I was writing an email reply to my cousin, K, and started rambling. I do this frequently with her, as I feel comfortable sharing with her, but at some point the email went beyond a letter and became like an entry in my journal. So I decided to send her the first part and then post it here (deleting the more mundane bits) and continue writing until I was done. It's a good thing too, I'm not sure how receptive anyone would be to the length and content and style in an email-type format.
I know what you are saying about being connected in the bigger picture, but I don't think you quite get the extremeness of my aloneness. You have had Kn, you have had jobs that put you around people, even when you didn't seem to have many friends. For me, it is different. My few friends here and my mom are really my only lifeline. It is hard to explain exactly how much one loses without any physical proximity to familiar people. It is a negative concept, and has negative effects. Physical contact has healing properties, but usually all I get is snuggling with my dog and the occasional (like, on average, less than one time a week) hug from my mom or a friend. To lose even one friend at this time for me could really knock me out. Especially now that I'm re-discovering my natural extroversion, it is so much more difficult to just be alone. All I want is company I can relax around. Spending time beading with N has been perfect. Unfortunately that hasn't happened in awhile.
My point was that the isolation I'm afraid of is more or less total isolation, not just the possibility of losing a few friends, but my whole, thin, fragile support system here. I barely survive on the amount of contact I am getting now. When you are used to having someone around all the time, you sometimes don't realize how much it matters just to have another human being in the room with you. I'm facing losing that altogether. And when I have a spiritual life, I feel the need to share my experiences with someone even more. The thought of having such experiences and having no one to share them with is almost more than I can bear. I know what it is like, I have been through it before, during other periods when I was concentrating a lot on my spirituality. I felt connected to the universe, but disconnected from anything or anyone in particular. You need both to really be healthy and happy. Well, I need both, anyway.
But, this is a really big deal that I've uncovered the real reason for my procrastination and self-defeating behaviours, and I can take hope that at least I've brought it into consciousness now. I just have to be careful. My therapist suggested I work on balancing spirituality with the things that make it possible for me to connect with my friends. That is good advice. It's hard for me, I've always been and all-or-nothing person, always doing things in the extreme.
I know that in order to change yourself in a big way, you have to deconstruct yourself, or get blown apart. One way or another, you need your identity to be much looser and open in order to create a new structure. In therapy, that can happen gradually, as an unpeeling (the "onion" metaphor); it can happen in fits and starts; or occaisionally you can get blown open. Life itself seems more likely to blow you apart than to unravel you slowly. You know, crises and trauma. Unless you make a concerted effort everyday, it's difficult to control these things on your own. I'm so thankful for my therapist, because even though I've been ripped open a couple of times, she's always been there to mediate it. And weekly I'm still unpeeling. Though there was a lull there in June, in this past week's session I seemed to get back on track. Well, it was more what I did in the previous week - actually think about the issues and the reasons behind what's been going on with me. For most of June I seemed to just stop doing that, and I started to feel like the therapy wasn't working anymore, that I wasn't getting anywhere. I felt like all I was doing in our sessions was complaining about my fatigue and pain. Of course, my therapist said it wasn't complaining, it was expressing my current situation, which is true, but I still felt like talking about that stuff wasn't helping. And worse, it felt like I wasn't connecting with her anymore, like I was talking to a machine. Usually we have quite a nice, thought-provoking discussion, but when I was talking about my difficulties with day to day life, there wasn't much she could say except things like "that sounds so difficult" etc. But I brought it up, that I wasn't feeling connected or heard and we discussed that, which re-connected us.
