still cry an hour a day, but after an hour I need to get on with life). The house is awfully big without my other half. I guess that's why I'm keeping myself away and at work. My cats are not very happy with me. They don't leave my side the hour that I'm here before or after work. Right now away from home and at work is where I need to be.

Which brings me to another realization. These designer drugs that I fought so hard for (at the cost of my marriage), are worth it. I have to stress, they don't reverse my heart failure, but I can do my job at work (the M-F) work. Sure I'm exhausted when I get home but I don't feel like I did even 10 months ago. Loving my work also helps. If I dreaded what I did and had to drag my ass, I wouldn't be able to work upwards 60 hours a week and live with heart failure. I just wouldn't.

So some of the big decisions I've made are about how I'm going to treat myself. For so long this past year I was so miserly, not wanting to "spend money" on things I needed because I felt those things would just be a waste (that and it wasn't all my money to spend anyay). Why buy brand new boots if I'm not going to need them in a year. Why replace my broken (but functioning) laptop (my only home computer) if it's just going to be willed to someone in a year or two. I've decided I can't live like that anymore. I'm not going to spend crazy amounts of money (I don't have) because I won't have a tomorrow, but I will "allow" myself the same privilege as most working/middle-class people else on this planet: to have an OK today with dry warm feet! So I bought myself boots, and not just any boots, but Kamik's. It made me very nervous to spend $90 on boots. I never do that (I was raised by a war survivor, we don't spend money on name brands, we don't by brand new cars or brand new clothes!).

I feel empowered.
I have no idea what the Universe has in store for me or how long It is giving me but I've also decided that I'm going to live - what I mean by that is, I am visualizing health. I'm visualizing vitality, I'm visualizing a slowing down of the degeneration, I'm visualizing these meds opening my airways, and I'm meditating more.

Sounds silly I know, but this was exactly my field of study: psychoneuroimmunology/ spiritneuroimmunology before I changed my thesis (to be more work related: creativity and addictions in relation to stages of change theory). Your mind does impact your body. I'm living proof, I was supposed to die at 2, then 9, then 12, then.... you get the picture. I'm a stubborn ass and might as well put it to good use.

My final realization of the week: if I can't have what I've lost, I might as well give myself something I never thought I'd get. I'm taking my self on a pilgrimage. I have a few destinations in mind but the where at this point is not important, the decision is. By the end of this year, by the grace of G-d if I'm still well enough to travel I'll be flying across some ocean some where. If I have to scrimp and save I will, g-d knows I've lived off a tighter budget before.

I'm excited. Heartbroken, but excited, happy and free.

Friday, December 18, 2009

making up for lost time?

I'm not quite sure what's going on with the Universe. I'm wondering if She's either trying to make up for this past shitty shitty year or if It's trying to make sure I don't feel so lonely and unwanted before my health declines further.

I just got another job offer from a job I didn't even apply to (a job I did a year ago wants me back). And I'm actually considering it - for 2 minutes I found myself trying to see where in my schedule after my 50 hour week I could squeeze another 15 hours in. I do need the money, and I could pay off my entire burial by March, but it could also be by April that I would need it if I do this to myself. I don't have another house-mate and without my ex's portion I am now screwed to cover the entire "rent". Yeah, I'm resentful that she could just walk away from all these responsibilities with just one easy signature. Jerk behaviour aside, I'm now stuck with this financial responsibility. I don't have the luxury of just running away from responsibility. I've always had the weight of the world on my shoulders and a sense of responsibility that sometimes doesn't even belong to me.

That weight has always caused such stress on my system that now I am forced to either stick to a meditative practice or let the stress get to my heart. I'm not suicidal so my choice is to find a way to deal somehow and not run away like some people can choose with such ease and lack of consequence...

