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

shul

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.

Tuesday, November 24, 2009

I'm not really sure why I thought my life was worthy of memoires. That was the point to writing this blog: that one day I would have enough entries and writing to gather up for some sort of memoir about living with this rare congenital (and unfixed) heart condition. Who did I think I am?

Friday, November 20, 2009

worst fears

My worst fears are playing themselves out. I don't fear dieing young - it isn't easy but it's happening.

I don't fear dieing in a hospital - it's not my ideal, but I can't control it.

I don't fear dieing in my sleep - OK, some nights it terrorizes me, but in the end it would be a nice way to go, just not for the person who has to wake up beside me.

I do fear dieing alone, of a broken heart both literally and metaphorically. And that's what's happening.

Some days I don't know which hospital I will end up in first: the RO or the Heart Institute. Between the tachycardia (brought on by stress/loss) and the actual stress I'm one big ball of BROKEN. And I'm alone in that brokenness. Well, I do have a few friends on my "side" of things. Everyone else, gone.

This year has been a record year for loss, from losing my future with my cardio-man telling me this is the last chapter in January, to financial loss (I had to dump 2 jobs due to my health), to losing Thomas, to losing my legal footings (power of attorney etc.), to losing a long-time dear friend through a move, to losing my home and my life mate to losing my "community/tribe". I'm shocked actually that I'm not in the RO right now. Even if I was, there would be no one to make decisions on my behalf.


The only 2 women I trusted enough to not take sides and be my power-of-attorney (for care/hospital stuff) are far from my heart. One now lives 7 hours away and the other is moving away. The security I thought I had about my health and the decisions that would be made/carried out when hooked up to a ventilator (if I even get that far) are no longer secure. That scares the shit out of me that except a piece of paper with my instructions, no one will be there. No one will be there. No one has been there (OK, to be fair, 2 of "my friends" have been. But no one, no one of "ours" have been). Yet another loss.


No one will know if I die alone. I don't have that many friends and that facade called community is disappearing with the woman walking out the door. Splits definitely divide "friends". It's sad that blood family really is all one has - at best. Friends and community, as I'm learning, as much as there's investment and built up parameters, are just that, a facade.


I looked at an apartment in a "crack house". Alraight, it's not officially one, but it is designated social housing. My name miraculously came up on the social housing registry (I had put my name down about 7 years ago and the timing couldn't be better! I have no income, no wife, no life). So I visited the place/offer, and it's OK, I can even have my cats with me. But all I could envision walking through the place was me dead on the floor and the only reason someone would know would be the stench that my neighbour would smell. Living alone and dieing alone is my worst fear and it looks like it may come to fruition. Yeah me. This is what I spent all those years building, investing in, only for her to leave me?


Granted, we never did put ourselves first, we never found the money in our tight budget to put towards counselling to help our issues once and for all. We've always been rocky - that's no secret to anyone - but we've *always* been there for each other. Only I've been shut out of her grieving process - yet I shared mine (about my health). I think there's only so much outside stressors a couple can take before each of the people involved crack. I cracked, I behaved badly, she cracked and pushed me away. The she said she said is not important. What I'm writing about is insurmountable loss that humans can't get through healthily without community, friends. I no longer have that. I suppose I never had that - perhaps people were always her friend and I was the tag-along wife. That's the feeling I'm left with. Not sure and don't care; just left with heart break. I just know how alone I've been purging my life, packing it up. It's a good thing I started (slowly) purging when I got sicker - but it still hasn't made it easy. It seemed easier to purge stuff when I knew I no longer needed it because of the shorter life journey. It was my way of making things lighter for my (wife) when I left this planet. She wouldn't have so much of my physical stuff to deal with. (Aren't I always thinking of others?) This purge is much more difficult. It's a "I can't carry this to my new social housing unit, because literally, I can't *carry* this, so I have to part with it. That's tough. Especially when it's not my choice.


So in the end my worst fears are coming to light. I'm dieing of a broken heart. We all knew that, but now I'm also dieing of a broken heart - 10 years; she has my heart, all of it.

unsure

Not really sure what to write these days.


I feel that my health is stabilizing -that's about the only part of my life that is.

Everything else is in flux - and I mean everything.

It doesn't help that I've (we've) had a year from hell. Just when we thought we could gain some grounding, another crisis/trauma. It's finally taken it's tole. I've regressed and can no longer live with it. Melissa Ethridge's song "Breakdown" is my new theme song.


Somehow I have to find the physical strength to whittle down and move a house-full of stuff. That part's not so hard since I started purging knowing that I only had a few years to live. Now I look at "objects" and think: if it's not going to be used in 6 months, gone. It's freeing but sad nonetheless.


The worst part is I've lost half my community. I'm going to be starting over but not from scratch. I'm left with whatever pieces will make the trip.


I have provincial funding now for my expensive yet life altering (ok, a little exaggerated there!) Designed Drugs. The day I received the letter was bitter sweet - it was the same day I received some personally devastating news. (Just add it to the pile of 2009). All that effort, and I finally have the funding. I still have to pay a deductible, but I'm not so worried as I will soon be on the system, where they will take care of it all since I'm as close to financial (and emotional) bankruptcy as I'll ever be.


This is not how I ever saw my life - then again, I also thought I would live to at least 53 (although I did imagine wearing O2 full-time as I blew out all the candles). I thought I had enough stubbornness in me for the fight. That saying "the universe doesn't give you more than you can handle" is complete and utter hog-wash. I am not handling much these days, in fact, since Thomas' passing I haven't been able to handle the day to day. I suppose that's why a simple pig-flu knocked me out cold (then again, it doesn't help that I have these underlying conditions that complicate everything, and I mean everything, in my life. I can't run from it - it's in me, ticking away ever reminding me just how fragile everything is. You'd think it would evoke a zen-like state of gratitude, but it hasn't. It's manifested itself as anger, then add anger to losing Thomas, then ... will it ever end?

Friday, November 13, 2009

sometimes

Sometimes the universe gives you much more than you can handle. I don't believe in that saying that "g-d" only gives you want you can handle. I thought I did but life just keeps getting tougher and tougher and my health - all aspects of it- keeps getting more fragile. Some days I wonder how I haven't broken yet. I guess I've been lucky enough to have good people around me helping hold me up. Other days I feel completely alone not knowing where to turn to. When my health is low I feel a surge of panic. It has only continued to snowball downwards. It plateaued during the summer when I had to be there for someone else. Now that it's my turn to be here for me I find my energy wanes, I'm spread out so thin I don't know where the real me is some days.

And the irony is I'm more mobile with these designer drugs now. I am not leaning on my cane as much, I have better health days (although the days filled with pain are distinctly worse). All this additional mobility has to manifest into more energy for the next traumatic chapter of my life.

I hate transitions more than staying in the pain itself.

Friday, November 6, 2009

my life with the virus - the pig-flu

There is absolutely no real information on H1N1 out there. Sure there are pamphlets about how "its a different kind of flu season" out there. But all these pamphlets and government written info sheets provides are tidbit on vaccinations and hand washing. There's no substantial information for those who have it.
And no, I don't have an official swab-test diagnosis. That's because there are next to no places in this city doing the swabs or tests (unless you go directly to the hospital from your family clinic that way the test justifies admissions. I was at my family doctor's office on Monday (although didn't get to see her, even though she was there) where I first got Tamiflu. I'm on my last day of Tamiflu and now have a wicked ear infection. A friend took me back to the clinic today (the wife is passed out, sick too, and my mom wasn't home) where I got antibiotics and even requested a swab - so that I have more information in which to make my decision about the vaccine once I get better. The nurse's attitude was "what decision; you get it". Hm, I thought we lived in a democracy where I had the choice! Seems like even if I wanted the information to make that informed decision, I won't get it. The way I see it, I don't need the vaccine if what I have is officially H1N1. She said it is, of course, she can't say it because she doesn't have the culture. And I won't get the culture because the system is broke, busy and backlogged.

