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


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.

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.


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.

Thursday, June 18, 2009

"time goes by so slowly...

for those who wait, there's not time to hesitate"

to quote Madonna's track one to her CD Jump!
I've been listening to that song on and off for years because I happen to love it and that album as well. Most times I've always thought that, no, time doesn't move "so slowly"... it moves much too quickly.
Take my garden for example, I've been tending it as best I could for some time now and already I see a few little teeny tiny tomato fetuses (I don't know what they're called when they're mini tomatoes the size of a pea). How quickly they grow and yet the seedlings were only planted in what seems like only days ago. Yet, I stop and remind myself that it's already June. June, the sixth month of the year. June, summer Solstice is upon us, we are half way to winter Solstice. June, six months since I was admitted to the Heart Institute. Six months have passed, that's 6 months less I have to live. If I am gifted with 4 years, that's one eighth of my life left. If I get 2 years, that's a quarter of what I have left.
Time doesn't move slowly, it races by. Except of course if you're waiting for something.

Time really has passed so painfully slow the past few days - waiting, waiting for signs of life, of things to turn. The saying "no news is good news" is wearing awfully thin around here. It's been over 48 hours since the Step-Son went into cardiac arrest. Although he's now thawed out, he's not yet conscious. Tests for brain damage/brain activity are currently being done. How one can do that when someone is still in a comatose state is beyond me. How can you test memory recall , cognitive functioning etc. if the person is not even awake?

Time moves so slowly when one waits, waits for Pacific time to catch up with our time. When our morning is over at noon, their day at the hospital has only just begun. The earliest I get a text here is a 3pm. If I fly out, I know I wouldn't be of any use there, perhaps only get in the way since there are loads of people around him - hoping, praying, meditating, etc. on him to wake up, on him to pull through. A times I'm told it's crowded that people can only go in shifts. The positive note is that if and when he wakes up he won't be alone - unless it's the dead of night and eveyone's decided silumtaneously to get some rest.

Back in Ottawa I'm getting jumpy everytime I receive a text message. Is it good news or is it bad? It's some news that's for sure. I wouldn't get a text if it wasn't news. Sometimes hours will go by without reading a thing and that's when I realize that I would rather get rattled with a text than read/hear nothing at all. Thank G-d for technology, I'm not sure how people communicated so cheaply in the past. I've come to accept that technology is here to stay and like it or not, it really helps gets messages across. It may be impersonal but the greater the amount of people one knows and the further apart they are, the easier it is to disseminate all this information - necessary or not.

Althoug in my own life, time moves too quickly, time is essetnially running out. At the very present tense, time crawls at a turtle's pace at best. At worst, it stands silently still with no change, no signs, nothing to go on. Here in Ottawa in a house that feels oversized and eerily quiet I'm helpless to do anything for my Wife but send prayers of healing, Reiki and love. She was warmed when I told her there are thoughts/warmth/prayers/ etc. from everywhere in between to both coasts. Atlantic and Pacific. (Which reminds me, I still have to contact her best friend in Sask who was the first to know Thomas' existence.) And of course, I net-work for her from afar. (One friend's already given us contacts for excellent cardiologists out there should he wake up and need them). I've always been the communicator of the family, it's times like these that I don't mind it whatsoever. It's the least I can do during this unbearably long and painful course .

Tuesday, June 16, 2009

One cardiac patient in the family is enough

As if things weren't already stressed for my wife. I know she's having a very hard time coping with this whole loss and pending grieving. We've been slowly, apprehensively approaching the purple elephant in the room and started, delicately talking about my illness and how devastated she's going to be (her words, not mine) once I'm gone.

This morning I had a family friend drive her (and me to say goodbye) to the airport. We have another family emergency. Both of us are starting to get very tired, very worn down and at the precise moment we need to be strong, for the one in our hearts just lingering on the brink between life and death. You see, late last night, my step-son, her 17 yr old son's heart stopped. No one knows a thing over there (except that there were NO drugs in his system), but with her medical training she has a few suspicions about what it could be (prolonged QT). As we frantically packed her bag, we made sure she had a clean (not faded) paramedic hat, t-shirt etc. to arm her when dealing with the same institution (Burnaby Gen) that mis-diagnosed and missed her then sister's football sized-tumour back in the 1980s. She needs not only the spiritual strength to deal with incompetent suburban/second rate hospital doctors, but the outside appearance that she can't be talked down to and knows exactly what it is she's dealing with. Then I gave her one of our stuffed turtles to give her comfort I cannot physically extend thousands of miles away.

