Thursday, February 26, 2009
We get back to her office, a dungeon without a window and full of monographs, patient files all over the place. So this is where this woman spends most of her life. Numerous times she's called me after hours, and like today, she's there well past 5pm. Makes me wonder what kind of life she has outside if she's always at work. I admire her dedication and know that I am lucky she is a workaholic.
I take all the literature she has for me, glancing at her bookshelf and commenting how I have some of her books. She smiles back saying "smart girl". I take it as a compliment knowing how important it is to know your body, know your health. Too many people leave it to the "professionals" and do not participate in their own health care resulting in poor or uninformed decision-making. I'm not suggesting all my decisions are correct, but at least I make fully informed and aware ones.
Take this new drug that she wants me to consider, I'm very hesitant. It's not that I don't trust her. She doesn't even know if it will benefit me, but at this stage for the game, she says I have nothing to lose? True, but that's not always the best reason to make decisions about what you're going to introduce to your body. At least she also adds that it can be stopped at any time and that it won't kill me if I suddenly stop! Good to know, eh! I just wonder what the outliers are and can't wait to get to the data. I always go by the outliers because without fail, my body and it's reactions always always end up being the extremes responses (outliers).
Of course, knowing me, I've already ready 2 pages before I even leave the Institute. When I get downstairs I sit under the tree of life (painted on the East wall) and rip open the patient info-box. I start reading. I start crying. This happens often when I read anything to do with my condition. Reading it makes it real and I would rather it not be. I also learn a lot more about what I have when I read studies they point to me. My team doesn't tell me much. Over the years I think their way of telling me things has been in pointing me to the reading I've been doing. That's why I get emotional - it's through the printed words that they're telling me. That's how I found out I had Eisenmenger's syndrome ( another subsidiary syndrome from the big one). I read my chart. Then again, I always read my chart, everywhere and whenever I get a chance.
I remember when I was 16 years old at a cardiologist appointment. I insisted to my mother that I was old enough to go alone. Up until that point my mother had always come with which meant that I wasn't told what was going on. I think they thought I was too young to understand what was going on. I think it's very important that children know what's going on with their health. Even if they don't understand the technical medical terms (hey I still don't with most big words), they need to know that they're being respected enough to be privy to what's going on in their body. I don't blame my parents for keeping it from me even though I was angry about being kept in the dark while I was a child. I understand why they did it - it was a lot and it was scary. However, it was more scary not knowing what was going on.
I had no idea how to answer kids when I sat on the gym stage. I could not participate in gym class when I was in school. I was always made to sit out on the stage while the kids played. For the first few years I sat alone. When kids asked why, I had no answer - I didn't know. I wasn't privy to my own health and didn't even have a simple name. Around grade 4 or so another kid sat with me. That kid had asthma (and they knew what they had). When other kids asked why she sat out, she answered that she had asthma. So, because of her, I had a name to some sort of illness that resulted in sitting on the stage! From that moment forward, when kids asked me, I had an answer. It wasn't the right one, but it was one.
(I wonder if kids who can't do gym are still made to sit on the stage and watch their classmates have fun. I wonder if they get to go to the library or something. What I wouldn't have given to go to the library.)
Kids need to know! How much is too much - I don't know, but they need to know.
Anyway, the year I told my mom I was old enough to see the dr. alone, I took the opportunity to grab my file and read it while he was out talking to my mother. That's not the best way for a kid to find out what's going on. It's also not the best way for a kid to find out the results of their double-lung biopsy that they had when they were 12/13. Trust me, kids may not understand big words, but they have ways. We didn't have Google back then, but we still had books, dictionaries and of course that wonderful anatomy colouring book. If that failed, I also knew how to use the card-catalogue (I miss the old card-catalogue and the smell of the old library where Emerald Plaza is now standing.
I digress again.
Anyway, this new medication: I'm not convinced. I'm especially not very keen on the fact that in order to get placed on this med and funded, I have to undergo a catheterization. After my very last one at age 12, I promised myself I would never ever ever make myself go through it again once I had autonomy over my own health care decision-making. (I've had one when I was very little and woke up in the middle of if, another at school age, then one at 9 then the last one at 12). That's one of the very last trauma's I have not overcome. I'm not sure if I will ever be over that, nor want to be.
