Thursday, March 22, 2012

Sam Hyde, 19-- to 2009


I am very proud indeed to be able to state unequivocally that I have never read nor watched any of the Twilight series. I’m just not a big fan of vampire lit. My reaction tends to be more along the lines of, “I wonder if we throw some holy water on the books to see if they burst into flame.” (As a side note, that is about the  only type of book burning that I would support).

All that being said,  I have read a few books about some undead group or another. And I have to say, whether you’re interested in vampire lit or not, it’s pretty pervasive. An awful lot of angst has gone into writing about the regrets of the poor undead: what they go through, how they miss being alive, etc. ad nauseam. Some of it is well-written; most of it is crap.

But this is a lupus blog. What does it have to do with the undead? Well, fundamentally, lupus patients (and those with similar diseases) are the closest things that exists to the mythical undead. A lupus patient with moderate to severe disease has lost her life. It’s gone. It’s probably never going to come back. She’s alive, certainly, and admittedly does not have to dodge priests with wooden stakes, but her old life is still gone.

Take me as an example, simply because I’m the example I know best. I used to be a rock climber. Now I’m recovering from the second of three surgeries designed to make it so that I can use my wrists. I used to be a runner; on weekdays in the winter I would get up at 5:30 in the morning to take the first available bus in to go to the gym before work. I would run every morning, and then most evenings I spent training at tae kwon do. I was a bicyclist; not a pro, by any means, but somebody who would tackle a 20 mile rides with hills on a very regular basis.  Now I walk with a cane, donated my bike to charity, and have such vertigo that I would probably fall down if I even entered a tae kwon do gym. All of those things, many of which I used to define myself, are gone. That part of me, if not dead, is at least in a very deep coma.

I was also a musician; I took years of private oboe lessons from a professional oboist who has a Masters degree from Juilliard. I kept playing until the pain in my hands and wrists became unbearable. I have at times tried to replace oboe playing with singing, but when you have inflamed lungs and ribs it makes it very difficult and painful to sing.

 I used to also be a very regularly attending church member; I have been all my life, somewhat to the puzzlement of many of the scientists around me. Now… well, I was proud of myself for making it to Ash Wednesday service and not having to lie down on the pew out of exhaustion. Many of the people at the service didn’t recognize me because I looked so sick. These are people I used to see every week. I was even on the board of directors of my church, but had to refuse a renomination on the grounds of health. Even something so mundane as attending church every week has become an unattainable goal for me. The old me is gone, and she has been for a couple years now.

 You might reasonably ask why I’m telling you all of this; some of it is reasonably personal. The reason is really quite simple. I have been thanked many times by other patients for expressing sentiments and experiences that they and I share, but that they find difficult to express. So, on behalf of patients everywhere, please understand that every seriously ill person is in mourning. We are in mourning for ourselves. We miss the people we used to be far more than you can ever imagine. Just like all those glittery, angsty vampires, a large part of our life is gone. A large part of our self image is also dead.

And for those who are new to the chronic illness experience this means that we are experiencing a time of great pain and of figuring out who one really is, once you remove all of the external activities, hobbies, habits, etc. of life. So please, be patient with us. If we seem moody or as if we’ve changed it’s because we are and we have. We are learning to live a half-life or, hopefully, learning to live a full life, although not the one we had before. Because that life is gone, and it won’t be coming back.


Image Credit: http://www.cartoon-clipart.com/cartoon_clipart_images/cartoon_vampire_about_to_suck_your_bood_coloring_page_0521-1010-2321-4328_SMU.jpg    

15 comments:

  1. All sympathies. I know exactly how you feel and thanks for sharing this on behalf of us all. All I can say is "it's life Jim but not as we know it". Something to cheer you up:
    http://www.youtube.com/watch?v=_vPWE2Ebz48

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    1. I know a professor who had that quote applied to him on a course evaluation. :) I just wanted to get this out there, as few healthy people get it.

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  2. Well said Sam! As always! Hope you're healing up nicely.

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    1. Thanks! I seem to be healing okay, although my right hand really doesn't like it when I shift into third gear. I'm afraid I won't be driving much until it heals. Apparently I shouldn't have a stick shift.

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  3. There are a number of serious differences between you and a vampire. Such as . . . if you were dead or undead, your wrist would hurt a lot less. Vampires can eat at least one thing (blood) without feeling naseated. You don't have people swoon as you walk past. You neither sparkle nor spontaneously combust in sunlight. (You just get really sick.)

    On the plus side, I'm bored with reading about vampires, and I'm still reading about you. I'm basically healthy, but I can tell you that life rarely goes the way it was planned, although the details take different forms. I'm glad you're willing to share. I'm also glad that you are a religious person, because you can look forward to 1) a totally refurbished body in the ressurrection and 2) a really good explanation from God as to why things were the way they were. (I'm looking forward to those myself.)

