I would like to tell you, that for the last week, I had an amazing time. I would love to share with you the memories I made. How a very good friend and I sat down and talked for hours about anything and everything. About how we packed up the dogs, and our camping gear, and headed up-Island for a couple of days. How we hiked beautiful trails, and discovered breath taking beaches. How we gazed at the brilliancy of the stars in an extremely secluded area, and marvelled over the milky way. How we (though mostly he, in an amazing display of fire building) built a raging campfire that kept us warm long into the night as we talked and talked in the darkness. How good it was to physically sit there, in the soft glow, in the warmth of the fire, and the presence of one another as we spoke of life. And then, when we returned, how he scaled crabapple trees, as I stood at the bottom catching them while he threw them down to me. And how we watched them simmer and began the process of making apple jelly, before I had to take him back to the ferry and send him home. And how I learned so much in 6 short days. And how the whole experience could not have come at a better time. How it healed my soul, just that much, and how the places we went, and the beauty of nature restored slightly the bit of me that has felt broken lately. And how, as I waved goodbye to the boat as it made its way out of the harbour, a few tears escaped my eyes, as I realized I was very sad to see him go.
I would like to tell you all of this. And I would like to remember all of this, in the time to come.
Because, when I returned to the real world, here was the shared birthday of my (now) 8 year old step-brother who is no longer my step-brother, and my (now) 6 year old step-son, who is no longer my step-son...and who truth be told, never was more than a dream of longing in my mind. I hadn't expected it to hurt, quite so much. Nor did I expect to hear the news that they had to use a defibrillator on my mom, in an emergency manoeuvre to reset her heart rhythm. Or to have to calm down a hysterical grandmother, just hours after my return. I didn't expect to have to sit down with my brother and convince him that the best option, right now, is for him to fly there, and be with her. To leave his apartment behind (since he has been struggling to pay the rent the last few months, and has no job here to tie him down) and stay with family for awhile; to help him make the decision he has been putting off, by verbalizing it. I do not want to feel helpless in the fact that being there myself is not possible right now. I did not want to choose. I do not want to choose. I do not want to be the tie that binds, the mediator, the healer; though I want to be there, and I want to help, and I want to heal. I do not want to be me. Because that is who I am, that healer, and that is who I will always be. But I can't heal this, and I can't fix this. And that goes against every single fibre of my being.
I want to disappear into that great expanse of wilderness, and get lost once again under that clear night sky.
Today was your birthday. Eight years old. This year, much like last, was a year of turmoil for you. You grew, and you thrived in school. Your stutter all but resolved itself. Suddenly language wasn't quite so difficult; you could recognize the letters of the alphabet by sight. You began to put them together. You learned to read...not just use that amazing memory to recite what you had heard. You typed out small words to me on the computer, along with the silly faces you would make on the webcam when we talked. You made friends at school and in the neighbourhood. You suddenly showed an interest in video games, sports and loved being around all of those other kids. Your social skills improved to the point that you were no longer that shy scared little boy, and if anyone asked, they would never have believed you ever had been.
You said goodbye to your mom, and fell further in love with my dad. Inseparable, the pair of you bonded like father and son, and best friends. And your beautiful amazing heart shone through in the love that you showed him, and everyone else around you.
When I moved away, we talked, and we talked, and emotions ran righ. You were terribly angry, and desperately sad. You couldn't understand how someone you loved, someone that loved you so much, could possibly say goodbye and leave you. And just how exactly do you explain to an almost seven year old that sometimes, even when you love someone more than they can possibly imagine, you have to say goodbye, but that it isn't a forever goodbye? Through tears you asked me "Does this mean you aren't coming back, and I'll never see you again?" And I reassured you that I would be back to visit. That we would talk on the phone, you could call me anytime you liked, and we could see each other on the computer.
How could I have known then, that the words I spoke were lies?
We had the occasional goofy session on the computer, where you proudly displayed your newly acquired language skills, we made silly faces at one another, and my father told me of your exploits. But I never came back to visit. I never came back to play, to listen to you read. I never came back to see all of the magnificent wonder that you wanted to show me. I took for granted that you would always be there.
And now, at 8, as you've had to say yet another terrible goodbye, I wonder whether it is any easier. I wonder if you feel them anymore. I wonder, just how many it will take to crush the magic in your heart. You are wise, my little man that is no longer mine. Pain and sadness have made you wise. Yet in that, there is compassion, joy and empathy, but above all else, there is a resounding sense of love. I hope you never lose that sense of wonder. I hope there never comes a time when that delicate balance in your heart is broken beyond repair. You have a beautiful soul little brother. Happy Birthday Declan. I will always love you, no matter where you are.
