Tomorrow is my birthday. Tuesday, that is. I know it's technically Monday right now where I'm at, but I've been awake for a few hours after another few hours sleeping, only a short nap, so it still feels like Sunday to me. Ah, who am I kidding? The days don't "feel" like anything to me anymore. I don't have a regular enough sleep/wake cycle for that. It's all one long day, punctuated by naps long or short.
On Tuesday I turn 28. I can't help but take stock, think about the passage of time and how much I may or may not have left. When I was in high school (during one of my several sophomore/junior years) I attended a prayer breakfast where the keynote speaker was the father of Rachel Joy Scott, the first student to die in the Columbine shootings. His story of Rachel's life touched me deeply, and it also lit a fire inside me that I've never really been able to explain. You see, she had this purpose and direction to her life that makes me ache for something similar, and even though she died quite young, she still left an indelible mark on the world around her with her kindness, her inclusiveness, and her determination to make the little universe she inhabited a better place. The best part is that she did. She knew somehow that she was going to die young, that year that she was shot. She wrote in her journal some time previous that "this is my last year on earth, I have learned what I can" or something to that effect. (I'm going off of a ten year old memory, so it's not exact.) And now that I'm facing the accomplishment of year number 28, it astonishes me because I always felt that I was going to die young, too. I never really expected to reach thirty. I suppose it's because I've spent so much of my life focused on immediate survival, which was the only way to make it through the trauma of the first decade and a half, but the dreams of the future always seemed unreal and hazy, not concrete at all.
When I look back, though, I am very happy with what I've accomplished, particularly knowing now that I was fighting against Ehlers-Danlos the whole time, and some of the other stuff like adrenal fatigue and food allergies as I got into my teens. I've had some grand adventures in my time. I feel particularly fond of my Idaho adventures. They were the ones most closely aligned with my most closely held daydreams of adult life. Have I ever mentioned that one of my most passionate wishes as a girl was to grow up and join an Amish community? The rustic, living off of the land "survival" lifestyle holds a deep, deep appeal for me, and living on the premises of Summer Hill Farm away up in the mountains was a dream come true in a lot of ways. I only wish that I could have stayed longer, or gone up there sooner. The timing worked out, though, to be for the best. I could not live up to the rigors of country life in my current state of disability, so it's best that I moved back to a soft city life before it got too bad! ;-)
I do feel a sorrow, though, for the life that I will not get to live. Chronic illness and intractable pain have changed my life irrevocably, and there is a deep sadness that comes with that certainty. Granted, I'm the most comfortable that I've been in years, now that I have the proper balance and dosage of pain medications, but the thought of years and years of this is… daunting. To say the least. I feel like I'm constantly dancing on the edge of a chasm, and if just one little thing goes wrong anywhere in the chain of events, I will topple over the edge and be broken on the jagged rocks below. If something happens to the manufacturing or delivery of the pain medication, I'm doomed. If the pharmacy has troubles with stocking (like they have the past 6 months), I have nowhere to turn. I tried getting my meds filled at a different pharmacy, but they all turned me away because my needs were too great. If I can't get the hundreds of dollars necessary each month to buy the meds… I'm toast. So it's not just the thought of the huge drifts of pain that will accumulate through the years, but the stress of not knowing, each and every month, until I'm rolling out the pharmacy door with meds in hand, that seems the most unbearable. It's a really doomy, gloomy thought, so I try to not think about it much. Sorrow? Check. Stress? Double check. Moving on.
I read a really interesting sci-fi book a few days ago called "Factoring Humanity" by Robert J. Sawyer. I don't wanna give away spoilers, but one of the premises of the book is that humanity isn't a bunch of individuals on a spinning rock, totally unconnected from each other, neither is the information gathered over a lifetime lost when an individual dies. Rather, humanity is all connected to one another through what the book terms the "over mind", a collection of the consciousness and information of every human mind that has ever existed. The information isn't lost at death, but rather "uploaded" and saved, like backing up your computer data, and the book goes over the story of how the over mind is realized and explored by a few humans at first, using the information sent to Earth by intelligent life on Alpha Centauri over a period of ten years via radio signals. I know it's just a fictional book, but it really does give me a framework for understanding the world around me that really appeals to me and just makes a lot of sense in some ways. It's given me much to think about, in any event.