I realize that these days catheterizations have probably improved since the 1970s and 80s and that they are now day procedures. When I was younger I was in hospital for 5 days recovering. I think I was also anesthetized. I fought a lot as a child. I hated having these things done to me. I still do.
Tuesday, February 24, 2009
I am having a hard time shaking it, creating peace and living in serenity. I know that acceptance is a long way's off. I know that sometimes I will experience moments of acceptance and serenity in what's going on with my health. I know too that in the end, I will hopefully be in a state of peace with the knowledge that I'm being cared for by some greater force.
But for now, I'm so not there.
The myriad of details of daily living on this planet can make anyone insane. The details of preparing for the end is currently what's making me very upset. For some unknown reason, I started looking for/at burial options, mainly plot selection. I received some information/advice that suggested that I should buy before-hand and not leave it until the last moment. Well after getting off of the phone and Internet searches I now have a better idea of why one shouldn't wait until the end. The cost for a piece of ground is astronomical. Don't even get me started on the choices: Jewish cemetery, or non-denominational cemetery with Jewish burial (non of that cement around the coffin)? Single plot or double? Do my parents have a family spot? Do I want a monument or a simple marker? Green burial (Jewish burials are pretty green) or cremation? (I know, as a Jew cremation is a big no no, but the cost of land is out of my reach). I am so confused. I don't want to be in a cemetery all alone but my wife is not Jewish. Maybe she will move back to BC when this is all said and done. Why should I tie her remains to here. And being alone? I tell myself how irrational it is considering I won't even be alive. My soul will have left my body already. I won't be alone, I'll have the worms and dirt.
But the cost. It's the cost I keep coming back to because it's something that needs to be done. It's not like I can be buried out back (although I don't know why since this is my property and all).
Alright, so I don't have to think of it right away. I now have some prices and ideas as a starting point. I can file away that information and start saving.
Easier said than done.
I went to my family's for dinner tonight. It's one of my (fave) sibling's birthday. I enjoyed hearing about their plans for their wedding anniversary this weekend. I didn't even mind hearing about the Aries' plans for her birthday. But then, out came that anger, well not out, but keeping me warm under all my layers. My ears had tunnel-sound: all I could hear was their thousand dollar trips to Vegas and Santa Barbara respectively and all I could think of was the 3-4 grand I don't have for some 6 foot piece of land. I'm not jealous that they have a lifestyle where they can just take off for a weekend. I don't really care. I'm happy they can do this - they've worked hard for it.
I am angry at the bigger picture, at poverty, at society's need to capitalize on death of all things.
I am pissed that something like burial or at least disposition of a body costs so freakin much. Everyone dies but not every can afford to. I just don't understand a society that charges for something as essential as disposing of a body.
Monday, February 23, 2009
Friday, February 20, 2009
It clouds my gratitude and appreciation of life's blessings and life itself.
The past week I've been moving stuff around in the basement (searching for old canvas, stretchers bars etc. and all I have managed to feel was great anger and sadness over how much stuff I have. Amongst the bright cobalt blue suitcases, tightly wrapped camping gear and the bright turquoise swimming ring from Mexico I felt like I was purging and packing for another move/trip that I'm not going to return from. I know I shouldn't be preoccupied about what will happen "after". I know that all this thinking is about my need to control things and outcomes however I can't seem to shake it this week. I am planted firmly on the ground so I won't blow over and the anger is raging against my thin fragile body anyway. I have a never-ending list of things to to so that the Wife won't have to do it all. I have unread books that I've given up on reading because I feel like there is no point to reading them. So I learn more about how creativity heals? So I learn more Hebrew? So I learn more about ancient art? This won't mean anything when I leave this planet. If someone else were making these comments, I would take it as suicidal ideations. I assure you it's not. I want to live, live long and live with joy and love. I can experience joy and love, but not longevity.