OK I get that.
It's so backlogged and tired that I got 2 Rx's for antibiotics today. I was to fill only one but she gave me 2 because one drug is significantly lower in cost than the other. So the doctor that gave them to me is not a regular to the clinic, nor did she have access to my file (she saw me in the supplies room, that's how bogged down the system is). That's dangerous.

So dangerous that had this woman looked at my chart she would have known right away not to give me one of the scripts that is contra indicative to my designer drug. Lethally contra indicative.

Either way, I'm getting really tried of any good information out there. I'm tired of all the paranoia that clogs up phone lines for 6 to 7 hours just to ask a nurse a question - when one already has it, not some paranoid fear-based questions. Which, OK, are valid but there are people trying to live through this vicious thing! So my pharmacist from the Designer Drug program called (mainly because of money issues) and when I told him what as up he got all serious and gave me some real information. Finally. I now know what too look for (and pray doesn't happen) and how long I'll still be in danger for, for real. Apparently even though the fever is gone, doesn't mean I'm out of the woods. In fact, even when my last cough is gone (or ear infection etc.) I will still be in danger - up till almost 2 weeks after I think I'm out of the woods.

I have to admit, as much as I think I'm a tough little cookie, that kinda scares me a little. I've only heard people like me (with underlying conditions) die from this virus. I sit here with all my Western & Alternative meds pumping through my body on full force for nearly a week now and know from this past week just how vicious this virus is. I've never ever felt so at mercy of an outside illness.

Monday, November 2, 2009

hopefully just another health scare

I'm not feeling eloquent at all, but thought I'd post because if this stupid H1N1 takes me then damnit I'm going out with a bang.

I haven't had the flu in a long time, like over 6 years long. I do all sorts of naturopahtic things (not including the flu vaccine) to help keep me virus-free in the winter.

Well, if I didn't speak too soon. A few weeks ago I was feeling cocky so decided to give away part of my secret on FB. Yeah, tempting fate. (Or whatever the hell is out there).

This is the first time since Sat. that I've been able to lift my arm - I look and feel like a train wreck. I was listening to the news last night (or maybe it was the night before... dunno, it's in the background to keep me company) and the city is now telling people that they will be turned away for the piggy-flu vaccine if they are not high risk, but get this, aren't going to require proof. They showed one mom who said "if my kids can get it I should too" then they showed another mom who has som eunderlieing condition and a son with H1N1 say "I hope you remember people like us when we take sick and die". I feel for her. Even IF I wanted the vaccine, too many people who think thye're high risk ("oh I work wit hte public") take up the space and contribute to long line-ups. Someone from my extended community here in Ottawa was saying "oh I"m going Friday to xyz clinic". From what I know she is completely and totally healthy. It pissies me off because she is also the same person that posted allt he "pro-vaccine" info calling us that question it "conspiricay theorist".

Whatever get a life.

And so now I"m sick, my fever has only gone up and has stayed at the "I must go to ER" but well, most people who go to hospitals (with chronic shit like me) come out worse, if alive.

Yes I'm on tamiflu- my wife dragged me (I couldn't lift myself alone until an hour ago) to my dr. this morning to get it. I'm damned if I do, damed if I don't.

My cardio-nurse wants to make sure the virus hasn't gotten into the heart lining cayse that (endocarditis) will cause death.

Oh. And Thoma's cause of death "myocarditis" - infaction of the heart muscle (another layer).

I"m gonna crawl back into my deth bed now.

Tuesday, October 27, 2009

Just because

you don't have the answers doesn't mean they're not there.

Thursday, October 22, 2009

Thomas' story

I've done it, I have finally written mine and Thomas' story (a draft mind you). I've had this need to write about us, our relationship, since I arrived back from the drama-trauma. I think I'm identifying as a writer now - because it seems I need to write things out to process. I'm a story-teller and telling stories, even if no one hears them, helps me heal. It helps to narrate what was in order to make sense of what is.

I'm hoping that painting (as my mode of expression) hasn't gone by the wayside. I did buy some wood yesterday (to build stretchers). I was inspired on my shabbat-candle-lit labyrinth walk to paint some mandalas on canvas. But yes the story, I've written it, all 7 pages of it. That's 3,800 words (unedited).

I just wish academic papers come this easily and quickly.

I may post a link to it once it's edited. It's too long to post here. I feel very very tired now, it being almost 3am. My Wife left for Van today to bury the ashes. The headstone is ready. I almost feel envious - that she gets to say goodbye. I think that's why I started writing as soon as I got home this evening. I'm hoping to use it in some sort of ritual. I need to formally (ritualistically) say goodbye. I wrote and wrote and hadn't stopped except to wipe the copious tears away. It's starting to settle in, that fact that he's gone, I mean.

I'm eternally grateful my class doesn't start until late morning!

Wednesday, October 21, 2009

healthy people don't spend this much time chasing eds!

It seems I know how to dance around the system if not momentarily. I spent the past two days on the phone (literally) and visiting my Cardio-man to somehow figure a way around the mess of bureaucracy. I'm not completely unsuccessful. I somehow managed to secure this month's shipment of medication due here tomorrow at 10am. There's still loads of paperwork that needs to be done but somehow magically they seemed to be satisfied that the paperwork was at least in motion (or, perhaps they were tired of my persistence/pestsistence). That's the thing about me, don't tell me I can't do something because I'll not only prove you wrong, I'll go out of my way to do it.

That stubbornness has worked well for me (for the most-part). I hate that my life isn't easy, but then who's is? I hate that it takes negotiation to get the medication I need (and at this point I don't even know if I need it. Even Cardio-man is on the wait-and-see bandwagon).

So I'll wait and see. My next does is twice the first starting does. I'm afraid to ask how much that is. For now, I've "bought some time" until more papers are processed, stamped, etc. All I know is that this weekend I am having a "filing party". Anyone who isn't scared of paper I'm inviting me to help make sense of my Wife's files - and this is the best time to do it. She's in Vancouver, burying her son's ashes (the headstone is ready). She won't be here to stop me: she's possessive of her filing style. I can't deal with it. Organization here I come!

Monday, October 19, 2009

when you're at the mercy of others

I'm a Pisces - I need water. My moon sign is Taurus - I need a forest.

(It also means I'm emotional and stubborn). All this I know about myself. And I've usually had a weekly date with the river or a walk in the forest for most of my adult life. I couldn't tell you the last time I was by the water, in the forest. Well, actually, I can and the only reason I can recall even though it's been over 3 months is because it was by the ocean (the best body of water by far) and in an old-growth forest (the best trees by far).


I haven't made time to walk in nature, nor have I really felt safe enough doing so since women started disappearing near my corner of the river. I miss nature, so after work today I stopped by the river - a not so private place - to walk and sit. This same path I strolled with cane in hand today is the same path I used to roller blade along (yes, I used to roller blade!).


Although today was a gorgeous fall day the wind picked up by the shoreline. Leaves skipped across the river and the reads bent over towards the water. At one point I couldn't tell if I was shivering due to the autumnal breeze or the upset in my heart. I think it was a bit of both. Water used to clear my mind - today it made it murky, buoyant, unsettled.


I spent the better part of the morning on the phone back and forth with the pharmacy in Toronto and the "DD patient support program" trying to figure out why my drug wasn't delivered. (It's been 28 days, time for a new box of $3,965 worth of meds). Honestly, I knew why they weren't delivered: I owe them over a grand. I just didn't understand how I would pay that, or why the provincial pharmacare had not yet bridged me in. Frustration increased as I realized that all the paperwork had not been completed. It seems that they are missing stuff from my wife. Paperwork I requested from the Wife over a week ago. Ah yes, the woman who has no inclination towards her own health is now impeding mine. Granted in all fairness I knew this about her when I married her. So yes, it's my fault for expecting anything different. Of course, I was naive enough to think that would change, that I would change her. Perhaps the gravity of the situation would warrant action, perhaps my filing system would be adopted. Perhaps nothing: in the end I sat by the water realizing that no matter how much pushing I do to get things done - not matter how grave the situation is (um, meds for my health!) things won't change. I expected anything different?

Silly me.

