Everyone knows someone who is prone to losing stuff. They are forever misplacing their keys, phone, wallet, purse, whatever. I always know exactly where those things are. I am one of those people prone to losing the big stuff in life. The most interesting thing I ever lost was my high school. Yup. Not an easy thing to do when you live in the same neighbourhood in the same house since you are a toddler. You’d pretty much figure that I’d know where everything is located and could find my way around blindfolded. I’ll never forget the day I lost the school. I did eventually find it but it took me most of the day.
As a severe agoraphobic, there was no way to get me out of the house without some form of sedation. It started when I was very young. Forcing an agoraphobic child to walk to school and then spend the day surrounded by hundreds of other people in a large building, with recesses outside, is indescribably traumatic. I was forever asking permission to go to the bathroom so I could give myself “time outs” in the small bathroom stalls where I could be alone for a few minutes, relax, breathe, and try to pull myself together. Often have a good cry. Try my damnedest to get the shaking under control so people wouldn’t notice. When I was ten years old my family doctor prescribed sedatives for me at my mother’s insistence because she was exhausted by the constant struggle to force me to go to school at least three days a week, sometimes four. I simply couldn’t cope. I had constant hellacious migraines and emotional breakdowns that I couldn’t control and was only able to sleep every other night. My life was a living hell. The introduction to sedatives provided initial relief, but it’s an old, old, old story that they were the beginning of a different kind of hell for me, one that would damn near kill me. And that’s how I lost my high school.
I was fifteen years old, in grade ten, and my grades weren’t very good. I remember thinking, “That’s enough! I’m NOT stupid! If I do everything I’m supposed to do and get A’s on all my work from now on I can be Valedictorian by the time I finish. I’m sick and tired of feeling like a loser. From now on I’m going to do everything right!” And with that determination I dressed myself in my finest clothes, put on my makeup with the greatest of care, and put on my dress heeled shoes to make myself look as business-like and as serious as possible. I was on a mission, I’m telling you. I wasn’t fooling around. I was going to school that day to become the best student they had ever seen. I would win every award and earn every accolade. But first…I needed to calm my badly shaking hands and knees. A few pills and a few chugs of whatever dad had in his liquor cabinet and I was on my way!
By the time I got to the busy main road which was a straight line all the way to the school I realized I was weaving so badly that people were staring. Uh oh. Thinking I’d ‘straighten up’ by the time I got to school, I decided make my way via the quiet back neighbourhood roads and cut through a small forest park, a route I hadn’t taken in a long time. Not only didn’t I ‘straighten up’, I went downhill, became hopelessly confused and lost in the same neighbourhood streets I’d played all of my life. I might as well have been blindfolded. I did straighten up by the time I found the high school but only because it took me a few hours. I had blisters all over my feet from the high heels I was wearing when I walked into the Principal’s office and told him I wanted to quit. He took a good look at me, as he had many times in the two years I’d been there, and agreed it just might be a good idea for me to leave and come back to try again at a later date. How sad is that? I left my house that morning with the full intention of becoming Valedictorian and by the time I got to school I realized I was such an abominable mess I might as well just drop out of high school. And no one argued the point.
However…I’m really good at finding stuff too. Great stuff. And great people. I found Robyn Emmons, a fellow agoraphobic. All my life I thought I was just plain crazy and loathed myself for my weakness. I didn’t know I had a disorder called agoraphobia until I met Robyn. De-personalizing the issue changed my life. Treating the agoraphobia gave me back the World. I could go anywhere I wanted and do anything I wanted. I had my Freedom. And so it was time to finish all the things I’d left undone. The biggest one for me was graduating high school. And that’s where I found some other utterly outstanding human beings. One of whom I just lost. Donna Carpenter. She was one of my teachers from the adult high school I attended from the ages of 28 to 30 where I graduated with honours in all my classes, and I do mean full cap and gown graduation, not an equivalency. Of this I am very proud. But I am profoundly more proud to have known Ms. Donna Carpenter.
I stood in awe of her self-assuredness, her self-confidence, her competency. I knew that I was in the presence of a woman who knew her own worth and was at home in the world. I wanted that. When you find someone who has or is what you want, stay with them, spend as much time with them as you can. Learn how they came to be who they are. I spent a great deal more time at the school than was required of me and spending time around Donna was very much a part of that reason. I was too poor to be able to take the bus every day so I walked the forty-five minutes each way. By the time I graduated two years later I had fabulous legs!
What did Donna actually teach me? Too much to list here. I will say that she taught me to believe in my talent as a writer. Whether anyone else thinks I can write the way I have always wanted to or not, I do, and that is enough. She introduced me to the simple pleasure of stuffed grape leaves. Donna was a world traveller and fell in love with stuffed grape leaves in Greece. She has also been to Japan and Venezuela and…forgive me…I forget where else. Many wonderful places. Donna loved Life and living. After the life of fear I led I wanted to be like that, in love with the world, with exploring. When I was a very small child, before my first agoraphobic attack that closed the door to Life for me, I dreamed of working for National Geographic, travelling to remote places and recording the experience for other people so everyone would know what was in the world, missing out on nothing.