As time goes by I realize the most valuable part of our talks is the way she validates me. It's a concept you don't think about. I didn't even know what it meant until I met my therapist. I know what being invalidated was like - I've had plenty of experiences of that, especially from my dad - but since I was never validated at all, ever, by either of my parents, I didn't know what it felt like, how essential it is to any kind of self-trust and self-belief, and thus I didn't know just how much I'd lost by not having it. I've also read lately that the most important thing a parent can do for their child is to validate their experience - to accept their emotions and thoughts and give them the sense that they are understood. It's as easy as saying, "you're angry about this; you're sad, aren't you? Me too" etc. It gives the child so much: the sense that what they are feeling is okay, is normal, acceptable. It gives them confidence in their own experience. When a child's emotions are NOT validated, they learn that the way they see themselves is different from the way the parent sees them, and that makes them very alone, insecure, self-doubting. Children's brains can actually forget how to feel certain feelings - the neural pathways for that experience decay to the point they don't exist, and they literally can not feel, say, anger. I think this is why I have such difficulty with anger. The neural pathways in my brain are just not developed and connected enough for me to make mature sense of the feeling. I mean, I feel it, but it is always highly mixed up with other emotions - this is not the same as having multiple emotions about the same thing. I really think my brain tries to use the pathways for other emotions to identify anger. I can't explain it any other way.
Anyway, my therapist is practically re-parenting me right now. The most important thing she does is validate me, reflect back that she understands and cares. Often it is difficult for me to believe that she really does care, but mostly I think she does. It is so hard for me to receive real care from anyone. I think the neural pathways for that really aren't there at all, and I'm starting from scratch. So maybe one day they will be developed enough that if I get into a close relationship with a man, I can actually feel loved, without feeling like I have to earn it or prove my worthiness for it or manipulate the situation so it/he won't go away. There's a tiny tiny bit hope where I was completely confounded before - I've avoided relationships for years because I've known on some level that nothing there had changed, it was going to suffer the same fate as all my previous ones.
I have made a little effort to enjoy the weather occasionally. My mom and I have been geocaching a little bit, so far it has been frustrating, we have difficulty finding the caches, and the terrain, though supposedly quite "easy" according to the cache listings, has been hard for me with my extra fatigue. Walking in the woods on uneven ground and up hills is very tiring for me. We are looking for more urban-types of caches that don't require as much of a hike. Last week my mom invited me over for a swim, and then we sat on her porch for a bit in her new lounge chairs - they are multi-level recliners, well-cushioned and so comfortable! Unfortunately I can't go over there much anymore because of the whole B thing. Apparently T thinks I have a problem with her because I don't come to the family functions, even though she knows it's about B. I told my mom to tell her again it's not her. She's invited us all to her house to celebrate birthdays - mine, mom's, B's and S's are all in the same 3 days. T even offered to make me a birthday cake in any design I chose, which I'd love, but I'm not going. When I was talking to my mom about this, she thought it was just that I wouldn't come to her house when he was there, and I had to re-iterate that I wasn't going to be around him AT ALL, it didn't matter where we were. The only exception is our extended family gathering because I want to see my cousins, aunts, uncles and grandparents, and its MY family. If anything, HE's the one who shouldn't come to those. But whatever. I don't even notice him being there most of the time because there is enough other people to talk to that often enough I don't hear him being his immature, attention-grabbing self. Once I move to Toronto, I won't even have to suck it up to get rides from them to Grandma's house. Right? I can come with you? or K and N :) Anyway what I meant to say was that when I was talking to my mom about it I felt like I was just being stubborn and that I didn't really have strong enough reasons for avoiding him like the plague. But I have to remind myself that, actually, my reasons are the same as they ever were, nothing has changed, HE hasn't changed.
[This is where I cut the email off and referred my cousin to this blog entry]
And the truth is, my brother and his family, and to a lesser extent, T and her kids, always make me feel bad about myself. I can't fully explain why. They're just so normal. Also, sometimes I think my mother doesn't need me, she's got a new daughter - T calls her to talk about her problems, asks her for favours...T's kids might as well be blood-relatives. She's proud of her son, delighted with her grandchildren...I can't help thinking I must be a glaring sore-spot on her perfect, perfectly normal life. It's weird how okay I can be with myself and my situation until I think about how she might see me; how I compare to her other "kids". I know it's immature and selfish but sometimes I resent T for her relationship with my mother. She has her own mother, why is she stealing time from mine, time she could be spending with me? I have to settle for the scraps of her left-over free time. Spending time with me seems to be the lowest on her list of priorities. That hurts me more than it should, because it is constantly pouring salt into the wound of growing up that way. She never had time. She never made time. She never took pleasure in spending time with her kids. Isn't that WHY you have a family? Why else would you have a family? That is not a rhetorical question.
