Day 1 of …

 Posted by at 8:58 pm  2 Responses »
Jan 012012
 

Some years ago, I gave up the folly of making New Year’s Resolutions. It seemed artificial to make a big deal about what was in actuality just another day.

However, isn’t that all they are? Each day is just another day, pregnant with hope that we will find the strength of change within us – for that’s the only place that lasting change comes from. We can hold hopes and desires that someone Beloved will protect us from the chasms and labyrinths of our own minds and hearts. Who doesn’t love being wrapped in love and settled into a safe place to hibernate through the storms?

Sometimes though, we grow up and realize we have to weather the storms, with our Beloved close – no doubt, but the decision to live, to make a change has to be of our own making. It’s a decision I’ve made so many times over the years.

I wrote recently of the loss of someone else’s Beloved. It brings up so many feelings and fears for me – ones that cannot be remedied by prayer or seeking solace in the arms and kind words of my own Beloved, and much Beloved friends. There are fears of facing this life all alone, and then fears of facing this life in love’s company and still feeling all alone.

I find myself battling old fears, old voices that this suffering will never change. That all the work I did, or thought I did, was not enough to save me. Still I drown in feelings of my own making, pain of my own making – but no, I can’t afford to heap blame upon myself at this juncture. This pain just is. The thoughts of going to sleep, hibernating through another year of potential feelings and pain. Through reaching and struggling and never feeling I have quite made it.

I promised myself that I would commit to writing something here every day of this  year, 365 days of excavating feelings and the root pains of my soul. Is it any surprise the thought of doing that fills me with fear and the desire to just go to sleep, to never wake and never have to deal with the difficulty of living.

I know, however, this is something I cannot do. I can only remind myself that things have been better in the past, and will be better again. So I take steps for protection. Adjust medications accordingly, plan for a visit to my counsellor, who I have missed so much, promise myself kindness and rest, and to just deal with each moment as it comes. Such is all any being should aim to do.

Since February of 2011 I have dealt with an ongoing pain in my right kidney. This is different to other pains I have had that are no doubt clear manifestations of the mind-body connection – the pain reflecting the travails of the mind. Yet all the scans have shown nothing, and the prognosis is perhaps tiny kidney stones that can’t be resolved. But after this recent loss of my friend’s Beloved, I no longer trust doctors. I have taken some of the steps to remedy this pain, drinking more water, and yet the pain has not resolved. It waxes and wanes, but never leaves. I no longer can be sure what is real and what is not. Is it Sjogren’s, or is it psychosomatic? Why are there traces of blood? Does it matter? I find the search for the meaning of the pain less important than the prayer for its cessation. And is it any real coincidence that I’ve been told in traditional Chinese medicine, the kidney is the seat of emotions, or the seat of fear, both interchangable in meaning for me?

Perhaps my only cure is to write my way to the source of this pain. I’ll go digging through the garden of my mind, and find the things buried there, feelings and hurts, the things I am supposed to forget, but can’t seem to. As I learn to “weed” the secret garden of my mind, I’ll continue to learn what skills I can of self-love, self-compassion, of being present here, now, with the pain – alone – and with those I love: the Beloved, the wise counsellor, the friends – the teachers that surround me.

Only there lies hope, only there lies the broken path to the future, to the grove in which I need to sit still, and not chase time, but let time come visit me.

All these moving moments, come weave around me, and let me sit still and learn to feel.

Blessings,

Jane

The coming of the sun

 Posted by at 5:30 am  No Responses »
Apr 092009
 

How quickly one forgets! That’s probably a merciful feature built into the human mind – a natural survival instinct – so one forgets how bad it can get. Three days ago spring announced itself in the Cowichan Valley with a clarion call of sunshine at 15 degrees Celcius. Sitting inside in the protection of my home, I could still feel the ultraviolet and sensible heat penetrating my windows, and the accompanying wave of weariness that is a hallmark of my body’s reaction to ultraviolet radiation.

It’s hard to describe chronic fatigue to the uninitiated. You might subscribe that feeling you get from a full day of pleasant exertion in the garden, or a frantic weekend of spring cleaning before the family arrives for a holiday, that feeling of gently aching muscles and nodding sleepiness: an almost smug acknowledgement of a job well done. Chronic fatigue is nothing like that.

There is no feeling of achievement, no feeling of accomplishment within one’s body. There is only the awareness that you had something – energy – and it was taken away. It is hard not to mourn the loss. Like anyone else, you still have that garden to keep up with, that spring cleaning to do, that frantic preparation for the anticipated arrival of a loved one’s visit. What you have, though, is nothing. No self-exhortation, no appeal on high for strength, can bring that essential life force back into your body to animate your flesh. You are decimated, laid low, and there’s no congratulatory victory of a job well done to console you. There’s nothing.