It’s another story for another day, but while I was in the adult high school I met a man who was to become my lifetime mate. He happened to be a wilderness canoeist. There are quite a few stories of this agoraphobic being introduced to the true Canadian wilderness.
Raise your hand if you never thought you’d grow up to be like your mother. Raise your other hand if it’s too late. Stomp your feet if that’s both good and bad news. Yeah. Me too. I feel the ground a-shaking, ladies. I’m not going to get into whether it’s good news or bad here. Just some random thoughts and observations. I’ve decided to view the m(other) ‘trip’ as more fascinating than frightening.
Mom’s on my mind a lot right now because it’s Dead Mother Month. I can never remember the actual date of her passing because I wasn’t there when she died so she gets the whole month for remembrance. I was away when she passed and I couldn’t be reached. They tried, pretty darn hard actually. I was in the remote wilderness of Algonquin Park sittin’ on a rock somewheres. My family contacted the park authorities who attempted to track our whereabouts so they could send someone into the Interior of the park to go and get me and tell me my mother was on her death bed in the hospital. Park Rangers have done such a thing before, however, we hadn’t submitted an itinerary because it was so late in the year when we went in that the booth at the entry point was already closed for the season. Later, after the funeral, my dad told me that my mother, surrounded by family, my father and siblings, kept asking for me specifically: “Where’s my Stephie? I want to see Stephie.” Thanks Dad. I could have seriously lived without knowing that. But I’m getting ahead of myself a bit.
Mom died just after Thanksgiving. As I said, I was away. When I got home there were three messages on the phone. All from my father. The first one said that mom had another heart attack and was in the hospital. The second one said that she wasn’t going to make it this time. The third one left the details of the funeral arrangements. You know that saying, “I felt like someone pulled the rug out from under my feet”? When I heard the third message I literally dropped the phone on the ground and was on my way to following it when my parnter caught me and held me up. I felt as though someone had pulled the entire earth from under my feet. I gasped and said, “My mother is no longer on this earth with me!” Sounds dramatic as hell, doesn’t it? Sounds like that to me too. I didn’t think the words. They just came out of my mouth. Out of my heart. My awareness. We were separated, my mother and I, we couldn’t be together anymore for many reasons, but until then she was still “there”. I could and did occasionally call her and talk to her. Rarely, but I did. I loved her, but I couldn’t be with her.
I got the phone message just in time for us to rush out, buy black clothes and shoes, and show up for the viewing. I was in shock. So no, the actual date didn’t register. I didn’t think to look at the calendar. Time had stopped for me anyway. Time lost all meaning. I was living in a brand new world. A new Time was beginning. The old calendar was suddenly irrelevant. That was 15 years ago. Every October since then has been “my mother’s month”. Whether I invite her or not, she comes to live with me, to walk through my dreams, to sit up with me during many, many sleepless nights and go over old memories, but most of the time during those long nights she spends her time pointing out to me all the ways I have become like her. She brings my awareness to the ways I sit like her, hold my hands like her, read the books she would have liked, eat food she would have liked, spend my time the way she would have, laugh at the things she would have found funny. She points to my face in the mirror and shows me how my face is beginning to be shaped like hers here and there as hers did at a certain age. She reminds me how her body ached in the same places mine does now. How badly her hips began to hurt if she sat on the soft couch, just the way mine are starting to. How her knee ached if she didn’t put her feet up, like mine does now. She watches the way I fold my hand and rest my face on it and says, “Look…do you see me?
Like my mother, when I don’t have the energy to do the big things on the To Do list I fiddle around doing a bunch of small tasks that make it seem as though I’ve been busy and productive. I do it so I don’t get angry with myself for not being able to do more. I realize now she did it for the same reasons, but she was defensive about it, in the extreme. In the end, all she ever did was piddly shit. Busy work. From a very young age most of the housecleaning was foisted onto me. She did the laundry and the cleaning. I folded the laundry and put it away. She sorted it and put it in the washer and dryer, and much of the time I was called upon to put it in the dryer too. She cooked and served the meals. I cleaned up afterward. She ironed. She sewed sometimes. She baked some. Otherwise, she read and she rested and visited her friend across the street. She didn’t have any hobbies. Somehow, she fooled us into thinking she was “busy” and had “earned” her rests.
I’m all grown up now and I am my mother. Enough so that I understand she really was tired. She had disabilities that weren’t properly treated. I have them and unlike my mother I was willing to say, “I should be able to do more than this at my age. What in the HELL is wrong with me???” and beg for answers and treatment. I tried to hide it, make up excuses, the same way people who can’t read manage to get by, because that’s what I was taught, the example I was shown, and it damned near killed me. I was sick. I wasn’t just “tired”. The exhaustion was a symptom of some very serious disabilities, plural, and I should be ashes by now. We’re talkin’ a long time gone.