So as we said our goodbyes in front of the airport security gates, tears rolling down our cheeks, embracing ever so tightly she whispered to me that I'm supposed to be her only heart patient. If things weren't in such delicate balance between life and death right now, it might actually have been cute enough to laugh.
Not right now.
Right now, there are no answers, only prayers. There is (another) one of us who's heart just decided to rest. From all the reading on spirit and death I've been doing this feels like a very precious time - it's the first 24 hours that a spirit, if it wanted to, can just as easily keep on going rather than return back to its' earthly container. We're praying that is stays. I'm praying that the Wife isn't swallowed up into the Ocean (where she grew up) of heart grief, loss and death. A mother should never outlive her child, wife, sister.

This really drills home to me why, even with all the memory loss, bodily functions loss, work of patient care, etc. I would rather someone depart slowly (with having more than a month left) from this earth. People just don't function well on panic and zombie-esque like responses. People don't have the time opportunity to say goodbye etc. I just can't reiterate enough and at this point I wonder why I am even needing to repeat this. It's not as if Gd listens.

I'm surrounded by our cats, one by my laptop, the other beside me asleep. I can't do work and jump every time the phone goes off even though I know it's too soon to get answers - unless it's the answer none of us wants. So, perhaps I'll get lost in prayer in the garden, Gd knows I am completely and totally scattered glued to the phone, Internet, etc. waiting for her to land, to talk to doctors, to see Thomas, to get answers and for that symbol that he's decided to return to his container rather than dance around above his body watching all of us. I've been there, lingering above your unconscious body knowing how easily it is to slip through the veil to the other side. The light is so, so, infinitous (is that even a word?). That happened on the operating room table when I was 13, that's for another entry.

I wonder, for an instant, which method of death a care-giver/spouse etc. would "prefer": immediate or prolonged? It's not a fair question to ask but is hell easier to cope with when you only get little doses everyday for a year to three(four) or when you get it all at once?


I'm still very much decidedly more fond of life ending slowly, with all that disease entails than ending abruptly. Currently my bedtime reading consists of a love story through illnes and death: "Grace and Grit:Spirituality and Healing in the Life and Death of Treya William Kilber". It's pretty dense reading particulary because Treya' husband happens to be some big transpersonal psychologist/metaphysicist. Without giving a book review I have to reflect about how, despite human differences, we are ALL alike. The book spans 5 years of her waxing and waning battle with cancer. It's about as long as I am hoping for. I'm just past the first year of illness where I am finding I relate with about every second sentence she writes on. De

Wednesday, June 10, 2009

I won the lottery

Slow death or instant disappearing act? Which way would you have it?
With all the emotional upset that this slow-death process causes, I would still rather have a slow death than dying in an instant.
There's so much pain and turmoil in watching a loved one die, but the upside is that you know time is precious, you behave accordingly (hopefully) and you use the time well. Time becomes meaningful, or lack of time becomes meaningful. Dieing in an instant causes panic and confusion (among other things).

I write this today knowing that a loved one is now safe and sound and not near death (or imminent danger) - but for a few moments this person's fate was not known. There was (another) shooting in the US and someone I love was in that building. This really shouldn't affect me, I know, because I'm not her spouse or love her on "that" level however it made me stop, stand in stillness and think and reflect for just a moment had the text message been anything but what it actually was. When the text came in saying she was OK but I had not yet known what she was OK from, I actually replied jokingly "what there's an attack/shooting in DC?" Imagine my sunken heart when then answer was affirmative. How, in an instant, her life and the lives for those of us around her could have changed and how, at that moment, my shopping basket full of paints lay on the floor as I read my text with disbelief and worry.
I cannot even begin to imagine how worried her spouse is. If I'm shaken, spouse must be like a leaf blowing in the wind: shaky and fluttering. As the details came in I became more and more grateful for her safety.

Some argue that sudden death is easier - that you don't have to watch the loved one lose bits and pieces of their independence, their personality, etc. I do see and comprehend that point but I guess I've always believed that even when the memory etc. is gone, the spirit of the person is always there to connect with - until the day it just isn't there anymore. Death in an instant is not my preferred way to go, or to have loved ones go. It's too much of shock.

Today's events, this moment in time, has made me realize that as hard as my living with death is, I'm one lucky lady to have won the lottery of time. Yes, I won the lottery! I haven't been gifted with 'more' time. I have been gifted with the consciousness that I am slowly dieing (yes, I know, we are *all* dieing, that's the nature of living, but some journeys' are longer than others). Today it's a gift because it makes me be grateful for every waking moment, for knowing that I have some time left before I depart, that I can get around to saying the things I need to say to people and perhaps even finish smaller projects.

This gift is definitely a double-edge sword. The days when this gift is coated in gratitude are the days I feel special enough to know how precious my remaining time is.
The days when this gift is coated in depression are the days I feel overwhelmed, sad and angry that I just don't have enough time to complete my dreams & goals.