Which brings me to another observation I had this week. I was pressing the walk-signal button on my way to work when a young girl probably no more than 10 or 12 came up behind me on her scooter (those skateboard things with handles) and started pressing into it. I heard her call the walk-light button all sorts of expletives. It was a beautifully sunny day and I was feeling moments of joy (the anger does not like sunshine you see). I thought to myself, if you're only that age and already stressing over such a silly thing as a long traffic light, what kind of crotchety angry lady are you going to be. Life's too short.
I think everyone should have a countdown clock of some sorts just to remind them that this moment (or whatever moment you're experiencing) will never happen again. Ever.
When I was in France there were many exhibitions and landmarks that I couldn't get to. I didn't have the time. Well I did, but traveling is hard on my body (at any age or stage) and in France everyone smokes and barely anything is "accessible". (The hostel I stayed in was a 4 story walk-up, centuries old steep and long stair cases. When I called to book and make sure that it had un ascenseur they confirmed in the positive. I learned later on that rare a technological thing like an elevator works in France. And that it usually takes weeks to fix things there.) Had I chosen to forgo rest and sleep I would have been able to see more, do more. Back then I believed I had plenty of time left. I was in my early 30s and anything seemed possible. I had entered new ground as far as my cardiac team was concerned. I was sleeping less than a kilometer from the Louvre, the Mona Lisa, of course anything was possible. Returning to see it again was possible.
Now as time passes even faster than usual, I can almost envision the sands slip away through the hourglass of time. It's not a painting I want to create. It's almost the end of February. Time passes too quickly, especially when the count is on. Even when I try to forget, let denial do it's job, I get jolted back into reality. My cardiac NP calls me more than my own mother, this time to talk over a new drug that costs more than what I make a month - much more. This drug is supposed to help regulate Pulmonary Hypertension, you know, the shortness of breath, headaches (not enough O2 to the the brain), and weasing. Sounds good? Get this the side effects include shortness of breath, headaches, weasing, gasping, liver damage (these meds require bi-weekly blood tests), kidney failure, edema, .... yes, everything that I already have then some! Can we say guinea pig!? Yes, I'm still going to meet with her, eventually.
I want to be able to enjoy the time I have left, not confined to a bed 24/7. I may love and identify with Frida's (Kahlo) work, but I am not her! Not yet!
for now though, I've been enjoying people more, the milder weather and of course food. I don't know where I'll go in the next lifetime but the food better be good and plentiful! I can't promise to write home about it though.
Wednesday, February 18, 2009
Tuesday, February 10, 2009
That's so finite.
In the spiritual readings I've done over the past decade or so, I've come across concepts of gratitude and of savouring moments. These readings teach you to savour a moment as if it's the last time you'll do this or see that. I'm not new to the concept of savouring a moment. I am new to the reality of the finite. It's hard to carry on longer-term projects or new ideas when one knows with absolute certainty that one will not be here. There is no replacing the cracked lap-top. There is no purchasing more "things". Why?
I know that life is not guaranteed to anyone. Accidents happen. Illness happens. However most people can count on going through most phases of life: childhood, adolescence, young adulthood, career development and/or family development and adult maturity (you know, the 50s being the new 40!). Anything beyond that can be a little sketchy even in the industrial world with life expectancy reaching well into the 70s. People walk around this planet expecting to go through most of these phases. That's what RRSP's are for, retirement years, grandparent-hood etc. Most people don't have (nor choose) to think about death, burial rights and rituals and endings if they don't want to. Most people can put it off for a long, long time. Imagine being able to assume that you have another 40 years to live. That is a reflection of the term "middle-age". Imagine being able to say with confidence that you are middle-age. Most people say it but forget what that means. It implies that you assume (and even accept) that you're halfway through your life. It assumes that you have xx amount of years left. I say imagine because I acknowledge the reality of uncertainty.
But I also say imagine because most people do this. They imagine their lives during retirement. They save and plan for "the future".
