Flayed Alive

I used to love to enthrall my history students with tales of the Assyrians. They would flay their victims while they were alive and parade them in cages to the next village on their map of conquest in order to frighten their adversaries into submission. It’s horrible, of course, but so many thousands of years removed that to speak of it in dramatic and compelling ways added to the suspense and engaged my always skeptical history audience.

My career was always the most important thing to me. From the days of a child playing “business woman” with my Barbie case, to actually working as a professional I enjoyed every moment–even the maddening ones. The schedule, structure, and promise of new projects made me happy as a clam. My enthusiasm was often interpreted by the old guard as aggressive and adversarial, but that really never mattered to me. If I was given a mandate I made it so. And I made it well.

When I started my position as Curator of Manuscripts and University Archivist at Columbia University’s Rare Book & Manuscript Library in October of 2006, I was taken back at first by the scale of the projects that were ahead of me. But I had the unique and enviable position of remaking the operations of one of the nations largest manuscript repositories and bringing it into the 21st century. Along with a team of competent professionals I was able to do this and it remained perhaps the happiest eight years of my life (counting the two previous years as University Archivist). Ten years of promise and downright fun. Hard and demanding work that brought about the best and the worst in me at times. But I did it.

I had ten years worth of plans and projects floating about in my head when cancer struck in 2012. At first it seemed like I would be able to manage it, but pain from bone tumors and the malaise that came from medications affected everything about me. My memory was shot. Sometimes the drugs for the back pain made me feel like I had been smoking pot during school lunch period and decisions were hard to make. Then I had so much pain that I needed to take time away. Lots of time. I fought so hard for a year to come back. My vindictive boss was trying to dump me, but I persevered in part because I knew if I were to go on disability, I had one more year until my birthday to do it. Perhaps others didn’t see it, but it felt as if I was clawing up a mountain with my fingertips. I cried, worked in pain, and tried as hard as a could. However, in December of 2014 I realized that I couldn’t do it anymore. And I accessed the generous disability insurance from my employer (and working on the government end, too).

The loss of a 25 year career in special collections and teaching has torn at my very soul. I thought I could be alright with it and move along, find other things to keep me busy, but it hasn’t been that easy. I miss the influence I had. I mourn the outlet for creative energies that are always flowing in my brain. I miss the schedule, the travel, and the satisfaction of a job well done. Oh, and how I miss my students! In a very real sense I lost my sense of self.

One of my friends who is in a similar position told me once that what frustrates her is not being needed. She could sing or sleep all day and no one would notice or care. And that is how I feel. Useless. Like the bag of clothes pins I have and no line on which to pin them.

Friends have left as well. There seems to be a two year limit on friendship when you have a chronic condition like this. I don’t know why, but with former colleagues I’m sure they don’t know what to say, since the biggest topic we talked about was work related. But, believe me, I wouldn’t have spent my time with them had I not thought they were great people to begin with. I’d love to hear stories about the workplace. I understand in a real way, but it would be a way to feel connected again.

I’ve seen the eye rolls when I tell people I’m not the person I used to be. Well, how would they know. I’ve lost 50 pounds and I look completely normal. I look great! But the fact is that I am not. Fuck you, man. I lost weight by not eating, no planned intent. And I’m jealous of these “lifers” who can work, raise their kids, jump back and forth shopping and whatever. When is it my turn to feel okay enough to do stuff like this? Yet, I know it’s not easy for them either. Whether it’s numbness of their chest walls, medication side effects, etc., they don’t have it easy. It just looks that way. In point of fact, we’re on the same lousy trajectory, just in different ways.

Flayed

Assyrians flaying prisoners alive.

And disability really sucks. When it’s super hot I have to stay in because of my hydration issues–can’t seem to stay hydrated since I was diagnosed with renal insufficiency on top of this fucking cancer. When I have a lot of pain in my back I can’t really go anywhere, so it’s in the apartment with my feline buddies. I read, color, write, knit, and watch movies, but my brain feels like mush and without real purpose I feel defeated.

I’d love to spend every day in a museum, but I’m often just too tired or my stamina is just low. I think the time I felt most defeated was when I was hit by vomiting the water I had drunk just minutes before in front of a grade school when kids were coming to class. That sucked. Oh, and now I’m anemic. Fucking anemic. Another pill. Another reason for malaise and feeling less than normal. Oy veh. Nothing is like it was.

