I wanted to write about the future because I wanted to know if I could re-discover or re-create one for myself, containing within it, a vision that included the unknowns of the disease I have. I got as far as recognizing that I am living my life primarily in 3 month chunks - now that I am a person with a disease that needs to be monitored and treated. It was about 3 months from the time I learned I had this disease until I learned what it was. From that point on, I go every 3 months for a CT scan and wait to hear if there is progression or not, if treatment is needed or not, if my life will be interrupted or not, if there is bad or good news to know, if there is more waiting or action to be taken.
Because of the progression of this disease is slow, there is much watching and waiting. Then comes a point, and immediate shift, a decision made, that it is time to act. Action, in the form of treatment, is major: surgery or chemotherapy. Each of these, I have done. Each involved 3 months of my life where this was my primary focus. Each has potential to be needed again in the future. In between I wait and I keep busy.
I’d like to believe I am busy because I am living with attention and intention. It is not a new approach to life for me, unveiled by disease. I did feel, at one point on this journey, that I had rediscovered the concept with a new depth, understanding, and sense of freedom. This re-discovery did come out of my experience with disease. This time was wonderful and full. Then, a decision for treatment was made, and I felt knocked out of the place I was in. I lost my way.
I could understand why I felt lost, confused, frustrated, angry. The logic of it was there. The glitch was that I didn’t come back from it the way I expected, back to fullness. So I tried to understand. After putting much effort into understanding what laid behind me, I began to look at what lay ahead of me. That was when the significance of 3 month blocks of time struck me. And I began to see a point, at about 2 years out, where there is almost no sense of myself, no image of myself, no imagining of myself, happening. At that point, where things really started to fade out, I sensed a nothingness - not a nothingness of events, but a nothingness of being. That point of fading felt like fading, because I was not putting myself there. Why?
Fear was my first answer. Fear of maybe not living that long. Fear of making plans that might be disrupted. Fear of the unknown. Fear that I might not have 2 years. Or maybe it would be 5 years, or maybe longer. Time is something I cannot take for granted. I am mortal and how long for, is a very large question that cannot be answered. But this fear was not new, and I while I still, even today, feel the questions it calls out to me, it is a question I have answered already. The only way for me to be mortal, to be a mortal with such an unknown length of time for this life, is to live with attention and intention, as I already knew. This is the only place of peace I have been able to find where I can co-exist with so strong an indeterminate future. My execution and practice of this belief is far from perfect, but it is a belief I can find my way back to when I have lost my way.
I have spent much of the last 6 months feeling very lost, looking deeply into what is was like for me as I was dealing with disease. I needed this self-witnessing practice. I needed the validation. I needed the sense of it as a whole. I needed to tell the story of it, my inside story of it. As I near the end of this practice, I have a sense of having released part of the story to the past. Those particular experiences are over. I am not recovering from surgery now. I am not doing chemotherapy now. I am not withdrawn from my life because I am sick. I am back in the now, and gladly so. I have worked hard and now I am ready to just Be for awhile.
In making room for being, I discovered that I have been so busy with everything, with school, with work, with dealing with disease and being sick, with marriage problems, with actively searching for answers, that I’m not sure what to do with myself. There is empty space in my life and I have to think about how to fill it. I read for an entire day. I go to bed early. I visit friends I haven’t seen in awhile. All this feels wonderful. I begin to remember what it is like not to work so hard and not to carry such a heavy load. I begin to find moments of quiet, moments of peace, moments of rest.
I wanted this so badly, that I sat down one night and made a list of how to remove myself from all my obligations: financial, material, and relationship. It could really be almost as simple as selling everything I can stand to part with (which is actually quite a bit), arranging for a few non-negotiable needs (like health insurance), and waving a temporary goodbye. Trouble was, I didn’t know what I would do next, although something nomadic seemed to be implied. One great flaw appeared in this grand scheme. It was an escape that did not give me the sense of escaping. What seemed to be missing was the vision of me after I dumped all these responsibilities and obligations. Where was I in this picture? Had I known myself so long now in the context of disease, of responsibility, of hard decisions and determined action, that I no longer remembered how to be outside of it? No, because the summer between surgery and chemo, disease was part of my story, and I was not contained by it then. It was when I did chemo that something changed.