Silly me for thinking that, to quote a dear friend "you gotta take care of the living before the dead" is a known concept.

Silly me, for thinking I had any control.


So my Wife is leaving for Vancouver in two days - the headstone is ready and she will bury her son's ashes. I completely understand that she's been a mess the past few weeks. I completely understand how important this is to her. What I don't understand is how the already dead comes before the living.

It's too late for the meds this month - for now. (You know me, I'm stubborn and I'll find some way to get them... it may take time though.)

I never did get that delivery this morning. I'm sure I will be on the phone all morning again tomorrow trying to reason and figure some way around my wife's missing documents - documents which I asked for last week.

In the end I'm really not sure why I ever expected that my health would mean anything. I'm fully aware that her health has never meant anything and g-d knows she's had many warnings (her younger cousin had a heart attack last month). Sometimes these things fall on deaf ears. Sometimes you just gotta deal, and sometimes you have to find away around someone else.

Sunday, October 18, 2009

So, we're looking at Genisus - the creation story. It's that time of year again, the torah's been rolled to the beginning and now we're reading "the beginning". The past few months, I've read that story over and over, trying to make sense of - anything, everything. I'm not sure I believe anything anymore. Now, of course I don't take the creation sotry literally. Like any creation story in any religion it is, just that, a story. It's a way to conceptualize how the world was made. Be it spider woman, adam and eve or the big bang, they are all just stories. We use story to narrate our lived experience. True or not. (Besides, one 'day' back then could have been 1000 years, not 24 hours like we conceptualized).


Everything it arbitrary. Everything is so only because we think it. Not because it actually is. When my wife chooses to believe her son is contacting her via a shooting start - it's just that, a choice to perceive things the way you want to see them.

I used to believe in past lives, reincarnation and the spirit world. My creator wasn't the abrahamic dude with the white beard sitting on a cloud: anyone who's been on an airplane knows that's just a story. But I did believe in some sort of energy field that's bigger than us. Now, even science isn't science. It's only perception and interpretation of observation. That's all.


Now I wonder if we aren't all an illusion. We're here only because we say we are. We've created such a mess in the universe. We send people to the moon to blast it apart looking for water yet we continue to dump toxins and garbage into our own oceans. We are building a space station so people can someday live 'up there' but we can't build affordable housing for all human beings. We are a messed up species - and we continue messing things. We continue repressing others, controling our precious resources, hurting our animal friends, etc. etc. There are countless human atrocities that make me wonder: why are we here and how long before our stupidity will bight us in the ass?

Perhaps I'm having an existential crisis. I have no idea. I have no idea why people believe a shooting star means that their loved ones are saying 'hi'. Why do we hold on to such silliness?

For comfort?

There is no g-d, no creator, no spirit of the universe, no goddess, no nothing.

And this makes me very sad.
Partially because it makes me feel so alone in the universe - disconnected to the human race, and partially because my work has been based on spiritual connection. The phenomena of creativity is not expempt from the relationship to the spiritual self.

So now what?

If g-d didn't take Thomas away (as an acquaintance proudly boasts) then what is all this about? After his heart stopped beating, his white and blue corpse lay there - where did 'he' go? Where will I go in a few year? What happens to personality - why is it so different from spirit-self. Why do we have a spirit-self if there is no g-d.

If Buddha was right, that we try to attain enlightenment, then why do so many millions of people seek fulfillment through the acquisition of things? Why do so many millions of people buy into the belief that XYZ object will satisfy the seeking soul?


I used to find my place in the universe in nature. It's the "pagan" in me. Not that I worshipped nature perse, but that I recognized its reverance. I haven't spent much time in nature - the princess in me has become quite the city girl. I love my Lush baths, my automatic dishwasher and my ability to be mobile sans auto if need be in the city. I don't own rubber boots. Squishing in the mud has taken on a whole new meaning now that I own a home with a backyard. It becomes work. Transplanting, moving stuff around in the yard, sho-ing squirrels away.

Friday, October 16, 2009

OMG -DD

Just got off the phone with my DD pharmacy... apparently my designer Drugs are $4000 ($3965) a month, NOT three!
What killed me was that she told me what MY balance was: $1200. My wife's insurance only covers 70% of it and only for a year. So of course, I've been waiting for a stupid letter from them to send it to the provincial plan so I can be bridged. That letter still hasn't come in.

I nearly swallowed my tongue when she said "your balance is..."
For four thousand dollars a month these drugs better do more than open my lungs up, they better reverse the death of my left sided-heart and slow down the demise of my right. As if!

Then I was told that the provincial program requires that I too pay out of pocket... I hate paperwork. I hate that on paper it looks like we have enough to cover what the province doesn't but those paper-work tabulations never take into account student debt, other debt, house-hold expenses etc. They see that mortgage is covered, we're OK. I am so tired of being house-poor. I'm so tired of all of this. I've applied to the feds - I will keep applying but I know just how long it takes to get in and in the meantime I'm still living with illness. It would be nice if it could just go away for a week. Ah fantasy world...

Monday, October 12, 2009

being second-guessed

I'm really glad I'm a reader - that I have been reading memoires written by other people living with illness. It's helping me figure out what happens, when things that make me uncomfortable happen. I know every situation is different, but their seems to be general patterns that human beings fall into.


Let me explain. I was in a situation recently that required my physical participation. I couldn't do what was asked of me, infact, I couldn't do most things that were asked of me for the days preceding just because I was either in much pain, just wasn't up for it (mentaly exhausted), or knew I had no stamina. (Keep in mind I am the type of person that would go into work even when in pain- if I didn't go anywhere because of it, I wouldn't have a life.) So, here I am, knowing my body, which, you'd think is a good thing. G-d knows I rant about knowing your body. So, I knew what my limits were. Before this required participation I pretty much cancelled, asking that people in charge find a replacement. Well, what ensued was person in charge not taking my no for an answer. I kept repeating my no to the point that I was brought to tears, humiliated that "pain" would hold me back.

I have now officially entered that time and space I've read about by others living (and died) with illness. In the memoires I've read these negotiations with healthy people read like a tug of war - with healthy folks not at all respecting or understanding what NO means. I recall sad parts of memoires where kind-hearted and well intentioned friends or accomadating bosses at work would try and get the sick person to participate but all the while negating their boundary - forcing the ill person to almost vomit up the pain in terms of tears. And that's what happened to me - I was brought to tears, not because of the pain (which I have my own pain management system) but because I was not being heard and I was being second-guessed by someone in my world.


It felt as if the sick person doesn't really understand what you're saying no to and you need a well person to outline why your no is wrong and why you need to change your mind and participate. It's completely disrespectful and hurful - it shows the sick (in body) person that you think they're sick in mind too, not allowing them to make their own decisions and then questioning them when the decision they make for their health is not the one you want.


And that happened to me recently - and it sucked.

And as much as I know that it came from a place of inclusion - of trying to be included in whatever job/outing it still did exactly what I knew would be coming one day because I've been forwarned - thanks to other sick people who decided to take the time to be honest and write about this shit.


Thursday, October 1, 2009

I can breath! I can breath!

If this is a tiny glimpse of what this drug can do, bring on the vomiting -it's a small price to pay to breath I say.
Today I felt something I haven't known for a long time: the tips of my fingers, talking without getting out of breath, and not feeling like 20 pounds are sitting on my chest.
I felt 20 again. For once in a very long time, I don't feel 85. If I weren't so old, I'd go out dancing!

I hope this doesn't pump up my expectations. I cross my fingers that this is something I have to look forward to. Last week vomiting seemed a high price to pay for feeling the way I did. Today, not so much. My eyes felt clearer (could it be, they're actually getting oxygen to them?)

Again, no hopes (but feeling my fingers felt awesome!)