That brings me back to the idea of "making a mark" on the world around me, though. Discount the idea of the over mind and just focus in on the thought that when a person dies a shadow of them lives on in a way through the memories of the people they interacted with. I would really like to be able to say that my interactions with the people around me left them happy and better able to cope with the harsh realities of life, you know? Because life is hard. Really hard. Anyone who says differently is selling something. Hehehehe. (Princess Bride reference, in case you didn't catch that.) We all know at least one person who is definitely not a delight to be around, and who seems to just make everything a bit harder to bear; someone who sucks the energy and life from those around them and either doesn't know or doesn't care. I don't want to be that person. Even if I have excuses that seem valid, I do NOT want to be that person. My young life was ruled by a tyrant of that sort, and I know how miserable it can be under their thumb. I absolutely refuse to do that to anyone else if I can help it. I think I've done a pretty decent job of avoiding that pitfall, even with my new neediness that came with the nosedive of my health. Perhaps my "mark" is simply that I made some people happy some of the time, made their lives a bit easier, even? I mean, in a first world world, what else is there?
So I'm turning 28. My husband will be 30 next month. I remember the days when 30 seemed so old! My girlfriend is even older than my husband, if you can believe that. Age never really mattered much to me as much as personal maturity, although I do tend to have a thing for older men. Daddy issues, most likely. I'll own that. lol. So I guess that's it. Just some musings on my life and what I hope I'm doing with it. At this point I don't feel like there's much I can achieve anymore beyond interpersonal goals. I'm just too damn tired. Somehow, I have to make peace with my multitude of dreams and my achy, sleepy reality. I have been doing "better" the past couple months, though. I'm starting to feel like myself again, really and truly. An altered version, no doubt, but no one stays a static version of themselves forever anyway. I'd be altered no matter what.
I've started going for walks again, though, and I get out of the house twice a week regularly, once for grocery run with Corey and once for coffee date with Saka. I've even stopped throwing up all the time, thanks to a lovely med they give chemo patients! I have to take it consistently, though, or else the nausea sneaks up on me really fast and I find myself on the couch clutching my vomit bowl within a span of ten minutes from feeling fine. Gotta keep it in my system. I can't help but laugh sometimes at how different my every day life is from what I'd ever imagined it being!
No artsy cafes or guitar in the park, no challenging classes out at the college with a yoga session afterwards.
No five mile walks in the muggy warmth of a summer's night.
No swell of a pregnant belly.
No certificates of continuing education, no job, no paycheck.
No numbers in my savings account.
No trip to Europe, touring art and culture and food.
There are losses, to be sure. I gotta quit that or I'll start crying. But hey, everyone has losses, and everyone has gains, too. I know I'm better off than I was a year ago, and for that I'm very thankful. Here's to another year of, um… tea and Netflix! Yeah! And a circle of good people who love me very much. That's always a good one.
On Tuesday I turn 28. I can't help but take stock, think about the passage of time and how much I may or may not have left. When I was in high school (during one of my several sophomore/junior years) I attended a prayer breakfast where the keynote speaker was the father of Rachel Joy Scott, the first student to die in the Columbine shootings. His story of Rachel's life touched me deeply, and it also lit a fire inside me that I've never really been able to explain. You see, she had this purpose and direction to her life that makes me ache for something similar, and even though she died quite young, she still left an indelible mark on the world around her with her kindness, her inclusiveness, and her determination to make the little universe she inhabited a better place. The best part is that she did. She knew somehow that she was going to die young, that year that she was shot. She wrote in her journal some time previous that "this is my last year on earth, I have learned what I can" or something to that effect. (I'm going off of a ten year old memory, so it's not exact.) And now that I'm facing the accomplishment of year number 28, it astonishes me because I always felt that I was going to die young, too. I never really expected to reach thirty. I suppose it's because I've spent so much of my life focused on immediate survival, which was the only way to make it through the trauma of the first decade and a half, but the dreams of the future always seemed unreal and hazy, not concrete at all.
When I look back, though, I am very happy with what I've accomplished, particularly knowing now that I was fighting against Ehlers-Danlos the whole time, and some of the other stuff like adrenal fatigue and food allergies as I got into my teens. I've had some grand adventures in my time. I feel particularly fond of my Idaho adventures. They were the ones most closely aligned with my most closely held daydreams of adult life. Have I ever mentioned that one of my most passionate wishes as a girl was to grow up and join an Amish community? The rustic, living off of the land "survival" lifestyle holds a deep, deep appeal for me, and living on the premises of Summer Hill Farm away up in the mountains was a dream come true in a lot of ways. I only wish that I could have stayed longer, or gone up there sooner. The timing worked out, though, to be for the best. I could not live up to the rigors of country life in my current state of disability, so it's best that I moved back to a soft city life before it got too bad! ;-)
I do feel a sorrow, though, for the life that I will not get to live. Chronic illness and intractable pain have changed my life irrevocably, and there is a deep sadness that comes with that certainty. Granted, I'm the most comfortable that I've been in years, now that I have the proper balance and dosage of pain medications, but the thought of years and years of this is… daunting. To say the least. I feel like I'm constantly dancing on the edge of a chasm, and if just one little thing goes wrong anywhere in the chain of events, I will topple over the edge and be broken on the jagged rocks below. If something happens to the manufacturing or delivery of the pain medication, I'm doomed. If the pharmacy has troubles with stocking (like they have the past 6 months), I have nowhere to turn. I tried getting my meds filled at a different pharmacy, but they all turned me away because my needs were too great. If I can't get the hundreds of dollars necessary each month to buy the meds… I'm toast. So it's not just the thought of the huge drifts of pain that will accumulate through the years, but the stress of not knowing, each and every month, until I'm rolling out the pharmacy door with meds in hand, that seems the most unbearable. It's a really doomy, gloomy thought, so I try to not think about it much. Sorrow? Check. Stress? Double check. Moving on.