It was after I learned they wanted me to do chemo that I started to really disconnect. It was during chemo that I felt like I was losing my life again, and I pushed not to lose it. It was after chemo that I didn’t bounce back like I expected. What was it about this time that had such an impact? I wasn’t sure.
I’d sorted through so many emotions and feelings, worked so hard to re-connect with, and acknowledge what I thought I’d disconnected with. Why was I still in this place that felt so - not me, so mechanical me, so automated me? What the hell was wrong with me? Was I changed so much that I might never find my way back? Had I forgotten who I was? Did I not have something left inside me besides this numb, empty small version of myself? Was I depressed? Contained? Controlling? Afraid? Dissociated? Traumatized? Tired? Where was the joy, the laughter, the twinkle? Were they over-shadowed? Hidden? Gone? Reserved? Protected? Put away? Dried up?
No, not totally.
There were ordinary moments of simple pleasures - smiles, laughter, intriguing conversations, interesting ideas to consider - easy, pleasant, moments. I drew the sense of those small moments to me. It was there, definitely there - that sense of being alive, of being connected, of being tuned in. It was small. It was ordinary. But it was there. Had I not seen it? Had I not been paying attention? I wasn’t sure, but I knew that was what I wanted back.
I had to start somewhere. I thought about those small moments, and what it was about them that made them shine like that for me. Many of them are about people: connecting with people, interacting with people, friendships, family, conversations, laughter, shared ideas, helping. Ah, yes, my beloved relationships.
I need relationship like I need air. I crave it. It doesn’t have to be perfect - balanced, over time, is enough. It is part of who I am, as far back as I can remember. Relationship fills me, rejuvenates me, sustains me. It is not the only thing that sustains me or fills me, but something is created in relationship for me, that I cannot create on my own. Eighty percent of the time, I would choose to share what I am doing, rather than to do it alone. Eighty percent of the time, in dealing with this illness, I have felt isolated.
In the context of disease, the concept of relationship is complicated. There are role changes like patient and caregiver. There are questions, like quality of life and mortality that one can only answer for oneself. There are physical needs to withdraw for rest and recuperate. There is a practicality of how much can be done. There is the difficulty in explaining how you feel, what you fear, what you need. There is need for self-care and attention. For me, this experience had a cumulative isolating effect.
As I look back over the last 5 years, there are other changes that distanced me from the people in my life. My role as a single-mother changed dramatically when my son turned 18 and moved out on his own. I married a man who is not social like me, who is more of a loner. My mother, who had lived close by, moved a half-hour north. We moved a half-hour south. This move also put me farther away from my friends. My close friends at work left their jobs, either because of re-organizations or for personal reasons. Working on my Master’s degree, I am in a program where I do most of my work on my own. All this, I believe, also contributed to my sense of isolation.
No wonder I feel so thirsty for connection in this way. I know this about myself. I don’t know many other people who feel this way as intensely as I do. I’ve wondered at times if there is a skill to being alone that I just never learned, if I might be co-dependent, if I had been hurt at some time in way that made me like this? But, if I trust what I know, and I know this well, this is simply part of who I am. It is. I revel in it. I get great pleasure from it. I thrive within it.
Thriving - I can sense what thriving in relationship feels like. When I remember the times it has been strong - new love, hanging out around the clock day after day with my best friend during high school, family gatherings over the years, my close group of adult women friends, Goddard residencies - I feel the experience of it come alive and wash through me. These senses are not sparks or glimmers. Even in these remembered moments, these senses are a flowing ocean of fresh water after a long journey through the desert.