I'm still not able to let this go, my childhood, the emotional neglect. I was watching the US Track and Field Olympic Trials and they profiled this runner who said that in grade four he started telling his mom he was going to be in the Olympics, and that she always said, "Of course you are!" He said she never doubted it, she never told him, no you can't do that, that's not for our type of people (he's black too, which makes this even more nice, since she must have grown up feeling the limits of racism herself). When I heard that I just got so sad. I told my therapist about it too. I said, "I know what's inside me, imagine what I could have been if I'd only had some validation and encouragement." I'm not saying I wouldn't have had problems or anything, I mean, who knows. But self-belief is SUCH a huge deal. I would have been able to GO for the things I wanted, to see them through, to have faith that I could do it, if I had had support. If I had had someone behind me. That book I've been reading says that children who aren't validated enough don't have the ability to figure out what THEY want because they are so busy trying to live up to the image they think their parent(s) have of them. They are too busy trying to figure out what is expected of them, who they are expected to be, and to live up to those expectations. This so applies to me. It took me thirty-odd years to figure out even vaguely what I want, but I still don't have the courage to go after it. I'm still looking to find out what's expected, even though now I am too sick to come close to living up to it, even though I know that's what made me sick in the first place - the effort and stress of continuing to completely squash my real self the way my parents taught me to. Even now I have an obsession with needing to know what's expected, what's "acceptable" in a life, according to my mother/superego/society; I need to know this in order to feel safe, because even though I can't and won't live up to it, I have to know how far I'm deviating from it in order not to stray too far. All this diverts my energy from accomplishing what I want. As I've often said to my therapist, I'm afraid if I lose track of this "standard", I'll go over the edge completely and no one will be able to relate to/understand me. I'll become eccentric and totally alone. Which returns us full-circle to the fear I spoke of earlier. This is more or less an elaborated analysis of that situation.
You are so lucky, K, to have Kn standing behind you, supporting you in whatever you decide you want, encouraging you to really be YOU. I know you know how lucky you are. I'm so envious that you have that. I SO need that in my life. My therapist is great, and an hour a week gives me courage to stick my toe in the water every so often, but not enough courage to jump in, or even walk in (in the interest of balance...). I hope this metaphor makes sense! I just mean I have enough courage, with her help, to overcome the fear-based procrastination just a little now and then - to take a tiny risk by starting a jewelry project that I'm not sure will turn out; make a doctor's appointment even though I feel like he's too busy to see me -
[On that note, a tangent - I actually had an anxiety attack when I went to see my family doctor last week - so unexpected and unusual these days. I could barely breathe, barely kept myself sitting in the waiting room. Everything was getting to me, the loud breathing of the man a couple of chairs away from me, the "aura" of the pharmaceutical salesman as he came in and waited to speak to the secretary - I actually got up and moved to a chair far away from him because I couldn't stand him hovering near me, he gave off such a self-important air, it was stifling. On top of that, my back pain worsened ten-fold as soon as I arrived, and sitting up straight in my chair made me so nauseous, I couldn't even read the magazine or play the sudoku game I had to try to distract myself from the room. So I sat there, trying to ground myself with my feet flat on the floor, breathing deliberately. I asked myself what the increase in pain in my back was about. I'm not sure if I've told you before, but when I first started therapy with my therapist I made contact with it and discovered it was rage - the rage I now know I have no brain circuitry to experience it with - and there, in the doctor's office, it seemed to me that rage was being triggered by being there. [this is about where I stopped writing to my cousin and started writing "journal style"] Was I so enraged with my doctor's inability to help me? Or the fact that in that office that I'd been going to my whole life, I always felt rushed, like my doctor was in a hurry to get rid of me, that I was unwanted, uncared for...My old doctor certainly rushed through everything, he even talked really fast. Dr. K, who took over the old