WinterSown

I thought I was there, that I had reached the calm point where knowledge and experience were making it easier to handle the endless symptoms that go on 24/7/365. Life goes on, and I had to learn to manage it; water, electrolytes, healthy food, exercise, medicine, self-education, and introspection all combined to help get me to where I am physically and emotionally stronger though attacks. My EP, with a wink in his eye, calls them my neuro-cardio-vaso-vagaly-things. We both then smile because I don’t collapse so much anymore. I began telling myself that I was content. That an ideology of ‘what can I do’ was okay and would quickly replace ‘this is what we’re doing today, and then we can do this tonight and that tomorrow.’ I had already accepted that I could not do most of my old work, and I cut down to what I can manage. The amount of energy or non-foggy thoughts you can crank out does affect your life. But I am lying to myself when I say I’d be doing less in my 60s anyway--didn’t I read that 60 is supposed to be the new 40? If I found acceptance, why am I not enjoying myself? I walk the dogs late at night and speak to the heavens asking them the hows, ways, and means of my life. The answers come through natural shows of clouds parting before a full moon, with so many geese flying across the sky I could feel their wingbeats, the sounds of mockingbirds singing at midnight, the sound of the wind whispering through the trees; I even have been graced with shooting stars. And in all of that, there is no answer for me but to acknowledge that the world is still beautiful after dark. I tried going down to the beach and screaming at the ocean. It does nothing except give you a sore throat and cuts on your feet from the clam shells. I might as well pound sand. Acceptance wasn’t working for me. It’s been something nice to tell doctors and friends who want to hear anything about getting better. I think it makes it easier for them, as most people don’t understand much about dysautonomia, they only know it is bad and want you to get better. And, when you run into them at the store, you smile and say, ‘Oh, I’m doing a lot better.’ But then you’re nearly fainting at the register five minutes later and holding onto the cart handle for support; they don’t see you get through it, go home, and crash on the couch before you can empty your bags. This is unacceptable to me. I want my energy and my life back. I was out in the garden when I made the decision to un-accept acceptance. I made this determination while looking at the state of my garden. Some of the beds have been fallow since my symptoms began four years ago and are looking more like a young forest than the once fertile and well-tended rows of tomatoes, veggies, and herbs. Some of the beds are in transition though, and I was able to prune a few back and get out the weeds before the heat of summer came on. I have partially restored them, and I struggle to keep the weeds out. But the zinnias I sowed are starting to bloom and attract butterflies. Of all of the gardens, there is one bed that I am content with—it’s been cut back, reworked, replanted and sown with wildflowers--it is thriving and growing and blooming. It was these three beds that brought me to my decision—the wild young forest, the in-between bed fighting off weeds while still blooming bright, and the finished bed where the wildflowers are healthy and abundant, bees and butterflies are busy at the blooms, and the weeds don’t have room to sprout and take hold. To me, my own backyard became the symbolic comparison of my struggle and effort to get symptoms under control. The wild and uncontrolled, alongside that which is still in work and can go either way if not kept in check, bordering that which is satisfying and right and good. I made the decision, that while I can, and for as long as I can, I will not be complacent and sit back. I must tend my life as I tend my garden. I know I can control some of it and each time I make a little effort I get more under control. Water, nutrients, and fresh air can make a big difference in how I look and feel too. I am ready to challenge myself to improve; I am not prepared to accept that my life has gone to the weeds. Return to Table of Contents

I thought I was there, that I had reached the calm point where knowledge and experience were making it easier to handle the endless symptoms that go on 24/7/365. Life goes on, and I had to learn to manage it; water, electrolytes, healthy food, exercise, medicine, self-education, and introspection all combined to help get me to where I am physically and emotionally stronger though attacks. My EP, with a wink in his eye, calls them my neuro-cardio-vaso-vagaly-things. We both then smile because I don’t collapse so much anymore. I began telling myself that I was content. That an ideology of ‘what can I do’ was okay and would quickly replace ‘this is what we’re doing today, and then we can do this tonight and that tomorrow.’ I had already accepted that I could not do most of my old work, and I cut down to what I can manage. The amount of energy or non-foggy thoughts you can crank out does affect your life. But I am lying to myself when I say I’d be doing less in my 60s anyway--didn’t I read that 60 is supposed to be the new 40? If I found acceptance, why am I not enjoying myself? I walk the dogs late at night and speak to the heavens asking them the hows, ways, and means of my life. The answers come through natural shows of clouds parting before a full moon, with so many geese flying across the sky I could feel their wingbeats, the sounds of mockingbirds singing at midnight, the sound of the wind whispering through the trees; I even have been graced with shooting stars. And in all of that, there is no answer for me but to acknowledge that the world is still beautiful after dark. I tried going down to the beach and screaming at the ocean. It does nothing except give you a sore throat and cuts on your feet from the clam shells. I might as well pound sand. Acceptance wasn’t working for me. It’s been something nice to tell doctors and friends who want to hear anything about getting better. I think it makes it easier for them, as most people don’t understand much about dysautonomia, they only know it is bad and want you to get better. And, when you run into them at the store, you smile and say, ‘Oh, I’m doing a lot better.’ But then you’re nearly fainting at the register five minutes later and holding onto the cart handle for support; they don’t see you get through it, go home, and crash on the couch before you can empty your bags. This is unacceptable to me. I want my energy and my life back. I was out in the garden when I made the decision to un-accept acceptance. I made this determination while looking at the state of my garden. Some of the beds have been fallow since my symptoms began four years ago and are looking more like a young forest than the once fertile and well-tended rows of tomatoes, veggies, and herbs. Some of the beds are in transition though, and I was able to prune a few back and get out the weeds before the heat of summer came on. I have partially restored them, and I struggle to keep the weeds out. But the zinnias I sowed are starting to bloom and attract butterflies. Of all of the gardens, there is one bed that I am content with—it’s been cut back, reworked, replanted and sown with wildflowers--it is thriving and growing and blooming. It was these three beds that brought me to my decision—the wild young forest, the in-between bed fighting off weeds while still blooming bright, and the finished bed where the wildflowers are healthy and abundant, bees and butterflies are busy at the blooms, and the weeds don’t have room to sprout and take hold. To me, my own backyard became the symbolic comparison of my struggle and effort to get symptoms under control. The wild and uncontrolled, alongside that which is still in work and can go either way if not kept in check, bordering that which is satisfying and right and good. I made the decision, that while I can, and for as long as I can, I will not be complacent and sit back. I must tend my life as I tend my garden. I know I can control some of it and each time I make a little effort I get more under control. Water, nutrients, and fresh air can make a big difference in how I look and feel too. I am ready to challenge myself to improve; I am not prepared to accept that my life has gone to the weeds. Return to Table of Contents