Two of the jobs are actually jobs that require my education and or training skills - you know, decent pay (well, low cuz it's in social services but a hell of a lot more than I've been making being dependent on a partner). The other jobs is, of course, retail - mainly because it's the busy season and it was easy to get. Thing is, I've done a few shifts now and I can't for the life of me see how I'm going to get through. A year ago I did retail (also before the holidays) and I was purple by the end of the 9 hour shift. Now I'm purple by hour3 standing on the floor. It's doing the same thing a year later with less stamina that shows me exactly where my increasing limits are highly noticeable. It makes me sad - it limits an entire world of "easy and immediate" jobs. That entire world is now gone if I'm ever stuck needing employment "now". If I wasn't already heart-broken, I'd say it's a bit heart breaking noticing yet another big limit. Compared to the mutli-holes in my heart, really, retail is not a big loss (just the decline in ability).

As mentioned above, it's not like I can quit this job despite my inability to physically do it. I'm screwed for money. I'm left picking up the very costly pieces.

I know I need self-care, I know I really need to be careful, I'm "disabled" but I also know I can't bear being alone in this big house, alone with the devastation. So I have to fill my time or I will spin into misery and finally I'm at a place where I can say, it's not worth it. Not because she wasn't but because I'm worth more than this ping pong treatment, but because despite who I became while with her, I am still worth treating with dignity and respect, for as long as I live. I, like everyone else, is a child of g-d. My heart will be going into a big locked case - how could I ever trust someone again, not just with my heart, but my health? My health is something very intimate for me. Until last January when I was in the Heart Institute I didn't share so much about my condition. I only became more open because of the woman who took care of my heart (physically, legally, emotionally) because she couldn't do it alone anymore. Nor should she have to. No one person buries another. A community needs to step in, get them through. Now? I have to take care of all this from the living end so strangers can follow a paper. I will be so relieved when I have my own plot, when I know if nothing else, I can bury myself. What relief that will be (but it still saddens me that it won't be 'her' following those papers). She was supposed to build my pine box (we Jews get buried in simple pine boxes, and I as a witch also like the simplicity and ecological aspects of Jewish burials).

Humans are full of "supposed to's". Don't let your life pass you by filled with supposed to's. Life is too short, love is too precious. And no one really realizes it until it's too late. Because there is such thing as "too late".

Wednesday, December 9, 2009

the in-betweens

When you get to the evening of your life (the last third) you start marking the in between moments such as half birthdays. Today I'm thirty six and three quarters.

Today I also received my total drug consumption (from the speciality pharmacy that dishes out my DD's). In ten weeks I've consumed over $10,000 worth of meds. It's sickening and scary that medications cost that much. That's fifty-two thousand dollars a year. For that I could have a new heart and lungs.

So for my 36 3/4 birthday I stomped through our first snowfall combined snowstorm. I wasn't really ready for this impending winter because it was not even one week ago that it was mild enough (at the beginning of December) to burlap my trees without instantly freezing. Usually that little of a transition is havock on my lungs. Today, not so bad.
This week, not so bad. I still find I'm getting out of breath negotiating the snow banks, but I'm impressed. For 10K there better be something noticeable.

I've been gifting myself with time. I'm filling my schedule again. I am now entering a period of working 7 days a week at 2 jobs both of which are new. (It's out with the old, in with the new).
I'm purposely filling the time "my" tribe has left me. I save my time for true friends and that time is sacred to share with them since they're still here. I'm saddened by the loss but comforted by those left who are here without judgement - those with love in their hearts. However, there are times of loneliness that I can't bear just yet and so I've filled it - if not with work, then with the research required at work 1. But I'm excited. So excited, that even though I am in the evening of my life, I can rewrite everything, give myself what I couldn't get from my significant other: time. So, on my way to work I gift myself with listening to (yeah yeah) new agey meditations and spiritual audio CDs. Not only does it help the milk-run pass much faster, but I'm believing again what I should have believed long ago: I am worth more, that I've supported and and given so much this past year and now I have to support myself. No more free giving, only freedom.