Disability has left me feeling skinned alive. All of my professional talents and desires have been stripped from my very person; from my very soul. It’s horrifying. And it’s gotten to the point that I have to seek out help to try and come to terms with this overwhelming loss. For it is a profound loss, a death if you will. And I don’t know if I can ever accept that this productive, rich, and enjoyable part of my life that I treasured so much is gone forever.

I envy anyone who is on disability and enjoying it. I don’t think I ever shall, not when I know that there was so much more I could have achieved and contributed. Not when I’ve been flayed professionally for all to see.

This entry was posted in My Stage IV Life and tagged , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

20 Responses to Flayed Alive

  1. anomar13 says:

    I read your posts faithfully although I have not commented in ages. I am lucky-remaining cancer free since surgery for Stage IIB. However, I understand the new reality of exceptionally tired and sometimes feeling defeated. Pain is an everyday reality that I just have learned to ignore most days (muscle damage). It is nothing compared to what you go through, I know.

    My real purpose is to encourage you to write-first a new post for all of us who love you-then a book. Write what you know-find someone to help edit and share your vast experience with a new generation of curators and historians. YOU ARE NOT USELESS AS LONG AS YOU ARE BREATHING AND THINKING (Even if you are not as quick as you once were). You have a great deal to offer and share with others.

    Different is not always bad-it can mean a whole new future.

    Love,
    Ramona

  2. MBS says:

    Wow, Scorchy, you did so well in your career. Ten years at a pinnacle job, and a legacy that will last for many years. I’m honored to know you! I wish I could say something to ease the grief, but I probably can’t. I feel much gratitude for your wise and irreverent voice. It’s been a big help to me on my own trip through cancerland.

  3. maesprose says:

    You are an amazing writer and that is something cancer can’t take away from you. If it is possible to send strength and virtual hugs, know that you have them.

  4. Susan says:

    Oh Scorchy I loathe the way this disease puts so much pressure on your body and mind. You are such a strong and worthy person who I admire so much. Your wit, charm, humor, mixed with your truth exposed is always a part of you. You have had to change because your mind and body are in a new place. Daily wondering what is coming next and huge confusion of your relationship to the love of your work. I have no answers, but I know that you deserve to live your best life. I hope the writing helps to get this off your mind. I send you tons of love and hugs. xoxo – Susan

  5. Roz Warren says:

    Your blog matters to a lot of people, including me. It is SO not the path that you would have chosen (or that any of us would have chosen for you) but the fact remains that you are damned good at it, and we appreciate that.

  6. Norah Hall says:

    Writing is cathartic and good for the soul, no matter how shriveled and burned it may feel. It’s ok to be sarcastic and snarky too. Sometime there’s no energy for either one of them so one’s writing becomes introspective. It’s good that you are back and I know how you feel. I juggle work but it kills me, I’m so tired by the time I get home. But I do to keep myself sane. Keep on writing/screaming and moving forward, even if it’s tiny steps. You’ll be ok. Hugs.

  7. And BAM you are back. Glad to see this side of a metsters view. This was the hardest part for Seporah too. She hated that she could not work and her mind would “shut the fuck off”. Volunteering was all she could handle and that exhausted her when she did it for 2 hours a week. People need to see this side. Thank you for sharing you life XO

    • Scorchy says:

      I think of Seporah just about every day. GODDAMNED cancer!! I think this is something that hits everyone on some level, but we don’t talk a lot about it. Good to see you, Upstate AM! xoxoxo

  8. I was thinking of you today and here you are. Wish I had something smart and wise to say, or at least something to make you laugh xxoo

    • Scorchy says:

      I’m okay. If I take the long view this is just one part of my life–albeit a big part. I’ll make it through. I just need some help to do it. Much love. xoxo

  9. Dear Scorchy,

    no words…just enormous amounts of love and gentle, warm hugs to my Darling Friend. I love you.