Dear Family,
Have to tell you how weird it is to receive condolences BEFORE the person you love and care about has died, and is in fact still alive. I also do not need to be told by all of you (eight, count 'em, eight today alone) that you hope I make it to Owen Sound before it is too late, and then you all ask, "What am I going to do?" The answer is, I DON'T KNOW. Which is what I told you. All eight of you today (and however many of you I talk to tomorrow, of which I'm sure there will be many) I heard the timeline yesterday just like all of you did, and so it will take me a bit of time to figure out what to do, and just how to do it. Also, since I am in constant contact with her, I do not need to hear from each of you what you have discussed with her. I actually DO talk to my mother, oddly enough. And also, I'm not sure how it is that all of a sudden, after 6 years, you have put together the fact that she is dying. Yes, she is. She has been, despite your many comments of how well she looks, and that she is exagerating, or faking how sick she actually feels (for the last SIX years), and your overall denial about the entire situation. She is dying. It is what it is. And I will do what I can, and I will figure it out, but back off and let me accomplish that.
Blah. And now that I have crazy ranted like the crazy person I actually am, here is the non-judgemental (or at least less judgemental) version.
Dear family,
I am sorry that the timeline caught you by surprise. I appreciate your thoughts, and condolences, and yes, I am working on trying to figure out just how, and when I will be able to get back there; hopefully sooner rather than later. I realize that grief has its many stages and I hope that you are all okay. I will keep you posted on what my plans are to make it easier for you, and I talk to mom often, so she is keeping me posted as well. We will all get through this, and I hope, in all of this that you are taking good care of yourselves.
I had set out to fix my sleep routine last night (I've got one of those: Dear Jess, I can no longer tolerate your lack of sleep and food so I am giving you this headcold as a warning, signed your immune system, letters) so I crawled into bed thoroughly exhausted, just knowing I would fall into a deep sleep. I then proceeded to toss and turn, and beg my body/brain to let me sleep, ignoring the pain in my sinuses and the pain beneath my arm, but by 5 am I was still awake refusing to get up from that bed. The fight was futile (but, there is always tonight). I did manage some sleep, in the end, a couple of hours. And I awoke to a call from the youth clinic. A few weeks ago, they had discussed painting the place, to make it more homey for the clients, and I'd offered to help. So today I went painting. It was actually a ton of fun...the colours we painted are vibrant and intense, orange, purple, blue, green, yellow (I'll try and take a picture of it to show you) and I came home feeling extremely tired, but so very satisfied. And I returned to the following comment.
Logan: I have some bad news, but I don't know if I should wait for mom to tell you.
Now what does one say to that? When you feel the dread fall over you, when you know that something terrible has happened, but you don't yet know what. Bad news in our family means only one thing. That someone has passed away; be it a family member, or a long term friend. Of course, I told him to tell me.
Turns out the results of my moms echocardiogram came back. And her heart muscle is severly damaged (not new, but worse off then we thought), which is why the fluid has been building up in her chest now as well as in her legs. And we have a timeline now. Two months. They want to put her in a nursing home....to which all of us (meaning Logan, mom and I) vehemently oppose. If she has 2 months to live, it will be at home, on her own terms. A person deserves to die on their own terms, if they are given the opportunity, I think. I am frustrated that she is there, and I am here, and there are 5 provinces separating us. And that that was my choice. For now my uncle is helping her, she has given my brother strict instructions to get going on the illustrations for the childrens book I wrote (an upside to mania...creativity) because she wants to see it before she dies, and Logan and I are putting her christmas present together earlier ( a digital picture frame of our adventures, since she always wishes she could come camping, walk the dogs, see the ocean).
And mostly, I am calm and cool and collected about the whole thing. But you know what? Six years of grieving doesn't make it any easier, even when you've passed through all of the stages and are into acceptance. It just doesn't. And sometimes, life really sucks.
There are things that heal, given time. Broken bones, pulled muscles, a deep cut, bruises and scrapes, even, a broken heart. The body is a remarkable thing, in it's ability to heal, regenerate, repair; begin again. But there are some things that even this amazing creation cannot do. It cannot yet fight AIDS. It cannot always withstand major trauma to the heart, brain or other organs. It cannot stave off cancer.