Wednesday, September 30, 2009

DD week 2 & silly MD's

So, it's been a week. Some side effects have already started, some have not. I keep reminding myself that it's supposed to get worse before it gets better. I've had days where I've been in pain throughout most of my body - the edema gets that bad (feels like it's February again). My Wife, kind as she is, offered the only medicine she knows: western medicines. I haven't taken any painkillers not because I'm a martyr, but because I don't want to start the vicious cycle of being medicated 24 hours a day just to treat the side effects from the primary medication. I will, eventually, find a way to live through it. I always do. Whether it's my funky Asian patches, relaxation, massage or what not, I will continue to resort to "something else" rather than chase the pain away with more meds.


Then there's today. I've felt nothing but really really good. In fact, I was out at a group activity this evening and a friend commented on how (good) I look. Maybe it's the new hair, maybe there are good days to meds. Either way, I'm told not to expect anything (positive) for months. So, I'm letting go of expectations (but secretly preparing for the worst). And apparently not all side effects appear in the first week. Some can sneak up on you. OK. fine, I'll deal.


Last week I was a little freaked out at starting these things primarily because I'm a control freak - yes I know I am! I like to control what goes into my body and how it reacts. That's one of my aversions to medications: once you swallow it you have no control. If you don't like it you might be able to vomit it up, but really you have NO control over it. Patches and ointments can be washed away. Accupunture can be stopped mid-session. So can other non-invasive treatments, but meds, nope, there's no stopping them. Taking these things wasn't just about dealing with side-effects, issues of funding etc., it was about the lack of control that I have. And I do not give that up easily! I'm not one to surrender easily, which has really stunted my spiritual development. That's about turning to (your) Creator andnot taking on anything more than what's yours. Some days I think my shoulder scholiosis is due to the weight of the world just sitting there!


I had a doctor's appointment this week of course. So yet again my blood tests caused some a alarm. When do they not? Anyway, these had nothing to do with my heart - the dr. was freaking out over my unusually low blood-sugar. Um, well, that's no news to me. I've known I'm hypoglycemic since I was about 16. Apparently me knowing it isn't enough - they want to know where the official diagnosis is and why I haven't had one. Probably because I won't go for the tests. I can't fast. I won't fast actually. I know what happens. I had to fast for an ultrasound last winter and by the time I made it to the labs I was in a (low) sugar shock. I was initially mistaken for a drunken idiot until I had the wherewithall to lift my arm and expose my medic-alert breacelet. Next thing you know the nurse handed me a glass of OJ just as I had hit the chairs.


Anyway with regards to this dr. wanting an "official" diagnosis... all I can do at this point it laugh. I mean, really if my levels are low withouth fast do they really want to have me fast and well, pass out? And what good is the "official" dx in my chart when I've been living like this for 20 years. I just told her that I did not now need a number to tell me when I need to stop and eat since I am well aware of the symptoms after living this way for 20 years and all. Sometimes doctors really are full of themselves, sometimes they don't trust that the patient trusts their bodies. Sometimes they need you to depend on a machine (blood strip tests) to tell you what you already know.


At this point in my life, with all that I'm living with dis-ease wise, I couldn't be bothered to humour them and give up another day so they can have their numbers. Didn't take me serious when I was 16, why now? and which sponsor is pushing the newest sugar-testing machines?

Tuesday, September 29, 2009

Yizkor

You don't think about it until it affects you. Death, disability, loss. We all know life is full of loss, and according to one of the primary koans of Buddism, life is suffering. It's so much easier to go through the motions rather than fully show up - that would require paying attention, much too much attention. And we modern humans just aren't able to slow down enough to do that.

Monday was not my first Yizkor service. Since before my conversion I attended these as part of the whole High Holiday line-up. Monday was however my first blury Yizkor. Just the evening before I asked a patient friend, what exactly was invovled during the service? I knew what went on, but I suppose I needed to know that it was OK for me, as a "step" mom to mourn. Since Step-son's heart "attack" (ie, before he even died) I was not given permission (by my inlaws & outlaws) to have feelings of remorse, nevermind express them. (That story is still not far enough away -in time- for me to write about but trust me, it will get written). Not for me, mainly for him & my Wife, his mother. His more-than-birth-mother. The woman from who's (between) legs he came and who's arms he died - that woman.

Anyway, my patient friend briefly outlined all that was to be involved so that I could make the choice for myself. It seems that whatever we did the year before escaped my mind and heart. So I'm glad I asked. For those who are not Jewish, it's the memorial part of the ending of the Yom Kippor (day of atonement) services. And of course, if it doesn't affect you, it's usually another set of prayers and readings you go through the motions for.

This year I holding my mahzor in one hand, and never without a tissue in the other. Loads of congregants lost loved ones this past year (or maybe it's that I finally started paying attention). I felt like the only one who couldn't keep it together though. Later, after receiving a warm hug from our student rabbi I realized that Step-son's death happened a mere 10 weeks ago. It hasn't even been 3 months. The deceptively cold weather and the ripening reds and yellows of the leaves trick me into thinking it was a whole other season ago that this happened. And it was. But our Canadian seasons are so short that it still hasn't been 3 months. It's been a long ten weeks. The space in which time travels and takes has definitely shifted. In our house time is now marked by "before" (his death) and "now". Some days I'm compelled to look at his picture and aks him why? Other days I realize I can no longer watch my favourite CSI series anymore. Too many people die in them and death is no longer entertaining.

It's starting to get cold out there. I felt the north wind on my ears today as I walked to the bus stop - but inside I'm starting to melt. The time and distance away from all the crazy people in that hospital room is helping me get my own time and distance to make sense of things. To no avail. We still haven't heard results of the autopsy. I'm not sure if we will ever be given the 'right' answers to our one question: why.

I'm reading about writing right now. Part of my graduate work (ok, most of it) has been about creativity and recovery - revovery in the traditional sense (from chemical dependency) to the non-traditional: re/covery, dis/covery and re/storying the self. My finale project is to write a curriculum and programming to deliver (to different agencies; my advisor is practical. She's been the only one to let me make this into a work/workable project). I love what I'm reading and yet I hate it. As I read how writing and creating (arts) help all sorts of people to un-cover, dis-cover and re-cover themselves, others, and the worlds around them, I too am using this same tool. A little aprospos I suppose. A little too clsoe to home sometimes. But then, it's who I am: the personal is political (or as Christina Baldwin writes: the personal is universal) and the universal/politcal, personal.

I still can't write the story of the 4 weeks in Van. I'm still melting. Perhaps once it's all out on the floor the obsessive compulsive in me can go and pick up the pieces and file them where they belong. Perhaps some pieces will make it back to my heart, sharp edges filed down so as not to continuously cut so deeply.

Thursday, September 24, 2009

Day 2 of DD (designer drugs)

Well it's day two of me injesting these little pills that will somehow, miraculously open up my pulmonary arteries in a few months from now. I don't want to tempt Mr. Murphy, but while knocking wood and repeating "keineihore" over and over again I think I've concluded that at the very least, I'm not allergic to them. No anaphylaxis or other crazy initial reactions.

As for the side effects, it will take time as these drugs work to unweave the way the oxygen's been circulating throughout my pulmonary arteries and other breathing patterns established over the last three decades. I do feel 'wheezy' for a few short hours after I take them but really, I'm quite used to that.

The way I run my daily life is sometimes more like a side effect than the actual side effects. This morning right before I got out of bed, I heard my Wife return home (from work). She started up the stairs and our short-bus cat decided to race her. I could hear little Misha skid around the corner of the stairs, bolt through the door (not the cat door but the door was opened by that point) and leap right into the bed at such high speeds. Cats are know for their lazy slowness, but this girl was so fast that when she jumped up she landed righ on my chest in one big pounce that felt like a punch to my diaghram. It freakin hurt. The Wife couldn't believe the speed and pressure at which this little kitty used. My cats, little darlings, can be worse than side-effects! So really, living with these abusive little creatures is preparing me for some breathless days ahead!

Tuesday, September 22, 2009

IT has entered my system

So I've started this new drug, for Pulmonary Arterial Hypertension (PAH). It's toxic, perhaps not like chemotherapy, but I still wish there existed some sort of support group. Actually I've wished that there was some sort of support group for general congenital heart defects. There aren't (in this small city). There are many cancer support groups, but not congenital heart support.