  10. jsmillard says:

    I have heard it said that below sarcasm is anger. And below anger is sadness and hurt. So your post feels as if a volcano has released and then burned off the lava layer and the fire is easing somewhat. I hope so. Because under all that could be the intensely dense and strong wisdom and ability to communicate that you have; that you maybe *are.* Your work is/was a way to put it to use and feel satisfied, rewarded, connected.
    Maybe Keith W. is right, and you can connect your gifts to others now. Maybe something else will emerge as a passionate focus, to give and receive your energy. I hope so. And if it doesn’t happen for a while, I hope you can return to feeling your power self.
    I do not know you, aside from reading your writing. Which turns out to hold lots of who you are, I sense. You are still there!

  11. Pam says:

    Have missed your posts. I’m so sorry about you having to leave your job and go on disability. I had to do that about 20 years ago and it’s a huge blow to your self worth. Like others since going through the whole cancer roller coaster I’ve just stopped doing a lot of things. It’s very hard to get motivated . You go through shock, denial, suffering, pain, relief, change, anger…so many emotions and I think they really take a toll on you. I also look pretty good, but unfortunately gained weight, although my hair is growing and pretty. Hang in there. Thank you for posting x

  12. Dear Skorchy,

    You’ve achieved much in your career, making the loss ever more painful. From your writing and humor, mixed with the ability to pull brilliant sarcasm out of this crazy world, it is obvious that you have many talents. Kudos for seeking out help. It takes a village, and that help is part of the village. So are we, your readers and friends. Prayers for strength to you. I admire you more than my poor attempt at words can convey.

    {{{{Hugs}}}},
    Debi

  13. dglassme says:

    You know Scorchy, it takes a lot to say these things aloud, we’ve all missed your talents as a writer. What’s different today as compared to the day someone asked if I’d seen Sarcastic Boobs blog, sarcasm. Your writing is now more…ah, shall we say sharp, direct with no sarcastic cushions. Where is the lite hearted funny girl, someone stool her away. The one who could mix the most difficult of topics blow-by-blow with a bit of quirkiness. And I get why, your diagnosis is very different today compared to the offshoot of all this cancer crap. At least for me, a mere onlooker, that’s how you have changed. Odd how we think our jobs define us since we spend 90% of our waking lives doing them.

    ❤ HUGS Girl ❤ ~D

    • Scorchy says:

      You’re right. The snark and humor I suppose have been tempered. Somehow I must have never really absorbed what wad happening to me and the way to “deal” was to laugh at it. My hospital stay changed me. Things got more real in a way. And as I am left contemplating life without my work the gravity if it all hangs on me. I don’t think the snark is gone forever, but it’s hard for me to tap into that with t hi is subject. I had to get this out of my head before I burst! I love you, my friend. xoxo

  14. The Accidental Amazon says:

    Oh, Scorchy…this just sucks. Like Keith, I’m glad to see a post from you, and he may be onto something re consulting. But I can very much relate to how profoundly your identity has been defined by the knowledge, experience and ability you brought to the job you did for so many years, and all the pleasures and sense of accomplishment it brought to you. It’s a huge loss, and at least you have been able to acknowledge it as such, the first step toward being able to address it. Even though I’m still working, I feel like I’ve been experiencing a protracted identity crisis ever since I was diagnosed and treated. I’m so not the ball of fire I used to be. I’ve had to let go of a lot just to cling on to what I can do now. Most of my colleagues don’t really ‘get it’ either, have no idea how much it continues to cost me in terms of stamina to do less than I used to do. It gets old. Really old. But yes, at least I can still feel useful. That’s the worst of it, isn’t it? To feel useless, like you’re just taking up space and not giving something back to the universe. Why bloody get up in the morning if that’s how you’re going to feel? It’s miserable.

    I hope that you can find a way to feel useful again. You still have so much to give. The trick is figuring out how to retool a few avenues in which to give it. I love you, my friend. Wishing you light and inspiration. And Floyd can suck it.

  15. KeithW says:

    Flayed or not, I am damned glad to see you post again. Seems to me you would have a huge amount of skill and experience in areas from preservation to presentation, and databasing and synthesizing knowledge.

    There’s got to be a lot of people at smaller universities and colleges all over the country who would love a guiding hand, advice and expertise in trying to accomplish what you have only on a much smaller scale. Given the Internet Of Things is upon us, you could provide expertise that they could never afford otherwise. You could help some disadvantaged folks preserve history and knowledge that might otherwise just crumble away.

Enter the Fray

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s