It was shortly before her 48th birthday that my mom was diagnosed with breast cancer. I was almost 18 when she first felt the pain, and then, the lump. For weeks she put off going to the doctor until I begged her, and forced her to go. It is a scary thing, this fearing and not knowing. But it is not as scary as knowing for sure.
From the beginning, things went wrong. Thinking it was a cyst the doctor tried to aspirate the fluid. Except, there was no fluid, meaning it wasn't a cyst. Panicked, he called and set up an ultrasound ASAP. They did the ultrasound only to send her home saying that she was too bruised from the needle, and should come back in a few weeks for another ultrasound. A few weeks later showed that it hadn't been bruising at all, had in fact been the cancer, which with the aspiration had grown much larger, very quickly. They performed a mastectomy. She was a stage three, but the cancer had spread throughout her lymphatic system. She was also told that she carried the genetic form of it (did you know that this exists in 10% of women?) which she didn't understand, as no one in our family had ever had breast cancer before. Her prognosis was not good. With treatment, at the very most 2 years. There was a time when we all grieved in this knowing. And then my mom decided she wasn't ready to give up the fight yet. They scheduled her for 6 months of the most intensive chemotherapy possible. It made her incredibly sick, but through it all, she was her stubborn self, pretending that she was okay, working and managing her own business. When she had only 2 treatments left, I got a job working at a camp in Northern Ontario. My mom pleaded with me to go. She wanted me to have a carefree summer, to get away from all of the stress for a while. And so I went. And back home, my mom suddenly decided she couldn't take anymore of the chemo afterall. The doctors were frustrated, she had endured so much already, there were only 2 treatments left, just two. And so she did the two treatments. And then she had two strokes. It happens, sometimes with chemo. The heart gets burned and damaged, the internal organs, blood clots form, and make their way up into the brain. She slowly learned to walk and talk again, a complicated process that angered and frustrated her. But she was never quite the same.I have the first letter she sent to me when she could finally write again, it is almost indecipherable, but in it, she asks that I stay at the camp, that I not worry, and that she is okay. An avid reader, she no longer could. She would fly into rages over which she had no control, and would later sob, completely spent. Her once kind words had turned hard and bitter. She had no patience, anymore.
But things improved. Slowly and surely, they improved. Her words came easier, her patience improved. The business was sold...it was too difficult to run, without the person that kept the whole place going. And, as I helped her relocate, and headed off to college, there were a few brief moments where everything was calm. Then one day, her ankles began to swell. And then her legs. And then her entire body, as her heart gave way to congenital heart failure.They tried coumadin to keep the blood clots down, among other meds to stop the fluid retention but her body reacted, and she erupted into terrible wounds that wouldn't heal. Medication after medication was tried. Her quality of life rapidly deteriorated. Mostly, she could just lie around with her legs raised to keep the swelling down. She ended up in hospital, delirious on pain medication, and I found my way there from college. Hospice came in with wills, and living wills, and we discussed her wishes. We cried a lot, and I'd tell her funny stories to make her laugh, and stop my tears as well as hers. She looked mostly like a skeleton as she lay there on the bed. She couldn't bear to eat the hospital food, so my brother brought her yogurt and fresh fruit, which she managed to nibble on. She'd hear nothing of this dying business (though we did all discuss it, and decided my brother and I would be the ones to make the decision, and she requested a DNR when the doctor asked whether to resuscitate her in an emergency or not), no she would have none of it, she was going to see me graduate. And, when she found out I'd been made valedictorian, she was even more adamant. She signed herself out of the hospital and made her way to my graduation, proud as punch. And later, at the buffet, she begged for the fresh fruit, and she ate, and she ate, and she ate. When she hit her 50th birthday, the milestone she crossed at that two year point, the celebration was immense. From there she gained her strength back gradually and set her sights on grandchildren as the next goal, though the heart failure worsened and worsened, and her liver struggled.
Lately she has been in and out of hospital with lung problems, fluid in the lungs now, and the doctors think kidney failure starting. The hospice people have come again to see her with their living wills and will kits, and she just laughs and shocks them. But she has been dying for 6 years. Literally. At least twice a year doctors have figured that would be it, but somehow she proves them wrong, time and again. We have talked about it. All about it, her wishes, how she wants me to help her write a funny obituary that has everyone laughing instead of crying, no funeral, just a plain box, and cremation. We have had many times to prepare. We joke about it now...because if you can't joke, then the pain of it can be overwhelming. We talk about the whole thing. How sometimes the treatment, doesn't outway the side effects. If she had it to do over...she wouldn't have done it. Or if she had, she'd have listened to her gut, all those long years ago. There are hard discussions, painful discussions, but mostly she just wants to hear my voice. She always asks to talk to Kodi, and I do my best to make him speak. She wants to laugh when I tell her stories. I can hear it in her voice, the happiness when I make her laugh, because it happens so rarely otherwise. And so I do, with all my heart I make her laugh and laugh. I do my best to mitigate the worry I have caused her. In my way; in the only way I can right now being 5000 km away, I ease her pain, and comfort her, and make her smile.