And more is coming.
I have hope again, I have connection again - to something much more important than some mortal that just couldn't live up to love. I'm connected back to the eternal.
And whether She takes my life in 3 months or 3 more years, today I live to my potential, not limited by loneliness.

Afterall, we all die alone. So why should it bother me that I will die alone. Why should it terrorize me? Hopefully I will be at job 1 long enough to earn enough to buy my plot. After that, it doesn't really matter, because if I can burry myself, in the end, that's all that matters. No more leaning on people I thought were there 'till the end. There is no such thing. People are human: they judge, misunderstand, take sides, do whatever it is they do because that's how they are, forgetting that time is precious and that we're here to love.

Me, I'm going to make sure that my advanced directives are always with me because afterall there is no one to call anymore in case of emergency. That makes me sad, but I have enough to be sad about. At least being able to give myself a plot I can be rest assured I have a place to rest, eternally. And I might need that after working 7 days a week!

Saturday, December 5, 2009


Today's reading was about a woman (can't recall her name) in Genesis who was "taken by force" (ie, raped) and then to "make things better", the families involved traded her (like property), off to another man so that she could at least have some form of life, because, in biblical times, if you weren't married (read, wife and mother), your only other oocupation was whore or concubine. Thing is, it may be a few thousand years later, but unmarried middle aged women aren't really respected. I mean, we're 'accepted' as a common phenomena now, but it's very hard to be single and middle age. Especially when you just came through a 10 year realationship.

When you're an established couple, couples do things together. Couples and singles rarely mix. All those Sex and the City girls, most were single. The singles mix with the other pathetic singles, and the couples, in their own circles. Through in a disability or health challenge and you fin your circle becomes even smaller. The people that were there for you (the couple you) no longer want to be with you when you're single. It breaks the groove: couples and singles? What, I don't think so. For whatever reason, single middle aged women are screwed, both four thousand years ago, and now in the "modern era".

What does this have to do with Truncus Arteriosis? Absolutely nothing, and yet it's related. Most of the TA patients who are not married, are either still living with their parents or expected to. Many of them also have other things like Aspergers or Downs as a complication to the heart stuff. It was thought that I was a "high funtioning" Asperger, but I was stubborn enough to prove everyone wrong - that I could function (ok, somewhat) and make (something) of myself. I am fairly independent, yet for a lot of other things, I was admittedly very dependent on my spouse. First mistake.

Then, I started trusting that there really is validity to this thing called "community or tribe". Second mistake. While it exists, and works well for those in couples, for the poor single girl, you're out. Al the overwhelming love and support during Thomas' passing is all but gone. While it was a beautiful thing to witness, it as in the end for the xWife, because now, it's all but gone. Single middle-aged women are alone. No wonder they latch on to work.

I decided 2 weeks ago that I didn't want to rot away in some social-service-crack house. Now whether or not I have the health enough to work full time doesn't really matter anymore. I went and got more jobs. So shortly I'll be working 7 days a week - if nothing else, I'll be able to support myself until I give myself a heart attack. But at least I won't be alone. I'll have "coworkers" (I'm sorry they don't replace the intimacy, trust and support of good freinds). I am so my father's daughter. My father was a work-aholic. I resented him for it - I didn't have a present father because of it. He travelled a lot and I was basically raised by my mother.

Wednesday, December 2, 2009

9 1/2 weeks

It's been nine and a half weeks since I started these Designer Drugs. They haven't miraculously cured my heart disease - nothing will do that except death or perhaps a heart/lung/liver/kidney transplant.

They have given me a little more fake energy. I call it fake because I now feel like I can do things, but when I go do them, within a few minutes I realize that no, I can't lift that 15lb box. (well, I can out of necessity but that I'm still gasping for breath and creating pain in my heart and lungs. This is what being alone does to ya.)

This fake energy has helped my emotional state go through this hell. At least I believe I can do it alone (even though I can't). Belief is half the battle.