Nothing looks wrong with you. Nobody sees any reason why this terrible defect has arisen in you. No one understands why – with the slightest strength or character of will – you could not forcefully animate your body off the horizontal surface it seems to have melted upon, in a Dali-esque protest at the three-dimensional nature of life. You long, you wish, you rail, but nothing you can do can revive something that is fundamentally “not there” in your body. Energy.

As I glanced outside on Monday at what so many long for – the return of spring – I felt that mysterious quality zapping the very energy from my body. I felt not the approaching season of sun, growth, fun, and socialization. I saw limits creeping in, hiding from the sun of my youth, longings to finish projects passed on for another year, a garden springing into bloom and making hay without me, and me, hiding like some vampirish invalid from the excesses of light and heat.

Strange how soon I can forget what it feels like, when spring arrives, and the realization that once again, life is going to change, until the cooler weather comes back – until the rains come.

Depression was my first port of call – rather strange to understand for those who have been anticipating the return of the sun. How strange to be tossed so low by the very thing that brings so much joy. Surely it’s not my body, but just my mind that is playing this dirty trick on me. It doesn’t take much longer to feel totally drained, devoid of life, to realize that this is a very real, physical phenomenon, and it has begun.

The advantage of those well-worn neural paths of depression is that for a moment, you see an out. You see “not being” as a perfectly natural alternative to the coming struggle. There are no great thoughts of self-violence. I’m too tired already for that. But my brain convinces me of a little fantasy in which I go to sleep and don’t wake up until its raining again.

The world shrinks in, at its most expansive season, and I see that life is going to shrink with it. After two days of exhaustion, I begin to make a new plan. I plan to contract, to shrink with it. This is not giving in or giving up. This is modifying my life to fit the energy available. Projects I’ve had on the shelf for too long need to be gently set sail once and for all, and let go. The list of demands on my time – work, volunteer, and otherwise – that never left that much for me anyway, must also be pared away.

With gentle deliberation, and a care for me that I never gave myself (having somehow not earned it) I begin to make new plans this year. I contract, withdraw, and – being kinder to myself than I can ever remember being – I go to ground, to the cool, underground caves, to wait the return of the rains. At that time, I can rise back up into the world and take my place again, but until then, I will lie in darkness, and wait.

Living with it…

 Posted by at 7:09 pm  3 Responses »
Mar 152009
 

I remember the first time I felt this tired. Not the exact hour, day, or even year, but I remember the quality of it. I was at the sink, preparing vegetables, and I got so tired that I had to sit on a stool, my arms propping me up on the sink. I was about 28 years old. I’d already been sick for five years, with an invisible disease that could not be seen. I had already had enough of doctors for one lifetime, and had perhaps had enough rejection of my condition – and by extension, myself – for more than one. There is something crushing that happens to the mind when a person of integrity is told they are a faker. It seemed my body conspired with the doctors against me in a grand lie, and even when my blood revealed the evidence of disease, it was somehow easier to write it off to a mental defect. And yes, I never admitted to being sound in that regard, however, on the journey, I lost a fundamental truth. The body knows when it is ill, and the mind knows enough to compare the body with disease to that without – to know the difference.

Therefore, it was quite a comfort to visit my rheumatologist last week, and to be told (to the highest certainty that any doctor is prepared to make) that Sjogren’s syndrome is my primary diagnosis, with secondary fibromyalgia. And that Sjogren’s, in and of itself, is enough to fit the picture of my symptoms – the pain, fatigue, etc, that can make daily living a grind at times. It was enough to talk to the doctor and be believed, to be a participant in my treatment, and to realize that, given that respect, I was free to believe myself. Why would anyone fake a disease, only to be scorned, disbelieved, and often told that their suffering was not anywhere like the quality of that of individual X or Y, when an individual Z decided to take it upon themselves to weigh people up and make a comparison.

I know better now than to let myself stay attached to such individuals, when the goal is to negate my experiences, shame me for speaking up, and condemn me to silence. I will not be silent to satisfy them. No more. I suffer. Sometimes the pain is so great that I wish to die to get relief from it, but that is not a solution that will sit easily on my soul, and certainly not on my wife and children, who would be left to pick up the pieces. So it is left to me to find a way to live with this, to seek treatment, but above all, speak.

If my speaking of it tires or bores you, irritates or disturbs you, that is okay. That is your reality, and you are entitled to it. This is mine. You do not have to listen to me speak. You can close the browser window, you can surf to another page. You do not have to pretend to be a friend or even an acquaintance. I release you from the burden.

But for those who suffer in silence, trapped in their homes, behind their computers, in their chairs, in their beds, I will keep speaking.