I'm trying not to think about the side effects, I'm trying to think about other things (I have much to do after this entry to take my mind off this new designer drug spinning about in my system). I hope I'm a lucky sort: that I don't experience the very bad end of the side-effects. I never did like throwing up even when sick. It's not something I want (then again, who would welcome it?)
I wish I knew others on this drug. I wish there existed non-medical information (phenomenological).

Actually, I just took a moment to look up non-pharmaceutical company sponsored monographs and it seems there's a side-effect that's more disturbing than vomiting: death. And that side effect wasn't in the -.05 percentile. It was much higher in teh 2006 FDA reports. I'm sure there's some way to explain it - otherwise my Cardio-man wouldn't have prescribed it for me. Then again, one can never know what and how a drug will react with some one's body. I dunno, 640 deaths is a lot in a group of no less than 3000. I never did well in stats, but that is a stat that's not well! I realize there are other variables (such as the fact that most people given this drug are on their way out anyway) but it just makes me itch.

The last time I took any sort of heart-related meds I was a child. By the time I hit 12 I hated what I was taking so being the stubborn-know-it-all that I am, I stopped taking them. I wanted to prove that I was pumped with pharmaceuticals from the time of infancy to 12 for nothing. I really truly believed it was just a waste or money and taxing my liver etc. And you know what, when my pediatric Cardio-man found out and ran a bunch of tests, they realized that those paediatric heart meds did squat. (No worries, I'm not so crazy as to go off these Designer-meds without some discussion and consultation). But that little experiment shaped how I viewed pharmaceuticals from that day forward: as a money-making scheme for big companies, promising big-dreams to sick people all over. I know that there are meds out there for which work and really do help rather than hinder people. I'm on others for other non-heart stuff but I still think these drug companies rob us silly with their outlandish costs. And besides, what did we do before pharmaceuticals? Plants, faith, courage, etc. That's pretty much how I've lived most of my life - and even for this complicated congenital defect, that was enough. It's no surprise that I'm in heart failure. No surprise. It sucks, but I really did receive so much more life-time than anyone ever thought- including those fancy MD types. Pharmaceuticals? No, avoid them if you can. You really can live without most. Just dedicate a bit more time to the maintenance of your overall health: mental, emotional, spiritual as well as physical.

Monday, September 21, 2009

trepidation

Tomorrow morning I start my designer drugs. These are the little pills that, at the start dosage cost about $3000 a month. They arrived today and are really, quite small for the price!
Over the weekend I did the math: I'm swallowing the equivalent of a pair of Bloodstones (boots I've always wanted) every two days. I will never have Bloodstones in this lifetime so these pills better be something else! I have a standing (blood) requisition coming my way too. After reading the monograph I'm going to be sure to follow through on the tests, no matter how much I hate needles. My NP and I both hope that these little pills actually do more good than negative. She says it'll take about 3 months before I notice anything (if I do). Lovely - meanwhile I just have to watch that my eyes don't go yellow from toxicity. These are the times when I'm grateful to be married to a medic. She knows what jaundice looks like. Now, I'm hoping that I don't suffer one of the side effects: vomiting. You'd think this was chemo (no disrespect to those who have done it, I believe there's no comparison - it's horrible). All the other side effects I pretty much live with anyway.

The anxious person in me just hopes that at best these things don't kill me! One of the other side effects screw with your heart beat. All I need is my already irregular heart rhythm disrupted. My Wife's 38 year old cousin just had a heart attack and now it seems everyone in her close circle is a heart patient. (We still haven't heard back from Step-son's autopsy). At least there's some hope for this new year. Hope keeps people alive.

Well, if it harms me I'll know within days or weeks at most. If it helps I'll have to wait some time before I actually start feeling it. I'm praying for patience.

Sunday, September 20, 2009

sorrow

If only realeasing stuff was as easy as throwing breadcrumbs into the river!

Wednesday, September 16, 2009

fear & excitement

I think fear and excitement should be part of the same continuum, just opposite ends of course. For a few months I've been fearful, or rather, apprehensive of the new Rx I've been waiting for clearance (funding for). I haven't really trusted how such a toxic drug could really create a difference in my living experience. For me the toxins didn't outweigh the "more energy". Maybe I'm hoping that in giving me more energy it will also somehow take away the strain on my heart thereby extending my life by a few months (years).
That aside, it just seemed like there were too many hoops to jump through to get to the point where I would be facing a new pill bottle.

Well, here's a positive report from the type of people that work at the local Heart Hospital. My N.P. who's been advocating for the funding is going ahead and sending the Rx as soon as she can. I still haven't been approved by Wife's work's insurance company: in fact, I've been denied and it's in appeals. Apparently I don't meet the requirements to warrant such expenditures nor do they feel I need it. Hah - if only they had a copy of my paper-weight medical files(s)! That and I don't understand if something has been prescribed by a Dr. doesn't that usually imply it's needed? So the patient support program to this drug (for which I've been in contact with weekly) has informed me that if it doesn't get approved on the appeal my next step is to apply to the provincial Pharmacare. That program would (ok, should) approve of it, but if it doesn't my NP knows for sure that the provincial Disability branch will cover it (that's who's covering my O2 at over $500 a month right now). (man, I'm one expensive chicky-pooh!)
So my NP is doing what she can on her end to just get the meds delivered to me.
From fear to excitement. This might actually happen!
I'm trying to check-in with myself to make sure I don't have any expectations for this medication. I also have my cardio team constantly reminding me that this isn't going to lengthen anything - so really it's hard to forget. I wish them wrong! Can I really persevere through this? If so, for how much longer?

The wait, a different sort of wait, is on.

Thursday, September 10, 2009

change

So the only constant in life really is change - I haven't abandonned this project - but I have been struggling with the meaning of life. If anyone out there knows why we're all here, by all means - can ya let me know?

The past few weeks have been hectic - ending summer, getting ready for a new semester (I will always live via the semestered calendar since I will always either be a student or a teacher!), and having new folks move into our house. As part of my ritual to rid myself of this past summer I decided that now was finally the time to cut my long mane right off. It had reached the needed length for donation (it already met the other requirement: virgin hair). So I had a special friend cut it all off just in time for Rosh Hashana - if only it is that easy to rid oneself of all the reasons why I cut it now. I cannot just fold up Step-son's death neatly away like the clothes in his box. I was reminded yet again just how much I still don't understand why children die by seeing a blonde child cry in the hallways at work today. I was so grateful it was the end of my class and I was on my way out because seeing this child made me feel so...incomprehensible. I'm slowly surrendering to the fact that he won't be moving here next year or ever, but I'm no where near accepting why he died.

Which is completely opposite my journery with my own mortality. I'm able to accept why I'm going: I've been going all my life (out there).

Tuesday, August 25, 2009

rough weekend brings on the bargainning stage

My rough weekends since June have mostly involved emotional upset, and usually over the loss of, well, THE loss.

My health has sorta stabilized since I got back - I'm back to receiving O2 everyday, sleeping in my own bed, having fresh good food (when I have an appetite that is) and resting when I can.

I've been in a little bit of a waiting game. I've been medically approved for that $2600/mth USD drug. We're just waiting for the feds to fund it. What that means is that I don't have to have a catheterization to prove that I have PAH - a test that's required for the application process. I told my cardio-nurse that they would have to figure out a way to allow my 24 year old cath tests as submissable or find another way. I was not, will not have another cath. I'm sure the techniques have improved since the 1980s but if I could avoid it at all costs, I would.

And so, they accepted my 24 year old tests: the first part of the process is in place.

This drug won't actually change anything - she hopes that it will give me more energy for a better quality of life. I told her I wanted to work full-time again (kinda have to) and she of course, shook her head (in the negative). Then the ominous warning came: this won't lengthen anything. Yes I know it won't. But yes, she wanted to make sure I wasn't raising expectations. The heart muscle is dieing, no drug will stop that.