It's been two weeks, since I first felt the pain, something I've never had before. I ignored it for awhile, presuming it to be a pulled muscle (from dog walking those crazy animals). I did a self exam today and found no lumps. Nothing unusual. But the pain is getting worse, not better. I wake up with it, it reminds me it is there when my arm brushes against it, or I move a certain way, and I go to bed with it. I am certain it is nothing. But there is fear in not knowing. And the fear of knowing for certain that it might be something is even scarier. This much I know, as I knew then. But...in all that fear it exists. And if it still exists by Monday, once I am done making grilled cheeses at the youth clinic, I will see a doctor. And then all will be well. This remarkable, amazing creation will prove itself well, or heal and regenerate. And if it isn't, and it can't...there will always be the laughter.
Well...they aren`t really strangers, although since I've "lived" here since November, it's only really a couple of neighbours that have been friendly towards me, and that I have in turn befriended, and only just lately. Two of them, to be exact; the Superintendant, and her neighbour Karen. It was a chance meeting that evolved slowly. The Super owns 3 yorkies, and karen has a big old goofy, silly 2 year old long bearded puppy named Connor. We often meet at the offleash dog park just down from our house. Connor is a huge fan of Kodi and Sophie, though in particular Sophie, because she will run and jump and play, and run run run with him. And Kodi will sniff at and follow the little ones, backing off when they show dominance, and trying to figure out for the life of him how to play with something the size of a football. And so they played, and we made small talk, as the dogs happily approached us and shook the ocean spray all over us, while I laughed, and they cursed.
Then one day I returned from walking them to find a bag of chinese food, addressed to Logan and I from Connor. A few weeks later, when I opened the door to take them outside, I found a big rubber bone placed neatly on the top step. Loving the game, I packaged up some of the chicken soup I had made, and some jerky treats for Connor, and left them quietly outside Karen's door with love from Kodi and Sophie. Then there appeared another rubber toy, which Karen had stuffed with food, and which Sophie loved so much, that she attacked it with a vengeance until it lay in ruins. And then tonight, when I heard a knock at the door, and I opened it to see the Super standing there with a plate in her hands. On it lay two of the most beautiful steaks I had ever seen. She explained that she'd made too much...that she had those two extra...she was going away camping for 4 days and she didn't want them to go to waste. It was a convenient story...a nice story contrived of eloquence and tact, and I was grateful for her charm and kindness. I wondered if she knew that earlier today I had gone for the very first time in my life to a charity to pick up a food hamper, because there is only so long you can go without food before your body shuts down. I wondered if she knew how difficult it was to do so...how humbling it is...how it brings on almost a sense of shame (though it shouldn't). I wondered how much she knew. I wondered. And it was the most delicious steak I have ever eaten, and I savoured every last bite. And I thought that Logan down in his apartment was thinking the same thing too.
And as if that wasn't kindness enough, later I heard the soft patter of something outside the door, and when I opened it, there lay four milkbones, one on each step, leading down in a trail. It is a wealth of kindness. And one day soon, i will be able to repay it in turn.
So, the latest on the neighbour front today. It has been so long since I heard a complaint, that I was sort of due for one. You all remember the last complaint? The one where we were playing scrabble too loud? Yep. So today my neighbour approached my brother, and the conversation went like this:
Neighbour: Is your sister moving out soon?
Logan: Uh no, why?
N: Well, thats too bad.
L: What?
N: It's just that she laughs so loud, and there really is no soundproofing in this place.
L: Uhhh Huuuh. Okay then, well, thanks for letting me know.
And, in my neighbours defence, I really do laugh very loudly. I can't help it. It is one of those belly laughs, that sort of erupts, and has a mind of it's own. And I do laugh...a lot...collapsing into helpless giggles where the tears run down my face I laugh so hard. And people find this hilarious, so they get me going and then take pictures of it....
