eulogy for my brother

“He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last forever: I was wrong."
-W.H. Auden, Funeral Blues

To paraphrase Emily Brontë, my love for my brother was like the eternal rocks beneath, not always visible, not always a source of delight, and no more a source of pleasure than I am to myself, but necessary, it resides in my bones, not just in my heart, or my thoughts, it lives in every cell in my body. Whatever souls are made of, his and mine are the same.

To say John was brilliant, or merely complex would be an understatement. He was so many, many things, - to paraphrase myself - a brilliant creator and solver of puzzles, a talented player and lover of music, a gifted conceiver and expresser of visual arts – be they paint, pencil, wood, clay, or words, and an inspired and - sometimes overly - creative chef.

He created. He created games, puzzles, paintings, delicious food. He created a home for his daughters.

He made you laugh.

John would have had you in stiches by now. He was the funniest person I’ve ever known. Brilliant, witty, irreverent and always ready with a joke or amusing observation.

Everyone in this room has laughed, and not just once because of something John said or did. He was the original photo-bomber, he was always ready to drop to the conversation lowest common denominator, which generally involved loud bodily functions, burping, farting, burping and farting together, burping songs, making fart noises in his arm, in his arm pit, and then drawing everyone in.

When my son first started struggling he sent him homemade Hero cards, featuring Greek, Roman God, with points and skills assigned. Each and every one said “Kicks Butt” and Hercules “Occasionally goes BESERK” The last card he sent was the Uncle John card. The Uncle John Hero was described as “The Sharpest Spoon in the drawer, fancified dancer, can kick his own butt – plus that of Uncle Ruth’s, yep, that’s what he called me when he wasn’t calling me Big Nose. His Attack number was 42, a Douglas Adams reference I’m sure, His Thoughts were listed as “Not Often”, his Symbol was “Messy Hair and Stinky Socks” – although his stinky socks, as many of us knew could be better listed as a Weapon. His special skills were “Sarcasm and Burping” – okay, that part was pretty accurate. The card was quintessentially John, from the stinky socks to the self deprecating humour. he also sent Graham a rubber chicken, a series of original Canadian comic books, still in their protective covers (a state that did not last long), and a hand sewn teddy bear.

He was generous. With his love, with his art, food, with everything he gave openly and freely.

Picture John made for (of) me, 2003

He also called me Big Nose, even made me a little drawing of Big nose. I called him No Chin. It was a special sort of endearment between us. He also called me Bruce, well my whole family calls me that, between that and the Uncle Ruth is surprising I don’t have a gender identity problem. At my wedding he gave a brilliant speech – it included Ode to a Grehian Urn, my driving skills, my applying makeup while driving skills, my applying makeup, singing to the radio, while shifting gears, driving skills – you get the idea. He was brilliant. He was also charming, and a beautiful person all the way through.

Where I have been described as feisty, stubborn, Little Miss Splendid – yes, they gave me that book, John was the sucky second child, the one who charmed his way through things. I would dig my heals in and cross my arms – metaphorically and often literally when faced with obstacles, John used charm. It made me crazy. One fateful year when I was visiting from school I came home to a little brother who was now taller than I was. It was a moment he had been waiting for his whole life. In the den he wrestled me to the rug, sat on me with his hand over my mouth and the poked and tickled me all the while yelling “mom!!! Ruth’s hurting me!!” Needless to say by the time my mother arrived he had jumped back and assumed an injured stance in the corner looking beseechingly at our mother, who may or may have believed him, but certainly played along. That is how my brother rolled. Many of the times I have laughed the hardest, the stuff coming out your nose, tears coming down your cheeks, the immanent danger of peeing your pants kind of laughter, those laughs originated with my brother.

Which makes his ending all the more tragic.

A few months ago, a friend of mine died. He was in his 90s, had lived a full life, was productive right till the end, and then one night he died peacefully in his sleep. We took comfort in that. The rare times we think about our own deaths, this is often the one we want, the good death, the peaceful, after a long well lived life death. This is what we want for ourselves and our loved ones. No one wants to die like John did, no one. There is nothing comforting about his death. It is utterly heartbreaking and tragic. It is unfair. It was wrong for him to die as he did.

The thing about a brain disease, which is what John died from, a brain disease called alcoholism, the thing about it, is that it takes away the personality, and then it takes away the person that you knew and loved. We lost John, but before that he lost himself. That guy, the one who made us laugh till we cried, who sang to us, read to us, who made wonderful art and delicious food, that beautiful person, was lost to a disease that affected and distorted the way he thought, the way he saw the world, and mostly the way he saw himself.