What do you do when you know for certain you will not turn 40? (There is no 2nd opinion, no transplant, no going beyond life expectancy. I've already gone beyond, twice, thrice, 10 times beyond). What do you do when you know that you will see less than 4 dozen full moons left. Forty eight moons - that's not a lot. Well, it's a lot considering that at my last doctor's appointment a few days ago, my Dr. was already measuring for one of the last sign and symptom of the end. Already! My goodness, it was only a month ago that I was told that I had reached the heart failure stage. Only a month ago and already another end sign. Already another end marker. But I am not ready. I still have lots of paintings to create. I want this to slow down. I want to see at least 12 more full moons.
Imagine just 12 more moons, or one more moon. Imagine...
There really isn't any comfort in knowing with certainty that I won't witness many more moons.
There really isn't any more gratitude in witnessing the beauty of the orange ball at this juncture.
There really isn't any more savouring or slowing down to gawk - there really isn't.
I'm not yet evolved or able to accept the finite. Not yet.
Saturday, February 7, 2009
Of course, I have my tired and pain-filled moments. At Kabbalat Shabbat tonight I couldn't sing. I wanted to, but I couldn't. I never realized before how much energy the body expends simultaneously singing, snapping fingers and smiling. That's a lot of energy. Keeping up with a melody in Hebrew is a lot of energy folks. To add, it was also the end of a workday/work-week. This meant that I didn't have much extra energy to begin with so it was no wonder that I crawled out of the end of services (never mind the fact that I had to sit during the Amidah).
Aside from those moments, I feel like any other normal living person. Until I realize that "palliative" and signing DNR forms become part of my vernacular. I mean, who goes around using language like that pertaining to themselves? It gets tiring, especially when I think to myself, "ya, but I'm not going anywhere yet!"
I had some good friends over for Shabbat dinner tonight, and towards the end of the dinner, besides dessert, out came my photo album of my university and pre-university years. After the laughs of the big glasses and clunky shoes, once they left, I took the albums for a closer look. I went through them again this time reminding myself what every one's been up to now (and thanks to Facebook I know). As I flipped the pages thinking about J that just gave birth to her second child, or M's child is now about 5, or S&A just got married, I couldn't help reflecting how everyone is is the prime of their lives. They are either established in their careers or are starting families and have much to look forward to. There's so much ahead of them. So much fun, laughter and love. Then I look at pictures of myself knowing that any thoughts of career are waffing out the window. As everyone greets new life into their families, I'm wrapping up mine.
I'm not ready for this reality.
Wednesday, February 4, 2009
The bargaining stage has come up quite a bit lately. Other people's bargaining. I am tired from other well-meaning people asking me if I haven't considered a second opinion or if I can't put myself on the transplant list. At first I didn't want to be privy to other peoples' bargaining stage. It is tiring repeating the same old same old. I have come to realize that one can't negate that stage or need in someone that cares. One can however ask that it be kept to a minimum, or to get answers elsewhere if the source has no energy to answer.
This roller coaster is not of my doing, and it can be very frustrating for others who want answers, share their concerns etc. We all work with very different time lines. Sometimes I have the energy to deal with other people's bargaining stage, sometimes I don't. Just because answers don't come immediately doesn't mean I don't care.
For those that are not familiar with Kubler-Ross' work, her stages include:
denial, anger, bargaining, depression, acceptance.
None of these happen in any particular order. Some are repeated as needed.
After one of my low-energy days (where I cannot be too far from my O2 machine) I walked around the house noticing that my plants needed re-potting. They've needed more soil and new pots for some time now. I just haven't had the time or desire to get my hands dirty and do the dirty work. That day I wondered what the point was. Houseplants don't have a use other than the Aloe for medical usage. I was looking at these things like an alien - wondering why we humans have this need to collect all sorts of "things". Emotions started bubbling inside of me. It wasn't depression, it was anger. I was angry that all of this 'stuff' seemed so futile, so pointless. What is the purpose of all this collecting, of filling a house, of needing "things" if this will be rendered useless in a matter of time. Another feeling washed over me: a sense of urgency to clean appeared. I felt I needed to clean up after myself, do something with my unfinished projects, clean up the mess a human makes during their visit on this planet. Again I found guilt lurking behind anger. I didn't want my wife to have to do all this when I'm gone. I didn't want her to have to go through half finished quilts, well-meaning projects or good intentions-beginnings. She'll have enough on her plate.