Part of the reason I’m still here is because my mother’s life deserves a hearing. She deserves not to be forgotten. More importantly, she deserves to be remembered for the way she was and the way she lived. She deserves to have someone stand up for her now and say “She got screwed. They failed her. They let her fall down and stay down. They made excuses for why she was the way she was instead of fighting to make sure she got help. They were spineless. They didn’t love her enough to fight for her. They took the easy way out for themselves and she had to die to get peace.” I’m not okay with that. She was smart. Wicked smart. Formally educated and perpetually self-educating. Politically interested, bold, and passionate. And for something like 40 years she did nothing every day but laundry, cook, read, and sleep. On Fridays she played cards with friends. The end. Untreated and/or mistreated Chronic fatigue and Bipolar Disorder and Agoraphobia made it impossible for her to manage anything more. A fucking waste and a shame. But not her shame, make no mistake about that. She believed it was her shame to carry. She was ceaselessly ashamed and enraged by her Fate in regards to those things that limited her that she did not understand, and because she did not understand them or their source or physiology, she blamed herself and named it “personal weakness” and “character defect”. I know. She told me. She didn’t believe she could be “fixed”. She gave up on herself. I couldn’t do anything about that. I tried. In the end, I left. I didn’t leave my mother; I left my mother’s rage.
There is no anger in these October visits. Nor sadness. That’s the kind of crap that only foolish mortals drag around with them. There’s some comfort in finding her in myself now in the softer, kinder ways, the benign mannerisms. It is nice to know for certain that she would have a great laugh at so much of what I would be telling her right now. I swear I hear her chuckling sometimes. She did have a sense of humour. I was her confessor. Her confidante. I didn’t know that until after she died when I heard my father and siblings say so often “I didn’t know ‘this’” or “she never said a word about ‘that’” when referring to things mom talked to me about endlessly in detail and depth. She always told me when she was scared or in pain. She is my confidante now. She lived through this constant exhaustion and bouts of depression that make you crawl around the house on your hands and knees looking for a lost give-a-damn so you can get up and do something that matters. She would be the first to offer me heartfelt empathy. The kind of sincere empathy that would be a balm to my soul, maybe even be that give-a-damn to get me off my knees and moving forward in a meaningful way when I need it. To know that I was in chronic pain would break her heart. It did when I was young and had constant migraines. I can still feel her big, strong warm hands massaging my shoulders and scalp. I close my eyes and feel them now. If there’s a heaven, then that is what it feels like when I’m suffering: my mother’s hands when she’s able to show me compassion.
When I talk openly about disabilities, both visible and invisible, what it is like to live with them, how it feels, the impact it has on my daily life, both large and small, I am not complaining, I am campaigning. Believe it. I am campaigning for Disability Awareness, for the persons who live with them now and the ones who are gone but should never be forgotten. The ones who were undiagnosed or misdiagnosed and most especially for those who were mistreated and maltreated. May it end now and never happen again. I am campaigning for Remembrance of family members whose Truths were kept secret “for the sake of the family”, or for that old fashioned and twisted notion – oh please – that “we shouldn’t speak ill of the dead”. To bury the Truth with the dead is to deny they ever existed. There is no greater disrespect than that. As long as I’m alive so my mother will be too, in all that I know of and remember of her wonderfulness and human failings and feelings and love and terror, and I don’t care who that pisses off. When Monkey Hill Creative Arts gives the proceeds to the Creative Arts Spirit Centre, it is to honour and remember my mother, and my daughter, and myself, and everyone like us and to say, “We’re here. And there’s a LOT of us. We are not anomalies. And we shall not be ignored or forgotten, nor shall we go away. We will not be satisfied to be locked away in homes to spend forty years doing laundry, making meals, and waiting to die.”
By the way…do you know what “Home” is? Home is that place where you are welcomed and respected by all, and protected from all others. Never forget that. Welcome to Monkey Hill Creative Arts.
If you don’t mind I’m going to take a minute more to go downstairs to get a bowl of Pralines & Cream ice cream for breakfast. I earned it. I wasn’t going down til the sun came up or this website was alive and breathing. It’s still dark out, though the birds are making some noise, but I hear the sweet breath of life here at Monkey Hill Creative Arts online. I’m an artist, not a techie, so there appears to have been one hell of a struggle between the forces of good, evil, and ever’thing in between at this table. This here was my long dark night of the soul.
Why the rush? My Canadian counterparts won’t be looking this way. It’s our Thanksgiving weekend. Two reasons: I have friends and clients worldwide; and it was long past time to come Home. Being an artist can be a lonely life, and being a disabled artist supremely lonely. My greatest joy as a gallery owner was connecting personally with the patrons and the artists I represented. I miss that interaction. The virtual world is certainly not the same but Twitter has proven how much people crave interaction and that they are willing to connect in whatever ways they can.
I will be finding ways to make Monkey Hill Creative Arts as communication friendly as possible.
‘Kay…gimme a minute to get my hands sticky with some of that ice cream and I’ll think of something else to share.