So while I wait for this Mercedes of all drugs, I decided that I need a new career. Yes, with less than 3 years less to live I want to change direction! I don't want to teach anymore. It's not that I don't like it - I love summers off, I love sharing my passion, but I have no energy to stand for hours, talk non-stop for hours, and in some cases schlep other people's canvases. (For mine, I'd do it, for others, I'm tired of it). So I've decided that I will most likely start looking in, yes, the devil's playground: the government.

It's taken a while to come to terms with leaving one of my studio's. Now, I'm ready. I'm willing to leave it. I'm willing to work in an office. It can't be that physically demanding? I'm tired of being economically challenged.


This decision's been sneaking up behind me, but I became more comfortable with it when I had a little "episode" over the weekend. My BP bottomed-out and I passed out. While I was going down, the drama queen in me (that coudn't recognize the newer symptons/signs) wondered if this was it! (I've become pretty good at delineating all sorts of different feelings, signs, symptoms in my body. You have to when doctors want to know if it was a hopy-glycemic shock or a hypo-tensive one.) That last second before I went down I thought, if this is it, it's over in a milisecond. An entire lifetime of love, friendships, heartaches, dreams, gone in one millisecond. It seemed so anticlimactic. Of course I came to and tried to sleep. The Wife slept with one eye open all night just to make sure my heart was still pumping. Apparently I was completely white: no blood circulating.


This made me realize that as brain-numbing as the government is, at least they have benefits. If I can't stop this disease, I sure as hell can support it. I can (with money/benefits) do all that I can to support proper regulation of bloodpressure, accupuncture to support renal fucntion, etc. etc. etc.


Perhaps bargaining has settled in!

order

I haven't been to inclined to write lately - my head is still very much up my ass (so to speak) with all that's gone on. I can't make sense of any of it and would rather not spew some of my unconscious dribble over everyone. Aside from confusion, much of my (emotional) state remains that of anger. Confused anger to be precise.
It doesn't help that well meaning people expect us to be over Step-son's death. They're never literal, but if we're having a tough time of it, or don't respond in the positive (for example) to their questions they wonder "what's wrong". What's wrong; a healthy 17 year old was ripped from our lives. That's what's wrong. It's not like we both sit in the grief everyday, but there's not a day that goes by that he doesn't some how enter our thoughts. OK, more so in the Wife's thoughts than my own, but still - this house is a house of mourning. Granted we are starting to live again, eat, go out etc. Thanks to good friend (what would one do without good friends?) I even laughed, really soulfully laughed the other day. One can't just sit and stew in grief - but the pain of loss doesn't go away. In fact it will get worse for Wife before it gets better, mainly because he didn't live with us. That will drag it out as she waits for his phone calls in the middle of the night (she's on night shift). The fact that he didn't live with us is a saving grace though - she would have lost it completely.
Me, I'm holding it together - except the anger part (well, even that is kept fairly at bay considering). I have the annoyance of dealing with people's ignorance and negating my experience in this - and they are so sneaky about it. It was only about the third time that someone passed on their condolences over Wife's loss that I realized why I felt so jaded when people would say that. It's as if step-parents have no role/grief in all this. Sure, I didn't raise him since diapers, but when you date a single parent, you date the child. Now when people ask how the Wife is, I tell them that we're coping. This isn't about me I know, but it did happen to the both of us and it is the both of us that are getting through this. She doesn't live in a vacuum and if these well-meaning people like to see grief as compartmentalized then that's their issue.

In the meantime I keep searching for an answer. My faith has been rocked, yes, but not so much about believing that there's some sort of energy field out there, but about my long-held order I had about the universe. That is upside down. Naturally any parent (step-parent, grandparent, etc.) would feel that way when a child dies first, because we as humans believe that it's not the natural order of life/death, secondly because this can't be happening to her over and over again.. "A parent should never outlive their children" is a saying that's ingrained into or psyche - consciously or not. I keep calling "whatever is out there (insert G-d)" audacious.
And this concept of order is ingrained in ours. I keep waiting for some sort of reason why this 17 year old was taken from us. I can partially accept why I'm mostly likely dieing before my parents, but him - I just don't get. I vacillate between anger and denial. Some days I am so angry I can't bear to look at his photo, other days, I wonder if he'll do OK in school this year, completely forgetting that I held his dieing body for 3 weeks. That in itself was a surreal experience.

His mortality also painfully brings me closer to mine - both as a reminder of what I could potentially go through, and the emptiness that's looming in the Wife. I just don't know WHY she gets this kind of "karma". Which, I am starting to believe there is no such thing - nor is there any reason for anything. I used to be a strong believer that everything happens for a reason. Not so much now. Loosing her son but not me: maybe it'll make her a stronger person. Loosing me but not her son: maybe it'll make her stronger person (or whatever new agey belief that people like to imply). Loosing both- how strong does she have to be, and for what. Really, for what?
It just doesn't make sense.

Friday, August 14, 2009

grief isn't done in a month

This fast-paced life and instant-gratification of this modern world spills over to expectations and beliefs, not just in our 'doings'. When it comes to grief and loss, most people use the same lens of speed - expecting you to be over something, or done dealing with an upcoming loss.

It's been a month and a day. Appropriately so, Wife, although not Jewish, finally cut her hair. In shedding an entire layer of hair she shed another layer of grief. It's been a tough day for her (and me too) - some anger starting to bubble. Thank goodness we have a fence to finish (band out that anger in the nails holding the fence up). This whole 2 month drama-trauma loss of ours is peeling off in layers. First the drama-trauma of the badly behaved family is starting to come off. It's only when some of that starts falling to the way-side can the mourning really begin. The entire month in Vancouver (ok, 3 weeks for me), we were not safe to emote. We had our turtle shells on full. Their drama-trauma is not worth my time but everything from telling me to go home, to aggressive behaviour towards my Wife, to negating her as a mother happened. I'm still not over the verbal-violence I witnessed and was heaped on me and my loved ones (Wife and Step-son). We could not properly mourn when we were shielding ourselves from attacks left right and centre.

Now that some time has passed and we're in a safe zone/safe space we're starting to feel - and feelings bring grief. And yet, even though we are only just beginning, (some) people around us figure we should be over it (or at least out of the bad grief. We've been reading (mainly on loss of children) and what I've come to understand is that you never "get over" the loss of a child. It may get 'easier' but apparently it's still a matter of years before it gets to that "easier" stage.

Treya Wilber, in the memoir I read last month "Grace and Grit" also talked about how when she got sick and months later when she was still sick (she never got better), people expected her to be 'over it' (and talk about something else). People are there in the beginning, she says. and then when you can't answe "ok" to a "how are you" question a month or two following, people don't want to hear it anymore. People are like modern hospitals, good for quick fixes but not into the long-haul. Most people anyway.

I also know just how fortunate I am/we are to have wonderful people in our lives. When I say most people, I don't mean the ones in our lives. But I've also come to realize that if you're blessed with an amazing chosen family, you rarely also have a supportive blood family. That's the way it's been for us. We have amazing folk in our lives - our families, not so much. I think it take a 'community' to help/hold up a greiving person (just as it takes a village to raise a child).

Thursday, August 6, 2009

compassionate death ~ death with dignity part I

The moon is not quite full, in a few hours it will be (therefore, technically "tomorrow" it will be full). The air is so beautiful and soft tonight. It's definitely and August air. It saddens me - then again everything seems to conjure up sadness these days. That crisp August air means that summer is almost over so keep it precious. Within a blink, or in this case just a full moon away, it's September: back to school, bedding down the garden. Another season slips away.

In looking at tonight's full moon I recall where I was on the last full moon: in a hospital room, in prayer mode almost begging that Step-son's pain would stop - praying that he would be taken. It was a full moon over the west coast, visible in spite of the towering mountains. I wonder what it would have looked like over the ocean, dancing across Georgia Straight. However, the only nature I had that night was by the hospital grounds.

The moon has always been a natural marker in my life - it's brightness makes me stop and reflect just how much time has passed, and of late, how much time is left. I'm down to 8 less full moons left in my life since I've taken up writing, since I was given my life sentence.