John felt things very deeply, maybe too deeply. One of my first memories of us is me wrapping him in a blanket during a sand storm on a beach. I have no idea what the context of the situation was, what I remember is wanting to protect my brother above anything else.

I couldn’t protect him from this. None of us could. There was never something that one of us did that caused this, there was nothing that we didn’t do that would have cured this, and there was never a way anyone else could have controlled his disease. Cunning, baffling and powerful is how alcoholism is aptly described, and it is, it is all of those things. It took our father, and it took John, both before their 50th birthdays.

John’s behavour for the last several years was baffling, it was heartbreaking. He pushed us away. His brain, his thinking was so distorted by this disease that the only way he could cope was to continue to try and numb his thoughts and feelings. It never meant that he loved any of us less. He loved his family, his daughters and Tamara were his life. That never wavered, not for a instant. He loved us, all of us, and in the end that’s what we need to hold on to. As painful as this has been, hold on to the times he made you laugh, the times he showed his love to you, the times he was his exceptionally lovable and goofy self. It won’t happen today, or maybe not this year, but start to let go of the painful memories, and hold on instead to what you loved about him. Remember him as someone full of love, caring, stinky socks and really terrible jokes. His personal favourite was "you know the corduroy pillows, the ones that are making all the headlines?"

“I myself am made entirely of flaws, stitched together with good intentions.”
― Augusten Burroughs

“He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last ------

I was right. Love is the thing that endures. Love is what we have left of John, love and some pretty wonderful memories.

Hang onto those, and hang on to each other. He loved us all, what we have to do now is continue to love each other, to create in what ever way we express ourselves, eat good food, play games, solve puzzles, and make the odd fart or burping joke.

about that homeless, mentally ill, and intoxicated man

Homeless Jesus by Timothy Schmallz

Dear Well Intentioned Friend,

I know your intentions were not unkind when we talked the other day. I'm certain you had no idea the affect your story would have on me, and I'm somewhat ashamed I didn't speak up more clearly at the time.

Okay, here's the thing. Your story? About your daughter's dance class being threatened by a lone homeless man, the one where the instructors bravely hid all the girls (who 'were practically dressed in bikinis') in the locker room to protect them? The story where the lone homeless man who may have been intoxicated, who likely was mentally ill  (spoken with your voice lowered), had come into the lounge near the studio and sat down to watch the tv, you remember? Do you remember telling me how horrified you were, what danger these girls were in. Do you remember when you first described the man that I said, poor thing, he was probably just looking somewhere safe to rest?

Here are some things I didn't tell you. I have worked with homeless people for the last ten years. Yes, many are mentally ill, many are alcoholic or addicts or both. All of them suffer greatly. All of them are human beings, who love and are loved by someone. I didn't point out that mental illness and substance abuse are medical illnesses, just like cancer, or diabetics. I also didn't mention the reason many of them are homeless is because of inadequate resources to treat these disorders,and the tremendous negative stigma that goes along with being homeless, with being an alcoholic, with being an addict.

At one point while you were describing in great detail how horrifying and dangerous this man was, I did manage to quietly say, just like my son. I don't think you caught my meaning. I don't think you understood that what I was saying was that my son is homeless, that my son is mentally ill, that my son is an addict, that my son has curled up in all sorts of places trying to get some sleep, some comfort. I don't think you realized that while you talked about saving these girls from this threat, all I could see is the countless cruelties that the homeless, mentally ill suffer, that my son suffers. The diseases themselves and the heartbreak they cause to families are bad enough, but the stigma that well intentioned people attach to them and then use as a justification to treat them badly, as something less than human, and something not worth compassion, or love or comfort, the stigma is the worst of it all.

Change mentally ill to someone with cancer, with diabetics, suddenly it seems horrifying that someone suffering from cancer, or uncontrolled diabetes would be ostracized, would be seen as a threat to children.