So, here is my solemn promise: I will try my utmost not to have so much fun anymore. Or at the very least, no after 10 pm.
Last night, one of those sleepless nights that still plagues me at times, I finished the first chapter of the stories. I figured it was best to post them all together. It's the story of the development of my bipolar illness. It's only the beginning of what led to now, but it plays a pivotal role. Because it leads to where my life headed next; the journey back across Canada, how the illness progressed, reared it's ugly head, and surprised me time and again. How I found a place to feel normal, and how, later I would lose that. It's the story about the man who I loved, who loved me, and the whirlwind that followed. It's the story of how I survived.
The energy and the mood stayed. In fact the energy soared, but I was content in that. Dr. McD was happy, the parents were happy. I had evening passes where I would go home and visit the kids. Despite being gone for nearly 2 months, they both threw themselves at me. Because I had the energy, and in part to make up for the time I hadn’t been there, I would play with them: dance, sing, wrestle, run, hide, swing, play, play, play, until they both lay at exhausted heaps at my feet. They thought having me home was awesome, and that this new and improved Jessie was so much livelier, funnier, and more fun in general.
Day passes turned to overnight passes, and then finally to a weekend pass. It was amazing, except for a few minor glitches. Like, needing to run at 3 am, or cooking up a storm of cookies. I would get slightly overwhelmed by the kids energy at times, but then my own would soar, and we’d be back at it. When my energy was high, and I felt good, and so alive, I began to fantasize about getting tattoo’s and piercings, of which I’d had neither before. I babbled incessantly. And the parents, bemused listened, and assured me that there was no way I was getting a tattoo, but I could get my ears pierced if I wanted. My ears, I thought? Oh no, I wanted my lip, my ears, the cartilage, maybe my eyebrow? Oh yes, and I wanted, no needed it NOW. Why weren’t we going? Why weren’t we going right now?? Didn’t they understand this need?!?!
So, with a few minor glitches, things went okay. My dad got me a fake lip ring, just so I could see what it looked like and if I really liked it. I decided to liven things up a bit and wore it back to the hospital. It just so happened to be Nurse Ratchett that was on duty. I didn’t say anything about it, and waited for her to notice. She did. “Wh...when, wait did you have that pierced...when did you have that pierced?” I collapsed in a helpless fit of giggles and when I looked up, even she was laughing.
I was discharged two days later. By the weeks end, I had convinced both of the parents to get piercings, Michaela had gotten her ears pierced, and I was sporting a brand new lip ring, along with pierced ears. It would seem that the energy of hypo-mania was contagious. I was given free reign to visit this place
several times a day. In no time at all, I was given a day pass home. I was
giddy with excitement. I hopped a bus home, met my brother there, picked up my
keys, and we absconded on an adventure. It was a beautiful day. Slightly
hypomanic, my energy level was a little high and I was feeling reckless, but
with Logans help we both survived the day, and had an amazing time. When I knew I couldn’t stay away any longer,
I dropped Logan back at home, and headed back to the hospital. It didn’t seem
so bad going back to it, once I’d had a day of freedom.
It was later, when my
parents noticed that Bluebell was missing, that they called the nursing station
to tell them that I had my car keys. They were all adamant that I turn them in. And
I was adamant that I was not going to. The more they pushed, the more I shrunk
against them, and clung tightly to the keys. Those keys symbolized freedom. I
had had a taste of it, and I knew it existed, and I wasn’t going to allow it to
be taken from me; not again.
Somehow in the mess and confusion they called Dr. McD. He popped in and sat beside me. He searched my face, that face that betrayed me often enough. And his face mirrored my own pain and turmoil. “Not yes Jess. Not yet.” He went on to explain that sometimes the energy returns before the mood does, and that this is the most dangerous time of all. “Please, can we go for a walk?” I asked. And so we did. We talked about birds, and nature, the way the trees were blossoming, and the sound of a woodpecker calling. He never once asked me for my keys. He didn’t even mention them. And so, because he was leaving it up to me, and he was showing me that freedom wasn’t too far out of reach, I reached into my pocket and pulled out my keys. “Dr. McD...here.” He took them in his silent calm way, and we continued on our walk. Finally we returned, and together we approached the nurses’ station. He asked them for an envelope. “Jess wanted to give these to you for safe- keeping. It was entirely her decision, and I didn’t even say a word about it.” They looked at me, with unreadable faces, and I was unsure how I felt. Glad that he had given me the credit, all the while knowing that he had helped me make that decision, without even needing to utter one sound.
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