Yes, I remember the first time I felt so tired. Today, leaning on the sink, preparing the vegetables like I did 14 years ago, I remembered. It seems like it would not take much to make me crumble. But inside, there is a part of my soul so strong, it will prop me up against the ravages of disease. It will make me go on. It will make me seek treatment, and seek an answer. But it will never silence me again.

Sep 142007
 

Suicide is an especially difficult topic for me. I have known three people who lost the battle to depression and successfully ended their lives. I use the word “successfully” ironically. As a survivor, I know there is no victory in losing the fight, and to this day I am still haunted by the lives of these three beautiful, complex people – lives that held so much promise but were lost in the grip of depression.

I have been unearthing old materials about depression that I hosted on the web some ten years ago, deciding that they are still important – perhaps more than ever as so many people, especially teens, lose themselves to the impersonal disillusionment of the age. I mourn each loss and feel it as keenly as if it were the losses of those I was privileged to know for such a short time.

During my research to update these materials, I was heartened to know that there is now a day to recognize and promote Suicide Prevention, and it just passed on September 10. Although I am late, I feel it is still timely to reflect on suicide, on the great hole left by people who commit suicide, and why we should do everything in our power to make sure that it doesn’t happen again.

1991 was a difficult year for me. I had descended into a clinical depression of my own, and had been for some three years already. I was also descending into the early stages of autoimmune disease, activated by a prolonged illness of the previous year. On February 10, Roger, my then husband’s cousin, died after a short battle to save his life after he had taken an overdose of pills. Roger was the epitome of a classic beauty. He had pale, clear skin, and a mass of curly, bronzed hair. He was lean and tall, and his cheeks turned a rosy pink whenever he had to exert himself or be out in the sun, which was often as he was struggling to make a living by mowing lawns. Roger also had chronic fatigue syndrome – then disparagingly dismissed as “yuppie flu”. He also had depression, and I remember visiting him in the hospital and (in hindsight, inconsiderately) commenting on what a depressing place it was. I don’t remember if it was ever publicly acknowledged that he struggled with depression, as it was and is still considered a terrible thing: a mark of weakness. I can only guess at the struggles Roger went through in isolation, before he found what he thought of as the “solution” to his pain. His funeral was held on Valentine’s Day. As it so often is, the funeral was packed with people bemused by the loss of a young man in his early twenties and the “whys” that Roger had fought so hard in isolation to keep to himself because they were not acceptable to society.

Several months later, a young man, also in his early twenties, Neil, committed suicide. As I again received the news by telephone, the loss still affects me to this day. Do I dare answer the phone, to hear more sad tidings like I did so long ago? Neil was a brilliant young man, in fact, he topped the class of students training to become meteorologists the previous year. I was a part of that class, but had to abandon that career as I succumbed to my own physical and mental challenges. I remember before the end of the year, sitting next to Neil at a celebratory lunch of all the students. I felt a little embarrassed because I had totally screwed up a presentation some weeks before, where I had been supposed to coordinate my speech to complement another student’s and Neil’s, and I had messed up so badly in my own fog that I used all the time allotted to Neil’s portion of the presentation. He was gracious about it, and humble, as he was about so many things, including his intelligence. I remember feeling envious of his intelligence. It had once come so easily to me, and had abandoned me as I began to struggle inwardly (and unknowingly) with my past at the age of nineteen. At this lunch, the topic of conversation between us somehow turned to religion. It turned out that Neil was devoutly religious, and at that time I tended towards the atheistic, because I felt I had been cut down and let down by all of my parents, including any heavenly ones. When he learned of my questioning of beliefs, he wanted to talk. Surrounded by the noise of other students chatting about lighter things (things that mattered not to me), and the din of a crowded restaurant, I remember my voice saying to him quietly, “It’s not a good time to talk about it.” He asked if we could talk about it sometime in the future, and I said yes, glad no longer to be the focus of those eyes staring at me earnestly. We never did get to talk about it. I know now that Neil was in the depths of a spiritual crisis, and I still wonder, what if? What if I had talked about it, then and there? Although I know it was not my fault that Neil lost his life to the insidious illness of depression, I still ask myself at times… What if? I’ll never know. I hope I get the chance to have that talk with him one day, in the lives to come.

Two years later, I was admitted to emergency and had my stomach pumped. Coincidentally, it was the eve of St Valentine’s Day, and the anniversary of Roger’s funeral only two years before. This was not the last time I was to be admitted to the hospital with depression, nor the last time I chose what seemed like the only solution to end the pain of my soul. It had been five years since I first descended into depression, and had not known it for what it was. At the time of that hospitalization I still didn’t know what it was. All I knew was that I was defective; I was weak. There was something fundamentally wrong with me. The stigma of suicide and depression was so great that when I later told my mother of that dreadful event, she said “That didn’t happen. You didn’t do that.” And it was never spoken of again. When I told my younger sister, she was angry with me (in retrospect, rightfully so, because who knows better than I what suffering is left behind – how many lives are ripped open and laid to waste?). My confusion in the aftermath of the suicide attempt was multiplied by her anger. I didn’t want to die, but the pain in my soul was so great, that I saw no other solution. Although in time, I was privileged to be tutored by a great psychologist who specialized in cognitive therapy, to this day I still feel echoes of that overwhelming drive to no longer be in pain: mental, physical, spiritual, emotional. I sometimes have to struggle through each day, as I remember the ghosts who now accompany me on the journey.