Today also happened to require a visit to see my cardio nurse. Noting serious, only paper work (will it ever end) for funding for that $2500 (USD) drug they want to put me on that, doesn't "lengthen" my life span, but might give me more energy. At that price I'd be asking for a lot more than energy but I'll accept that. I'm just so stretched beyond my means from the past 6 weeks that I'll sign anything. And I did. I told her my reservations about this drug that's supposed to help but seems to incur more "side-effects" and liver toxicity (I'll require blood tests every few weeks: that's how toxic the stuff is). At this point I could say no, or I could just 'blindly' trust them. Since my energy is all but gone, I'll choose to trust them, this time.

I still hold fast though: know your body and make informed decisions. And for the love of everyone around you write your living (biological) will!! and then, let those you love know that you have one and what your desires are. Please don't leave those you love in the dark. Think of the living will as a full moon: it casts a bit of light on what you would want done if you happen to be in a situation where life support is required, or whatever other very difficult decision-making situations (including organ donation etc.). I get that we humans don't want to think bad things, or prepare for them, incur the Eine Horah, but really, leaving some of those hard and possibly controversial decisions to loved ones while they are in a state of shock, grief, denial, (etc. etc.) is unfair and taxing and could erupt into some dangerous confrontation.

After having watched silently for 6 weeks, I'm writing, writing, writing. I've been so shocked, appalled and disgusted by some behaviours I've had to witness that even the mundane "don't write on my body even if you think I really wanted such-and-such tattoo" is going in my living will (that's if I even make it to palliative care. With my DNR chances are I will die where-ever I pass out). Yes it seems inconceivable that humans could behave like animals, but apparently, grief excuses decorum and people need to be told what they can and can't do to you, or while in the room when you're dieing.

When I get the courage, I will also start writing and joining the compassionate death movement. I don't call it assisted suicide because this isn't suicide when you're already dieing, this is death with dignity. We live in the industrialized world, there is no way someone should have to starve to death. By the end of his life, Stepson went from a very healthy athletic boy to an emaciated third-world looking rack of bones. His body pretty much ate itself, and the Wife and I watched the results in the cath-bag. We were the only 2 that knew what we were looking at. I mean no disrespect in saying this, but his container resembled the shape of some of the figures in Holocaust photos. And this is Canada 2009, in an industrialized, first world, access to health-care country! And yet, the doctors could do nothing. All they could do was relieve his pain, which wasn't much Some terrible nights, Step-son's posturing, seizing and even face showed that they failed. They could only give him so much per does and when those wore off, you knew it and could here it down the hall. I find it appalling, in a country where I can choose and have the right to be married to a woman, I have no choice in dieing with dignity and compassion. In the end, if I crawled into the forest I would die a much more pleasant death than in our first world hospital with all it's "technology". I got so tired of hearing the "religious" folk of the "family" (not mine!) and even doctors spout shit about it not being his time and how (the Creator) will get him when it's time ... well all I have to say to that is that they're right, G-d came to take him on June 15th, it was man that got in the way. It was man that shocked him back not once but several times even though he had been without O2 for so long; it was man that connected him to man's machines and it was man that started feeding him only for Stepson to choose to cough it up the day after I got there. I am religious and spiritual but sometimes people just get in the way of the greater order of things.
(I don't however think all technology is bad; machines can work wonders. People are shocked back to life and given a second chance all the time. Sometimes we got too far, just for the sake of the grieving loved ones.)

I recognize that I've taken some of those choices away from my loved ones. I've also recognized that, like Stepson, the last thing I see might just be a floor in some impersonal place. I'm not yet OK with that but I am very much at ease now that my DNR was the right thing to do (as someone who is already ill- this is not something healthy people should even consider). I do not want my Wife to be holding vigil at my bedside until I go. And, if the laws change, it might not be for weeks on end. (There's hope: one state and one province are looking into things).

For now though, ... for now though what? Life has changed so completely and totally. I can't get over how unfair it is to my Wife. I can't understand how all this trauma has to happen to one person. "Why do bad things happen to good people" - I know that's coming from a place of victimization but for goodness sake I just can't wrap my head around this one. (Anyway, victimization only gets dangerous if one doesn't move from victim to survivor to thriver on the recovery-from-trauma-continuum. Some days I'm grateful to be a trauma teacher).

I realized that as much as I've been asking for a reason, if I get it, it probably still won't be good enough. I can 'accept' (with work) reasons for my short-lived life, I can accept that my Wife was greatly impacted by the death of her sister when they were but mere children, but I don't think there will be any good enough reason that justifies her going through three very close deaths (and that's excluding her parents). G-d's gonna have to come up with something really good for me to be satisfied! Why does she have to lose her son and her wife within 5 years of each other?

Sunday, August 2, 2009

around the bonfire

So the Wife and I decided to go out of town (yet again) but for the day yesterday. We went to meet up with friends at a festival out in the country. In my younger, healthier years I camped the entire week/weekend. Now it just takes too much out of me - and I'm too much of a princess (I love to use that excuse).

While there I happened to see a teenage kid that looked an awful lot like Thomas. As I passed him all I could hope was that the Wife hadn't seen him - and she didn't, until late in the day when we were sitting around the bonfire (with about 100 other folks) and right across from us the Wife pointed out the boy. I asked her if she needed to leave (as we were due to head out within the 3 hours span anyway). Instead she got up, walked right across the bonfire circle to talk to his mother (the kid had disappeared as teenagers do within minutes of spotting him) and I could see her pull out Thomas' obit and colour photo of when he was 14. What she told me later was that she complimented the mother on having a beautiful boy. It was not long after that that we left.


There is no "good side" to death - I've always been a pessimist even though I work hard at trying to see the good in things - but now I really don't believe in Karma, or things working out for hte best - perhaps it's because I'm also still dumb-founded, but I'll allow it. It's my process. But anyway, the goodside I have been gifted to witness is that I really see a different kind of strength perculating to the surface that although I knew the Wife had, would only witness on very rare occaisions - and now I watch her display it publicly: something she rarely ever did.

Thursday, July 30, 2009

big stupid questions.

Given that this is the end of July and I haven't written anything besides a death anouncement, I thought I would try to put my overwhleming amount of thoughts surrounding the topic of death to words. It may not work as too much has occured in our little family in the past month to put words to it all. And, of course, even though it doesn't have to do directly with my blog: that being living with "terminal illness", the month's activities mostly involve death.

I'm struggling with the meaning of life at this time. This sudden death completely and totally screwed with any meaning that I was becoming comfortable with. Of course, any sudden death of a close loved-one will do that. I have never really had anyone very close to me die. Well, I have but I lost all of my granparents, and yes I was close to 2 of them, but at that age, you kind of expect it. Death of a close grandparent, although hard, makes a bit of sense. The older ones go, after having lived a full (or full enough) life. But to loose someone so young makes absolutely no sense to me. None whatsoever.

This is what's screwing with my sense of order of the universe. It's also making me both feel more blessed that I know about my time limit, and simultaneously very angry that my Wife was given such terrible fate. It's not even the "short end of the stick" she's gettinsg. With her sister having died on her 14th birthday (so her own brithday is now a Yartzeit), her son now stolen and then me, it's a stick covered in mold, maggots and shit, that she's been given. And yet, at this moment anyway (I think she's still a bit numb from all the drama-trauma) she doesn't think so. Somehow she hasn't lost her faith - in fact I think it's getting a bit stronger: not a religious kind of faith, but whatever it is that she believes in is quietly brewing. I hope it is that that's carrying her through this because me, I am angry, angry at the audacity of G-d (or whomever) to have ripped Thomas from her, and angry that what I thought I believed in is not what I thought (or is it). What if I was wrong about my theories of life? What if I have no clue what I'm doing here right now? His death is making NO sense. I keep hoping that there will be something that comes of the autopsy - something to hold on to that at least gives meaning to "why" he was stolen. I keep hoping that maybe he himself will tell us what G-d had intended. Without getting all paranormal I will say this: I believe that spirit as a highest manifestation of soul, has the ability to communicate without the ego/personality's physical language. For example, when Thomas was still alive in that hospital bed, although he couldn't communicate on the physical level (he was brain dead) because there was no personality/ego state left, I believe that his appearances in countless family members' dreams (and my own too) was the spirit-self level trying to communicate with the ego/physical beings. Having said that, I think it will be awhile before his spirit-self learns why he was taken. About 48-55 hours before he finally left this earth completely (his physical self was the last to go) he came to me (in what my ego-self calls a dream) all confused not understanding what was going on. I was shocked that I had to tell him that 'he' was dying. (Seems like the personality/ego self-> the being that's grounded in earthly affairs, doesn't always communicate with the higher self). (The cutie also appeared in an other's dream (a nurse-friend of the family that worked there) thanking them for the morphine and other 'good drugs'). G-d he was on a lot of them, and without them he would have been in such deep intense pain (irregardless of what we believe a body knows/feels when they are in Persistent Vegetative State: PVS). When they wore off before he was aloud his next round he would seize up so often and so badly that his face actually resembled a person in pain.