doctor's patients and practice when he retired, is decidedly different when you are in the room with him - he listens, respects my opinion and knowledge, shows that he's human and has a sense of humour. He took the time to help me immensely with my disability appeals, and I am grateful for that. I do like him as a person. That said, the same secretary works there as always, and she always has at least 3 lines going on the phone, and always seems in a rush. She is friendly enough and amiable and efficient. But I hate calling her to schedule appointments and renew prescriptions because I know she's itching to get to the next call. There are signs posted in every exam room that ask that you only discuss one health issue at a time with the doctor - to make seperate appointments for each problem. The doctor's office is busy busy busy. The doctor himself is not dismissive, but everything else about the place is, including all of my memories of my previous doctor. I am always reluctant to make an appointment, because I feel like I am causing a problem. That I'm contributing to the doctor's hurriedness and stress. Even that I don't deserve his time. All of which is ridiculous, because I have legitimate health issues and that is his job, his chosen profession. That kind of reasoning does little to allay my anxieties. It's as if when I'm there, I'm primed to be rejected, waiting for the straw that will break my back. Like I've provoked an abusive person, but didn't have a choice because I needed something from him. Actually this is the same feeling I sometimes get (used to get a lot more often) when I speak to my father without knowing what kind of mood he is in. I'm terrified he's in a bad mood and is going to verbally slam me down. I have the image of my eyes blinking in anticipation of something flying into my face, of wincing and bracing, waiting for the blow. There's never been an actual physical blow, but it is the same feeling, the same reaction, the same result. But bruises in the mind last a lot longer than bruises on the body, or even a broken bone, sometimes. So, I'm in the doctor's office, the waiting room, trying hard just to breathe because I feel like I'm suffocating; even though I'm breathing, I feel like the cells of my lungs aren't absorbing any oxygen, which is nauseating like motion-sickness. Sitting up in a hard, straight-backed chair, which is the most uncomfortable position for me when my back hurts, it makes me weak, sweaty, nauseous, fidgety, unbearable. And I'm realizing the rage. It's about the way this office makes me feel, how dare they make me feel like I don't deserve medical care? And it's also about the futility I feel in asking for medical care. The doctors don't know anything I haven't already found on the internet, about fibromyalgia or any other health problem I ponder. The rage is in knowing there is no real help here, here in this place we are taught to rely on for our lives. We are supposed to hold this place high, to respect it, to trust it, to defer to it, to go to it for answers. But this places doesn't have any answers for me. All it has is a prescription pad, and I dictate the medications I want. I am grateful this doctor doesn't question or deny the medications I ask for. He doesn't make me feel defensive or stupid. It's like he acknowledges I know as much as he does, that all I'm lacking is that degree on the wall that gives him the authority to approve or deny what chemicals I can put in my own body. All of this is what my rage is about, here, in this place. I left with a fistful of prescriptions and the impression that we both knew he might as well give me a pre-signed prescription pad so I could fill out my own and not have to "bother" him. Forgetting about however much money he makes for having me actually come to the office.
My rage at home is also about futility, and my wasted life. All the time wasted being squashed, and then squashing myself until the squashing was most of who I am. And all the time I'm wasting now undoing the damage, unfolding and inflating, ironing and restructuring. And the damn poignancy of "what could have been", because it DOES matter in my life. It's not something I've whiled away by my own folly, it's been stolen from me.]
- even to turn of the television and deal with the silence, pick up a book instead, takes courage. In the silence, I have to face myself, and I'm never quite sure what I'm going to find. Will I find myself devastatingly lonely? Or succumbing to a barrage of self-criticism for not turning the t.v. off earlier and attending to taking care of myself (apartment, errands, chores, getting outside etc.) Sometimes I find I am at peace with the silence, without the preparation that is usually necessary. Transitions from mindlessness to mindfulness are often difficult for me. There's usually a surge of guilt and remorse.