    Also, I have read at least sections of all of the Twilight books and I regret to report that if you poured holy water on them, they would just get soggier.

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    1. Yeah, I used to ask my (Episcopal) priest if I could get a note excusing me from all of this. Sadly, she wasn't able to help me out there.

      You've read parts of the twilight books? My profound sympathies! I used to get inundated with information about it from the pre-teens with whom I used to do tae kwon do. It was enough to turn me off the entire series.

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  4. Thanks for detailing the changes that lupus has made in your life. Before getting to know your mom, I didn't know what lupus caused. I have friends with MS and a coworker dealing with multiple myeloma for about 6 years, so I thought I understood how a disease can force changes. You've given a much broader view and explanation. Thank you. Ready to start red gloves if you want.

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    1. Well my mother and I have very different lupus stories. While we both had symptoms in our teenage years, I was diagnosed at nineteen whereas my mother had already had four children when she was diagnosed. Also, I support myself financially, whereas my mom was married when she was diagnosed. I'm sure that made a difference in how it affected us on several levels.

      I'm sure my mom had to go through the same mourning process, but it was probably a little bit different. (If for no other reason than we were at such a very different stages of life at the time of diagnosis). That being said, my disease didn't get really bad until my late twenties, so I had kind of a long time to get used to the idea, or so I thought. At least I knew that there was the possibility of its turning nasty, so I packed in as much life as I could during the intervening years.

      Wow… if you want to make me more gloves, I would be thrilled to have them. I think I gave you slightly too long measurements for the fingers, though. They work out fine, because I can just fold over the top, which looks really chic. But I think that for other styles of gloves they should probably be about 1.5-2" shorter in the fingers. Totally my fault for giving you the wrong measurements, and as I say, the one I tried on the non-surgery wrist works totally well. I looked at the pattern pictures you sent, and really liked the “welted fingerless gloves,” and the “Kathy's fingerless gloves.” But all of them look great! Thank you so much, it is very very kind of you!

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    2. Yes, I can understand the two experiences are not the same at all. And I'm learning it IS different for everyone. I am in awe of your determination to support yourself and DO as much as you can.

      And, as far as too-long gloves, its as much my misinterpretation as anything. If the green ones are too much of a hassle they can be easily frogged back shorter. I'll try some swatches with the red yarns and see which of the two patterns work best. I was pretty sure you'd like the stylish welted ones. With purls?

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    3. The green ones are honestly not a hassle at all. I'm assuming that "purls" means the bands of what look likes purl stitching at the bottom of the gloves? In which case, yes I like those.

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    4. (giggles) just caught my knitter-typing-too-fast goof! I meant "pearls"--- the pearl buttons at the cuff. Silly me! I do have pearl buttons and was thinking I could sew them to a ribbon strip so they'd be easily removable if you wanted with/without pearls.

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    5. Oooooohhhhhh. Ok. I was startled that there was a knitting term I didn't know. Pearl buttons would be lovely, removable ones would be even better. :)

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  5. I read parts of the Twilight books as a responsible parent whose teenagers were reading them. By the time I got to the last two, I skipped through and just read the most lurid parts to determine if those would scar them for life. But as it happened, they got bored before they got that far.

    I'm not surprised that your priest couldn't give you a note excusing you from mortal trials. Even in catholicism, they only excuse you from time in pergatory (and seriously, who needs pergatory when they've already had lupus?)

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  6. The same mourning process applied. I had small children growing up in the city, rather than having a ten-mile-long park behind the house like I grew up with; I couldn't just turn you loose to go explore the woods and creek like I got to do--and I couldn't even take you to the park! I grew up closely connected to Nature, while you kids got intermittent doses of it, like when Dad took you camping (with or without me depending on flare level.) I will forever regret that lack. But it was what it was.

    I'm very glad your diagnosis came as quickly as it did, no matter how hard I may forever wish you never had to go through any of that; I spent 17 years being told outright or hinted at that whatever I was complaining about must be all in my head, when I knew full well they were wrong; as I told Dr. R, I don't complain, and he said, You don't! So that if I say something, that means they really need to listen up.

    Some of the complications of pregnancy that I had made far more sense later when I knew what had been behind them.

    The oboe playing will come back. The strength will come back. Recovery is a slow process but it will happen. I have twice been where I did not have the strength to get up and walk down the hallway, but I made it back. You will too. Hang in there. Love you!

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    1. I hope you didn't think I was trying to imply that you didn't have such a mourning process. Just that it's different. As of course it would be between any two people.

      I never felt nature–deprived. Don't you remember how I used to run every day with Julia? Most of the time we went up into the Stanford hills, which is the nature that is, well, natural to where I grew up. We saw lizards instead of chipmunks, but it was nature nonetheless.

      Not sure if the oboe will come back, but I hope the singing will. I am cautiously optimistic that the Benlysta is starting to kick in. It's just a long and very bumpy road.

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