Anyway, having said that, I also admit that I don't believe in angels or ghosts (mind you I do spirits, so figure that one out). I so want to know why he was stolen - and it's just that: he was "stolen" from us. I hope I find out before I have to see him "on the other side". That was a hard day when I realized I would see him much sooner than many of the folks in the room (including his birth-mom, kinahora). There were a lot of hard days and I'm sure still to come. Life won't be the same. I can't go into our basement room, the room we left up for him when (some say if, I say when) he chose to come to college in Ottawa. He knew there was space for him. At least he knew he was still wanted, loved.

I have no meanings right now except this: if you're the stoic type that can't say "I love you" to those you love, get over it, because there will come a time when you can't say it anymore. Death is a "when" not an "if".

Saturday, July 18, 2009

back home

I still can't stop shaking my head. In dealing with my own impending death, we were not, I repeat, NOT supposed to have to have another death so close to us (and so young).

We've been back home all of 2 days (not even) and after the flurry and joy of being back on safe ground (there was nothing safe about the turmoil in Vancouver- and it's all too fresh to write about right now) reality is starting to settle in. Yesterday we spent some time in the garden, looked at all that's grown in the month we've been away: so much growth admist all this dying - long, prolonged, painful death.

Now it's quiet, we are tired, still not over the jet lag - as far as we're concerned it could be noon and we need a nap. I started unpacking the luggage of his things and the only thing I could think of was this: why did G-d make him, just to take him away at 17? I mean no disrespect or insincerity, but I suppose now that the actual observation of slow starvation and dehydration to death is over, now that the death has occured, now that we are out of that toxic dynamic called "his relatives", the questions come pouring in. Appropriately so it is raining, a heavy West Coast kind of rain - it's the kind of rain that is usually cleansing for the soul - a rain that could wash away troubles, clear the mind. This rain only reminds us of the copious drops (of tears) that are still to come. I know the next few days, weeks, months will see hundreds of questions go unanswered.

I feel a little stupid wanting to continue to write about my own process in dealing with my shortened life. But I also feel very blessed to know, in my gut that I'm on borrowed time. As we all are, but most people forget that, want to mask their mortality, even negate it. Sometime between now and then I will come to terms with my wife's loss, and my own - and sometime between now and then I will be able to write again, about death, without it being every breath I take, because that is all I breathed for three long weeks.

Thursday, June 25, 2009

an unthinkable loss

Dear friends/family,
I'm very sorry to use this impersonal venue as a source of awful information. At this time neither of us have the energy nor the time to contact everyone who's sent prayers/thoughts/energy/love etc.

Last Monday night (June 15th) Thomas had a seizure that caused his heart to stop. At this time they are unable to medically explain what happened. Medics revived him and has spent the past week on life support. There is almost no neurological function. We are in Vancouver saying goodbye. Life support will be stopped as soon as everyone that needs to, says goodbye.I'm not quite sure how MediKaT's been coping with this for an entire week. I arrived this afternoon and saw him and immediately broke. He is not in pain (?) but his spirit is no longer *in* his body (he's still lingering in the room). Soon he will be free, she will be (is) completely shattered.

We are so very grateful for the love and support and we will be having some sort of Shiva/Wake/gathering (in Ottawa) for those who would like to pay their respects etc. upon our return. At this point we ask that you not contact either of us as. We love and appreciate all of you but are unable to cope with anything more than his last few days with us.
with all our love and greatest appreciation,Thank youthe KATs

Wednesday, June 24, 2009

Death

It is guaranteed to every single person on this planet, in fact, to every living thing.
I never thought, ever that in dealing with my own impending death in the foreseeable future that we would have to deal with an immediate death of someone so young, healthy and unexpected.
I'm taking my precious health, flying to the other end of the country to hold my Wife up while we say goodbye to her child.

The only advice I have is this: write your living will. Know what you want so people don't have to fight about ending life support or not. Write it because it WILL happen. Maybe not now, maybe not for 40 more years, but it WILL happen. For the love of your loved ones, make your end of life wishes as clear as you can, and then tell those around you.

Never, in a million years did I think our discussions about my biological will would apply to our child.
Never.

Saturday, June 20, 2009

I'm feeling more confident with my DNR these days. Before the paper used to scare the shit out of me, knowing how final it is. I was so afraid to carry it around with me for fear that I would collapse and that would be the end of me. I wouldn't have time to say goodbye. I would fall, heart stop and gone.


Sorta like my step-son. He didn't have a heart attack, his heart just stopped (they are medically completely different scenarios). I'm not at all suggesting that there wouldn't be all this turmoil if he had a DNR or even some sort of Living/Biological - most young have absolutely no need for one. In fact, unless you've got some sort of terminal illness there is no need for a DNR. There is however, always need for a living will if you're an adult (over the age of 18). I get that people don't want to talk about and write these things because "it's morbid" but what's more morbid than sitting at a bed-side knowing if someone wants to live off machines?

I'm not at all drawing a parallel here to my step-son. In his case, we don't even know the neurological assessments. For all we know his brain could be intact, the CPR saved him and all he's doing right now is resting, deeply. But, if for a moment those test come out negative, then, the difficult questions come up. In this case there are 3 legal caregivers, three opinions! For the love of your spouse, partner, friend, family etc. stop and think about what you want for your living body and then write it out - by hand. (My cardio social worker said that if you can't afford a lawyer, that the less chances of instructions not being contested if it was written long-hand. Legal reasoning: it's easy to get anyone to sign something type-written, or copy a letter onto a signed sheetc, etc. Chances are someone can't be coerced into writing all their desires out long-hand).


In my case, had it been me, and the medics came and shocked my heart back the reality of me not having brain-damage and having a heart that would return to it's normal state (which is, ineffect, broken) are extremely slim. So slim that my medical team explained the options and for me a DNR at this stage of chronic terminal illness made sense. Doesn't mean I like it - it still scares me. G-d forbid it stops just like Thomas' did. That would be the end of me at that moment. No time for goodbyes.


Yet, I would not want my Wife to go through in the future with me what she's going through now. Albeit they are completely different situations. He's 17 and healthy, my the heart muscle is so enlarged... anyway. She doesn't need to go through this a third time in her life. Having some sort of guiding papers/directive won't make the situation any less emotionally staining or her soul, but it will guied her through, make some decisions less complicated when she'll be overwrought with grief.


Again.


Now that the adrenaline part of the (Thomas') urgency (rushing to make sure Wife caught the next available flight, the initial 24 hours, the defrost of the patient, etc.) is over, time settles in a black bear readying for hibernation. We're moving into the WAITING stage. Not the waiting-for-a-goal stage but the wait and see game. Waiting for him to wake up. Waiting about brain activity. Those results may simplify things. If there isn't any, discussions of end-of-life become an alternative. If there is some, we continue to hope and pray until he wakes up.

In the meantime, the Wife is starting from the beginning, hunkering down for a long wait: the beginning of Harry Potter. Her game plan is to read that to him, from the beginning. My game plan? I seriously need distractions and company as I wait here, alone, for the call that informs me if I fly out there or not.