This vision of a desert is a good one. It is not only a relationship desert I discovered, but one simply of being apart from life. This thirst I have for relationship, I also have for life. I love life. I love being, doing, experiencing, seeing, touching, tasting, watching, thinking, talking, singing. I love feeling alive. There is a child’s wonder in this kind of being, in this part of my being. Life is precious to me in all the ways there are to experience it -the knowing of it, the being of it, the doing of it, the sacredness of it and my sacredness within it. I am not an observer. I know this about myself too. Fresh water ocean number 2.
Desert number 2 - sickness - not disease - the actual state of being sick, like severe rheumatoid arthritis, like surgery recovery, like chemo. Disease I have found a place for. I don’t like that it’s there all the time, but I have a place for that now. The concept of disease does not keep me from my life and, in fact, has challenged me to take a good hard look at what I believe and how I act upon it - how to fashion a life with purpose and meaning.
The ways in which I have been sick have kept from my life, physically, literally - too sick to think or even feel, too sick to move, too sick for energy, too sick like this for months at a time. Bits of free time and reprieve filled with choices between the so many things that were denied - simple chores, visits with family and friends, shopping, motorcycle riding, gardening, writing, and so much more. Little bits and pieces strung together by the threads of what is supposed to be acceptance and re-adjusted practical goals appropriate for the situation.
When I live like that, in that kind of sickness, I am separate from that which is so precious to me, that which fills me up, that which makes life what it is for me. In those times, it is so hard to find, to see, to have energy for. This same kind of sickness is a big part of what makes it also so hard to maintain relationship. It is a sharp forced disconnection from so many things that are so much a part of my being, of my appreciation and awe for life, of what gives my life meaning. It is, for me, like being separate from what being alive is. Sickness steals this away from me in huge chunks, not because I am not paying attention, and not because I am not trying, but because there is a physical reality of what this kind of sickness is like, that denies access to my precious interactive ways of knowing my life and knowing myself.
I hear a voice, as if observing these comments, perhaps even my own voice, saying this sounds like a person without hope, a person who has given up. That would not be true. I would tell you that for some time, I thought I didn’t have the right skills to deal with this kind of sickness and I tried to develop them and that it helped. I would tell you that I thought I needed to learn better how to be alone and I did and that it helped. I would tell you that I found ways to cope, to deal, to wait, to manage and that they helped too.
I would also tell you, that living in that kind of sickness, when it is happening, makes me feel small, dull, and lusterless. It makes me feel disconnected from myself and my ways of knowing. It makes me feel cut-off from the things that fill me up, renew me, heal me. It is a true desert of being for me. I am left thirsty, craving, desperate, vulnerable and needing in ways that are difficult to explain and even harder to find substitutes for.
The statistical potential for this kind of sickness to be a repeated part of my life are high, because of the disease. I think doing chemo made that statistical potential seem real. I felt like I’d recovered and had my life back after surgery, and then, less than a year later, to be sent again back to that desert place - that was too much for me. That IS too much for me. I don’t know what to do with it. I don’t know where to put it, how to feel about it, what to think, or what to do. I will have to figure this out.
The simplest answer seems simply to slip back into joy, now that I have rediscovered a sense and source of it for myself. I would love nothing better than to disappear into my normal life, if there is such a thing. I would love to just soak up the simple essence of being. So I keep remembering, keep adding, keep letting what I can sense wash through me, envelope me, heal me. I try to keep that sense in my immediate sense of presence throughput my body, making it bigger and bigger.
I’d like to say that I have transcended this sense of loss, but I haven’t, at least not yet. Just coming to a point of re-knowing about myself what I have always known, is a release. I am not lost. I am not forgotten. I am not ungraciously needy or hopelessly vulnerable. I am just a water being living in the desert, trying to find ways to survive. I can survive here, even fairly well, but it could never be the same as my precious, precious water. My job now is to trek back to the ocean, while I can, and to stay true enough to myself to trek back every time I have to.
© Copyright 2009. All Rights Reserved.