Well, I guess a toe in the water is a first step. I'm starting to feel I may soon have the courage to put a foot in - get out the knitting machine, start sewing, meditating, swimming, doing yoga, cooking. There is so much fear about these things. Can it all be the fear of being alone? On the surface, it doesn't make much sense, when I look at the list of activities I've just made. Where is the risk, I should be asking, a take on the "Where's the fear?" question that is sometimes helpful in therapy. Ruining something. No, becoming obsessed and going extreme. Forgetting to balance, letting the novelty take over. It can happen to me, has happened to me repeatedly - my first computer, learning how to make webpages, Kingdom Hearts, even knitting at times. These dips into obsession last weeks, two at least, where I stop eating, sleeping, stop everything, really, not wanting to take breaks, not wanting to come up for air, look around, go outside to see the sky. It always has negative consequences - I made myself so weak I fainted after one episode. I sometimes think it's hypomania. That most extreme time it probably was. Luckily, with Kingdom Hearts, having a social life saved me by forcing enjoyable breaks on me. But even lately, I've been going there with beading.
That, and the whole sleeping/not sleeping thing I've been doing the past couple weeks. It's like I'm on 36 hour days. I'll stay up far too long, then sleep over 15 hours to catch up. I discussed this with my therapist - when I'm awake, I don't want to go to sleep, when I'm asleep I don't want to wake up. My dream-world is like another life to me when I sleep so long. It is difficult to make the transition from one to the other, lately it's been impossible to do it every 12-16 hours. When you got to sleep, it's like you die to your waking life. There's an uncertainty that when you wake up it's going to be the same life, that it's going to be there at all, that you're even going to wake up at all. To go to sleep, I almost have to be ready to die, to let go of my life forever. So I stay awake until I'm so tired I can't care so much about the possibility of not waking up. And when I'm asleep, though my dreams are sometimes stressful, they are more exciting and hold more opportunities than my regular life. I gave my therapist the example of the dream I had on Tuesday night - I was already part-way into a new relationship. I was able to have the experience of feeling liked if not loved, feeling the excitement and happiness of becoming close to someone. In my dreams I'm always with people, usually three or more for at least part of the dream - in my waking life I am usually alone. In dreams I'm able to have a houseful of animals - in waking life I am crowded by and limited to two. The possibilities in dreams are endless, sometimes I can fly, and I am never disabled, or overweight. Not that I dream that I am thin (with a few exceptions), but my body is never an issue. I am capable of doing anything a healthy person can do. Then I wake up, and my limitations hit me before I even open my eyes. The pain, the heaviness, the enormous amount of energy it takes to get me to the end of the loft bed and down the ladder. And these days I seem to be bumping into and noting more limitations, more incapabilities than I've noticed since I became ill.
The progression of my illness might help explain this. I first noticed the pain starting in February 2003, and by July and August I could not even sit in a chair. Somedays I couldn't walk my dog - it took everything I had to get her out for a pee, and I was in great pain. I spent my days lying inclined on the couch knitting and watching television. My doctor wouldn't prescribe anything stronger than Tylenol 3's with codeine. Physiotherapy offered very very short-lived relief - by the time I got home from the clinic I was excruciating again. In September I started to see a chiropracter, and that gave me the ability to manage university while still on the T3's. Since then, up until this spring, my pain levels have pretty much been constant, but I'm now taking much much stronger medicine. This spring I've been overcome with fatigue - a symptom I never had too much difficulty with. The fatigue is complicated by my use of dexedrine - I was taking it too often, and once I stopped, I was incredibly exhausted - rebound effect? Burn out that was masked by the drug? I use it very infrequently, and am much more careful to do less physically in a day than I used to. The pain started to increase at this point in time as well. Am I just getting habituated to the amount of pain-killers I'm taking? Is my body needing exercise, or is it already too stressed? That last is not a question most people ever need to ask themselves, they just feel one way or the other. It's a paradoxical question. How can the answer be unclear? That is fibromyalgia/CMS for you. You are supposed to exercise, but only if you are getting good quality sleep. I never get