Claire is a more recent ghost of mine. She was in her forties, and was previously a psychologist until fibromyalgia, depression, and memories of past abuse robbed her of her career. Claire was a great soul. When she smiled, her face creased up and her eyes shone merrily. When she laughed, it was a great, joyous sound – it could correctly be called infectious, because you wanted to smile and laugh along with her. Claire was in great pain. I knew it, as it was something we all shared in our counselling group: sombre memories and ghosts haunting us between the moments that we managed to draw ourselves back to the present, as our leader (another incredible psychologist) found something to make us laugh and find some joy in living. I was suffering an undiagnosed autoimmune disease (one that echoed the hopelessness and helplessness of Roger’s chronic fatigue syndrome). Indeed, not long after I found a name for my physical pain: Sjogren’s syndrome and fibromyalgia, I remember meeting Claire in the washroom before group. She had heard about a lecture on fibromyalgia at the university, and asked if I would attend with her. Once again, I selfishly listened to the demands of the moment, which told me that I was exhausted, and already struggling with the demands of university life and caring for my new family that came with two teen daughters, much less finding the energy to do some extracurricular activity that meant the challenges of negotiating the bus, walking to the venue, and dealing with people who couldn’t see anything wrong with me. I’m sure I politely turned her down. I got the details, in case by some miracle I found the energy to go, and meet her there. I never did find that energy, and I didn’t go. Several months later, soon after the joys of a group gathered at Christmastime (several of us went overboard on the gifts, wanting to – I think – let our new friends how much they were loved and how much we valued finding a place where we belonged), we returned to group in the New Year to hear that Claire had walked into the sea and drowned. This was the same Claire who at Christmas had wandered among the street people of Victoria, listening to them, and hearing their voices. She wanted to do things for them: collect them food and blankets. She wanted to publish a newspaper to give them a voice. I found that old question resurfacing. What if? What if I had made the time, and found the energy, to talk to her, to give her a voice? What if I had found out what difficulty she was in? Again, it was not my fault, but it is hard not to think so. As I attended the celebration at her memorial – an incredibly joyous affair it was with her choir singing in tribute to her – I felt so lost. I would have given anything to have Claire singing along with them, and breaking up in her raucous laugh as if she had gotten away with something (she really could be a mischievous sprite at times). I wanted her to be alive to talk about the conference she was looking forward to, one that discussed the peace she found in walking the labyrinth. What if?

Roger, Neil and Claire, were relative strangers to me. I was only privileged enough to gain a glimpse into their lives, their joys, and their despair at the terrible illness that preyed upon their minds and souls. They were all such beautiful people, with so much to share. So much intelligence, wit, and compassion for their fellow humankind. What a sad and terrible hole their going left in me. I owe it to all of them to educate others about the very real mortal risk of depression. We wouldn’t dismiss those with cancer, or a myriad of other physical complaints. Why then should we dismiss others when the disease is bound up with what is not only seen as physical: the brain, but the mental, emotional and spiritual: the mind?

Roger, Neil and Claire were all strong, beautiful people. I mourn their losses still, and will likely do so the rest of my days. I shall ask myself the “what ifs” of their future lives, and feel the ache of all they could achieve that was never realized. I shall love them and hold them in my memory. They were not weak in their fight with their illness, depression. They were not bad, or spiritually bankrupt people. They had so much to share, if only we had listened. I will not have it said they died in vain. As a survivor who lived, their memory is one of the spurs I use to remind myself when the struggle is great. They would have wanted to keep serving others that way.

To anyone who reads this, who knows of the struggle, I beseech you to keep fighting and don’t give up. There are others who understand, and so many lives that are diminished by your passing. You are loved, and you will find a way to a future in which you can find not only a measure of peace, but the joy you once thought you could never find. Take it from me, who has been there, you will. The first step is asking for help. Don’t be ashamed, don’t be embarrassed. You are not weak, and you have the strength to get through this. Many people feel the way you do right now. Contact someone, and ask for help. A great place to start is at Befrienders International. They know, they care, and they understand. I also have other resources on my Emergency Help page.

Join with me in thanking Roger, Neil and Claire for the lessons they imparted to us. Let’s use this World Suicide Prevention Day, 2007, to make sure that no one else has to suffer and die alone.

Blessings,
Jane

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