Eventually all I could see was someone treating my son with the horror and disdain you very eloquently described, all I could see was the pain and the humiliation he has suffered. All I could see was my little boy being threatened, and there was nothing, absolutely nothing I could do to save him. All I could feel was all the pain and the heartbreak of the last several years as I fought to keep my son sane, sober and safe. You see, my well intentioned friend, I too am a mother, a very protective one, and I do understand the overwhelming desire to protect my children. My daughters took dance when they were young, I did my time sitting in studios, going to recitals, I do understand that part, to this day I would do anything to keep them safe. I also love my son with the same intensity, and I have done, and still do everything I can to protect him. Sadly with his disease part of doing what's best for him and my daughters is to let him hit a bottom so he can hopefully one day come back to me.

I couldn't tell you any of this. All I could do was to cover my face to hide the tears and run away. When I got to my car I sat for a very long while until I stopped crying and could drive home.

The other thing I didn't tell you is what I may have in common with the homeless man, I'm an alcoholic. I was raised by one and am related to several. The disease runs rampant in my family. I've been told to say I'm a person in long term recovery, meaning I'm sober and have been so for quite some time. I don't generally tell people this, because unlike, say cancer survivors, there aren't any coloured ribbons, or fun walks for alcoholics or addicts, even the clean and sober ones. People don't look at you as someone who has fought - and remains constantly vigilant - against a chronic and deadly illness, and survived, people see a drunk, an addict, someone who has a flaw in their moral character, someone who cant' be trusted, someone you can't leave your children with (yes, I have been at the receiving end of all these attitudes) people look at you as something that is less than normal people. That's why I don't generally share that about myself. That is also why when you told me about the homeless man the first thing I felt was empathy for him, and the pain he must feel at fear and loathing that he experienced in your daughter's dance studio, and likely just about everywhere else he goes.

I didn't tell you any of this, because these things are usually too raw for me to say out loud. These things have brought judgement and negative stigma on me and my family, and some days I'm just not up to saying out loud that this is wrong. This is so very wrong. That it is not okay to view people as less than. No is less than anyone else. I think if people could get that straight in their heads the world could be a more compassionate and beautiful place.

So, maybe, next time you see a homeless person, someone who is mentally ill, intoxicated,maybe, you could let some compassion enter your viewpoint, and not let fear guide your thinking and actions, maybe you could lead with kindness and compassion, just a little at first. Or maybe you could, just for a moment, reexamine the way you view the homeless, the mentally ill, the addicted, the alcoholic. Maybe that could be a start.

I also publish here http://emmaandtoad.wordpress.com/

Of shoes, and ships, and sealing-wax, Of cabbages, and kings...

So. It's been awhile. I'm not too sure about writing even now. It's not that I couldn't think of anything to write about, I've written pages and pages in my head these past few weeks, but nothing ever came past my very busy brain.
 

I wrote about Trayvon Martin and how my heart breaks at the hurt and injustice and our ability to be cruel to each other. I included the biracial Cheerrios commercial and the hate mail it received.


I wrote about Cory Monteith and the pains of addiction, my own struggles and the struggles of those I love, and about hating the deadly disease of addition and not the person addicted - a difficult thing to do, something you have to recommit to daily.

 If this were only cleared away,'  

They said, it would be grand!....

I wrote about how I spend my time looking at the world differently now, like I'm seeing so many things for the first time. I spend so much time looking at couples and trying to understand how having a partner works. I never quite got this concept. I was so very sure in my youth of  the ways things were and the way things ought to be; I wasted decades in certainty and frustration.

I may still write about the Royal baby because the birth, along with so many things these last few months have moved me to tears, tears that I don't always entirely understand.
 
All this, and songs on the radio, people walking their dog, a photo of a young man who would have been my son's age had he not killed himself 2years ago. .. 

 I know this, I am more open than I've ever been. I feel things more deeply - all things, joy, pain, love, sorrow, and very rarely, anger.

I weep for you,' the Walrus said:

      I deeply sympathize.'

With sobs and tears he sorted out

      Those of the largest size,

Holding his pocket-handkerchief

      Before his streaming eyes.

So, yeah. I'm sort of just hanging out. 'On hold' it would seem. Lots of internal musings, not too much external manifestations. I think, maybe, if I had a close friend I might process some of this more quickly. It's mainly me and my dog, me and my sketchbook, me and myself doing lots of pondering, lots of observing.

I don't think I'm lonely, precisely, I am on my own however. In the next few months two of my three children will be moving away, and a large part of my existence will be open to redefine. I look at the next 5 years of my life and see some major changes. I may go back to school. I likely will move from here, maybe, .not sure, more pondering required.
 