good quality sleep, for even if I sleep more hours than anyone I know, the extra hours, and most of the other ones, are spent dreaming intensely, sweating, with my body rigid and straining, not in the deep sleep I need to repair my body from daily stresses, let alone exercise. And that is how exercise works - it causes microscopic tears in the muscle tissue, and at night your body optimally repairs them stronger than they were before. As far as I can tell from my experience and the research I've done, I don't stay in deep sleep consistently enough for my body to repair my muscles. I don't think I'm even reaching an equilibrium in repairing the stresses my body goes through during a day without exercise. I'm always holding, tensing, bracing. For someone who doesn't exercise, I have very strong muscles, because they are almost always working. I only relax when I make a conscious, sustained, fully-attentive effort. So, I mean, I am embarking on a year of yoga and meditation, mindfulness and invoking the relaxation response in my 35th year, a little over a month away. Hopefully eventually I will have trained my body how to relax without having to think about it all the time. Until then, it may sound like an excuse, and maybe I should get my sleeping habits in better order, but I don't think any intensity of exercise (by that I mean anything strenuous) is the way to go. (Here I am defending myself against the voices others have planted in my head - no I'm not schizophrenic, I've internalized "doctor's orders" and the lists of fibromyalgia "helpers" that always push exercise - that make me feel like I'm doing something wrong by listening to my intuition and my body insted of the "expert" advice - how can someone else be an expert on a different individual's bodily experience of an illness that has no physiological markers, an illness that nobody knows the cause of, the cure for, which is basically a bundle of varying symptoms under a label - especially when the doctors who have diagnosed me can't even agree on that label - is it fibromyalgia? or chronic myofascial pain syndrome, what Dr. Saul calls "localized fibromyalgia", probably just to make me feel better.) I will still walk. I will continue stretching. I will do gentle yoga, and stop the moment it becomes strenuous. I would like to swim, but no matter how easy I go in the pool, the result is always more or less complete energy completion for at least the next 36 hours.
And the pain is spreading. My legs are often in pain now, and for some reason, that pain is far worse than my back pain. Mostly because it can't be relieved by shifting positions, lying down, propping with pillows, not with anything except sometimes sitting in a hot bath. But I can't spend entire days in the tub. Ironically, lying in there winds up hurting my back. The leg pain is different, it's not searing or burning like the back pain. It's not stabbing or spiking either. It's gnawing, cold. It's like having restless leg syndrome or constant heebie jeebies, with bone-deep ache. Thankfully it is not everyday. I get this kind of pain, more intense and less "heebie jeebie", during my period, but now it seems to be lingering and showing up in between. Now that I have ponstan, which helps with the leg pain during menstruation, maybe I have something to quell it with. I haven't had it since I finished my period a couple days ago, so I haven't had a chance to test that theory.
Oh. And then there are the migraines. I don't want to talk about this anymore, I feel like a hypochondraic and a whiner. I guess I just felt the need to document what is happening, to put it down for posterity, to refer to it later, to have a reference point for future comparisons. It's different seeing my symptoms in black and white than just telling them to my therapist. Describing the pain kind of makes it seem more "real", as in objective. If I can describe it, distinguish it, it proves it exists. Because nobody can see it, nobody else can feel it, sometimes I know people forget that I'm feeling it, I think they probably want to forget and I don't blame them. These details solidify the pain's existence. It's out there in the world now, if only in the abstract. It's there in words if people want to see, if they want to know, if they need proof. This is the only proof I have, other than the state of my body. If you really looked at me, you could see it too, but nobody really looks at anybody anymore. Nobody looks to see what's there, only what they need to categorize you. But that is a whole other issue, and let me just say, not entirely true (nothing is entirely true anyway), and very cynical of me to say.
Signing off finally.
Feeling like if I wanted to I could write a book, a very weird, static, heady book.
Hoping I can come back and get into another writing groove soon, because I feel this has been therapeutic and has given me a stronger sense of myself today.
I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.