I read a really interesting sci-fi book a few days ago called "Factoring Humanity" by Robert J. Sawyer. I don't wanna give away spoilers, but one of the premises of the book is that humanity isn't a bunch of individuals on a spinning rock, totally unconnected from each other, neither is the information gathered over a lifetime lost when an individual dies. Rather, humanity is all connected to one another through what the book terms the "over mind", a collection of the consciousness and information of every human mind that has ever existed. The information isn't lost at death, but rather "uploaded" and saved, like backing up your computer data, and the book goes over the story of how the over mind is realized and explored by a few humans at first, using the information sent to Earth by intelligent life on Alpha Centauri over a period of ten years via radio signals. I know it's just a fictional book, but it really does give me a framework for understanding the world around me that really appeals to me and just makes a lot of sense in some ways. It's given me much to think about, in any event.
That brings me back to the idea of "making a mark" on the world around me, though. Discount the idea of the over mind and just focus in on the thought that when a person dies a shadow of them lives on in a way through the memories of the people they interacted with. I would really like to be able to say that my interactions with the people around me left them happy and better able to cope with the harsh realities of life, you know? Because life is hard. Really hard. Anyone who says differently is selling something. Hehehehe. (Princess Bride reference, in case you didn't catch that.) We all know at least one person who is definitely not a delight to be around, and who seems to just make everything a bit harder to bear; someone who sucks the energy and life from those around them and either doesn't know or doesn't care. I don't want to be that person. Even if I have excuses that seem valid, I do NOT want to be that person. My young life was ruled by a tyrant of that sort, and I know how miserable it can be under their thumb. I absolutely refuse to do that to anyone else if I can help it. I think I've done a pretty decent job of avoiding that pitfall, even with my new neediness that came with the nosedive of my health. Perhaps my "mark" is simply that I made some people happy some of the time, made their lives a bit easier, even? I mean, in a first world world, what else is there?
So I'm turning 28. My husband will be 30 next month. I remember the days when 30 seemed so old! My girlfriend is even older than my husband, if you can believe that. Age never really mattered much to me as much as personal maturity, although I do tend to have a thing for older men. Daddy issues, most likely. I'll own that. lol. So I guess that's it. Just some musings on my life and what I hope I'm doing with it. At this point I don't feel like there's much I can achieve anymore beyond interpersonal goals. I'm just too damn tired. Somehow, I have to make peace with my multitude of dreams and my achy, sleepy reality. I have been doing "better" the past couple months, though. I'm starting to feel like myself again, really and truly. An altered version, no doubt, but no one stays a static version of themselves forever anyway. I'd be altered no matter what.
I've started going for walks again, though, and I get out of the house twice a week regularly, once for grocery run with Corey and once for coffee date with Saka. I've even stopped throwing up all the time, thanks to a lovely med they give chemo patients! I have to take it consistently, though, or else the nausea sneaks up on me really fast and I find myself on the couch clutching my vomit bowl within a span of ten minutes from feeling fine. Gotta keep it in my system. I can't help but laugh sometimes at how different my every day life is from what I'd ever imagined it being!
No artsy cafes or guitar in the park, no challenging classes out at the college with a yoga session afterwards.
No five mile walks in the muggy warmth of a summer's night.
No swell of a pregnant belly.
No certificates of continuing education, no job, no paycheck.
No numbers in my savings account.
No trip to Europe, touring art and culture and food.
There are losses, to be sure. I gotta quit that or I'll start crying. But hey, everyone has losses, and everyone has gains, too. I know I'm better off than I was a year ago, and for that I'm very thankful. Here's to another year of, um… tea and Netflix! Yeah! And a circle of good people who love me very much. That's always a good one.
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