As I reviewed Kubler-Ross I noticed that another emotion I've been washed over with is missing: guilt. It should have it's own stage. I've written so much about it thus far but don't see it in much literature. Not many people have the luxury of knowing that they are parting. Scratch that, we all know. We all know that in a couple, one will go fist. Most of us choose not to prepare, not to write wills, not to write living wills and not to have their affairs in order. I may be feeling harsh guilt but I also know that my wife and those around me will not be left guessing and stumbling about what I want. For that I have relief.
Get your thoughts, ideas, rituals and instructions in order. Do it not for yourself but for the ones you love. Why would you impose guess-work on them? At 30 I knew I had another decade more or less. Time moves on whether or not you can keep up and most of that time now makes up yesterday. It is behind me, with very little ahead. Maybe if I say it enough I'll actually believe it one day.
I am able to climb my stairs, go to work and laugh. I love mild days. I love my workplace that allows me to raise my legs while working at the computer. Such a small gesture helps the edema - which enables me to last longer than 6 hours. I am not as light-headed, I can feel my hands and limbs. I love the small favours.
Favours: I am learning to ask for things I need like the permission/ability to work from home when it is too damn cold for my health, information on death rituals and the relief knowing that my wife will not be alone - that she has community to lean on when she gets tired of care-taking, or when she needs a laugh.
I am only just learning to ask. The act of accepting will take some time. I am still stubborn, a virtue that has taken me this far. Patience is requested as I adjust.
Sunday, February 1, 2009
And then I realize my newest emotion: I am angry!
I, am terrified. I am not ready. I am young.
I am in the middle of stuff. I have projects yet to finish. I have a busy mind - but a very, very tired heart.
Some days I feel normal - like I'm able to finish projects, go to work, teach, enjoy people's company and life itself, and then there are days I can't get out of bed - and it's not even depression's fault, it's my body.
It's not my body that's betraying me, it's my mind.
Anyway, with regards to this job, I'm getting rid of it for several reasons that include the fact that I am just not able to work 6-7 days a week (days & evenings) anymore, my health care providers want me to take it easy (for real, not my stubborn version of easy) and my family.
Which brings me to the other very tiring events of the past 28 hours. My wife and I had "the talk" with my blood family. It was long, it was difficult, it was honest and it was different. It wasn't a fight (like we are all known for) but it was not pleasant. I actually shed a few tears (then hid them in my wife's shoulder). I don't do that in front of my family. It's very hard telling people that things are declining and are not going to get better when you look (and feel) OK. That was the first hour and a half. By the time hour 3 rolled around I was completely exhausted. I could barely talk anymore and needed to go home to be hooked to my machine to breath. There were other items to discuss which meant that I was not going to breath for another little while still. By the time I got home I felt like someone on death's door. I could barely crawl up the stairs. I could barely feel my own hands and feet again - a symptom which was supposed to be relieved by the phlebotomy I had 10 days ago. It's scary not feeling your own limbs, especially when the numbness appears suddenly up your arms and legs leaving you feel like a tree stump. Nothing to move or feel except your own trunk. Then, you become helpless. At 35 I become a child again, needing help removing a sweater because I couldn't feel where the arms are. Those are the bad days.
Once in bed, I could not sleep. I was so unbelievably drained from the day. I felt like my heart would, could, just slip quietly into a small, short rhythm allowing my soul to escape from my container and I would have no energy to grab for it back. For the first time since childhood I was afraid to go to sleep for fear of not waking up. I cried in my wife's arms. The last thing I wanted to do to her was leave while we slept. I have so much fear and guilt of her waking up to a corpse.
How does one get used to a roller coaster like this - teetering on both worlds but fighting so hard to stay in this one. How does one get used to a roller coaster that allows the body the ability to work and be productive one day (or week) and the next introduces such weakness that gripping a knife to cut a meal is a challenge? How does one get used to saying everything they need to say to the ones they love without becoming a recording. How does one get used to tentatively moving forward with one eye looking over soul's shoulder thwarting off (the unknown).