The time has come,' the Walrus said,

      To talk of many things:

Of shoes — and ships — and sealing-wax —

      Of cabbages — and kings —

And why the sea is boiling hot —

      And whether pigs have wings.'

Till then, I will try to write more, to develope a disipline about daily writing again. I have enough time, and I waste too much of it.

what? no lasagna?

My son has a chronic illness, two actually. This summer and into the fall one became progressively worse. It affected every aspect of his life, school, friends, family and increasing aspects of mine and my daughters lives. I'd like to add that by this summer I'd already spent 3years with different professionals, put my son through hours (and hours) of testing, became an unpaid professional advocate of all things Graham.

After many attempts by various professionals and unsuccessful outpatient treatments it was decided to hospitalize Graham to gain control of his condition. He was in hospital for 34days. I drove the 50 minute drive there and back twice a week. I spent a lot of time in the car. Our whole family spent a weekend at the hospital and in a hotel for a family education weekend to prepare all of us for what our new home life would be like.

Graham's condition runs in both families, mine especially. It killed my father, has hurt my brother, and I live with it daily. Genetically speaking having three kids was a bit like spinning the roulette wheel, I could look back now and think I was irresponsible knowing the odds were at least one would inherit this disease. At the time I didn't think about it, and even with the knowledge I have now I would still want each of my kids, just the way they are.

People knew my son was in hospital, that I was going back and forth twice a week, that his father was out of the country for half of the admission. Early on I had someone invite me out for tea just to confirm that he was actually in hospital. That cup of tea was the last I heard from that 'friend'. She had her gossip and didn't need me for anything else. We've had pitying looks, forced smiles and people purposely not looking. I've seen the fear/relief that is wasn't their child/family who was suffering. That fear kept many people distant. My daughters were particularly courageous, and faced this head on. We did have some actual friends who showed genuine concern, one even showed up with cookies and just listened, that gesture still brings tears to my eyes when I think about it.

My daughters became more self sufficient, and more than once had to step up into a parent like role. My ability to do my job decreased, and forget any social life. Yet during all these months no one ever showed up at our door with the standard pan of lasagna. We didn't receive any cards, Graham only received cards and notes from us, one friend and my brother (my mother reluctantly sent a formally worded typed letter, after I asked several times).

In one way it was a relief not to be in charge of Graham's care, but that came with guilt, and the knowledge it was only a temporary reprieve.

Graham came home mid December, horribly behind in school and 10days before final exams. He had 16 hours a week of outpatient treatment (add 4hours of driving time to that) he had to attend. His time was school, homework, treatment, sleep with room for nothing else. Catherine and Lizz were on their own 4 nights a week. Still no lasagna, no casseroles, baked goods or cards. I asked for help, and a few very kind people came to help with the driving a couple of times a week, help I truly appreciated.

Now, if Graham had cancer, or been in a terrible car accident people would have been lining up to help, our freezer would have been full of food, and I would have been able to openly grieve for the healthy son I had lost. There would have been gifts, prayers, cards, phone calls and support for my family.

Graham doesn't have cancer, and he has not been in an accident. My son is an addict, and there are no cards, balloons or special stuffed animals for addicts. Despite the fact that addiction is recognized by the American Medical Association as a Disease. Despite the fact that Insurance companies and medical doctors all treat it as a DISEASE, addiction disorders carry a shame and stigma that they don't deserve.

Six years ago when I got sober I did it in secret because I couldn't deal with the overwhelming shame, failure and judgement. I had watched my father die from this disease. Still some friends found out, one of them refused to let me drive her child to my daughter's birthday party. For the next few years I was 'watched'. The only place I found compassion was with a group of my peers. People who had been through hell, and were supportive and compassionate because of it.

So now I watch people judge my son and I want to scream. I want to shake them until their prejudices fall out of them. I want to point to the number of people who have died, not from a moral failing, but from a deadly disease, but it's no use. People are afraid, and it's easier to to believe that if you breastfed, if you never spanked your child, if you read them the right books, had them in the right activities that your child would be safe (did all of those, thought that myself). That if you only applied a little will power that this sort of thing wouldn't happen. It's easier to be afraid and blame, to see addicts and alcoholics as 'other' people, people that lack will power, people that are weak, dirty, dangerous and not worthy of compassion.

I can't talk about how afraid I am, how powerless to fix my son I am, so I smile, I nod and keep my chin up, and I write, I write pages and  pages, and the occasional blog.