Past Tense

The paperwork is in. Fifty pages compiled by four people and faxed to two insurance companies. Disability. I didn’t want to do it. Indeed, for two years I fought hard to crawl my way back to who I was.

I can hardly function in the morning. I wake up at 5:00 am to take pain my medication, then go back to bed as it works its magic. When I walk up the bloody hill to Broadway, I can feel the hole in my sacrum. My right hip burns, making walking really cumbersome at times. I have pain in my groin that makes sitting, getting up, and walking very difficult and painful. Sometimes one or more symptoms take a vacation and I take advantage of that day, but after functioning for one day, I am usually down for the next two. I need a cane most days and I feel very self-conscious of it. When I would return to the office, I walked slow and after a few trips to the stacks sometimes I could hardly walk. I often closed the door and just cried. Over the course of 27 months, there was only one week where I worked five consecutive days. Defeated.

I tried working from home one or two days a week, but the nature of my position made that very difficult. I could no longer teach–which truly broke my heart. Plus, if pain was bad on a particular day, I was unable to function. My colleagues were upset. I anticipated that, though not the indifference I faced when I tried to transition back into the office in September. The fact was, I was no longer needed. It’s funny how the first 12 months of a cancer diagnosis, some people are really supportive, even those on the margins. If you’re still alive after that point, you become the background noise of life. They may still care. but concern is replaced by anger. One colleague basically told me that I had to earn back her respect. I was floored, though I didn’t show it. I understood the frustration of being down one staff member, but I had to earn back her respect? I didn’t steal anything, undermine a colleague, or sideswipe anyone to advance. Because of what cancer did to me, I had to earn back her respect. I was really hurt. And I had just bought a new suit.

The reality in all of this is that cancer isn’t killing me–my scans are relatively stable. I have no organ progression or failure. Instead it has begun to disable me through pain. And the first casualty? My professional life. A life that has, for twenty years, been 90% of my personal identity. Who I am.

Meanwhile, radiation stabilized the sacrum and L4, with some lasting damage that is painful. But at least scans are stable on the whole. In August the primary tumor in my breast–that had shrunk from 4 cm to just under 1 cm–began to grow again. But this time it expressed itself as a lump that was protruding instead of growing inward. As the lump grew over five months it changed colors. As I write this, the tumor fits into the palm of my hand and turned from a light pink to a dark red/purple. The skin is stretched so tight, it looks as if it will burst.

My oncologist and me had observed this growth for four months. Finally a new form of treatment was chosen: Faslodex. It looks as if things may have improved since the lump no longer hurts, but it has affected the pain level. Not as bad as Letrozole (the joint killer). Instead it is a low-level systemic pain that exacerbates the lumbar/sacral pain.

Stand Out  USE THIS ONE

After the New Year, I wrote to inform my supervisor and closest colleague that I would have to go on disability. It was very difficult, but I began to look at this as an opportunity to move in a different direction. Spend more time with advocacy and do some serious writing. While all of this is true, the optimistic view to a new future was cover for the real intense grief that I was trying to deny.

Yesterday I met with the oncologist and a social worker to talk about the final paperwork before it was faxed. The social worker asked me about my work. “What did you do?” And I proudly told her that “I was the University Archivist at Big University.” And then I started to sob.

Was.  I was.

I worked all of my life for the opportunity that I secured ten years ago. I went to college about 8 years after my friends had gone. I always felt like I was behind, and to that end I worked twice as hard to succeed. I worked two and three jobs to pay for tuition and still maintained a 3.8 GPA. Between ability and luck, I secured positions at influential institutions and worked with some of the most talented exhibit designers and archivists in the business. Eventually I moved to New York and secured my dream job. After two years I was promoted and worked 50-60 hours a week. The repository was loaded with talent, rare books, papers, and records. But it was stuck in the 1960s. My mandate was to bring it into the 21st century. Along with a great staff, I did it. I wasn’t liked by some because of it, but I had been hired to do a job and I did it.

Twenty years of experience as a professional archivist and educator. A job for which I was thankful and privileged to have.  A job where I made a lasting difference.

My career. Gone. I was.

Sure, I’ll survive. If all goes well, I have disability insurance that will provide well for me until retirement age. But I’ll have to move back to the Philadelphia area since it is way cheaper than New York City. I’ll keep my physicians, so I’ll travel to NYC every month. I’ll become more involved in advocacy, do some serious writing, and travel. However, I imagine there will always be a void that will never be filled.

I was. Was.

 

This entry was posted in Advocacy, My Stage IV Life, Social Commentary, Stage IV Musings, Uncategorized and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

45 Responses to Past Tense

  1. Liz says:

    I have fibromyalgia, not cancer, and I was a classical singer and teacher of singing, but every word of this article could have been written by me. Thank you. I needed to not feel alone today. I resent feeling like life is over before I’ve turned 40. I HATE being a was.

    • Scorchy says:

      Liz, I’m glad you found me so that you wouldn’t feel so alone. Regardless of what got us here, the feelings of devastation and defeat are identical. It’s like being thrust into an alien landscape. I believe in time we’ll successfully navigate our past and present, but I know it’s not going to be easy.

      Please, Liz, feel free to reach out any time. Sometimes I don’t monitor my email as often as I should, so if it seems I’ve fallen off the planet just nudge me in the comments. We don’t need to face this crap alone. xoxo

  2. Bev says:

    My heart goes out to you! I am new to the cancer world, just diagnosed in March 2014, but I found your blog and read every word. You give me hope and inspiration. Thanks for your words and your direct approach to this disease. I can’t wait to read about your new adventures!!

    • Scorchy says:

      Bev, I hate to welcome new women and men to the club. But here we are. Thank you for your kind words. I often wonder if I should keep writing, but as long as people tell me that my words help you to navigate this nasty maze in a positive way, then I will endeavor to keep writing. Here’s to us and BORING health updates. xoxo

  3. I am sorry, Scorchy. Last February I went on disability, but I didn’t have to deal with what you have been through, being a lone wolf so to speak… I wish you weren’t in physical pain as you work your way through the emotional… which you will, you’re stubborn in all the right ways. Respect and love sent your way.

  4. Roz Warren says:

    The shit that life throws at us can be overwhelming. I’m sorry that this happened. It totally sucks but stay strong. And thanks for continuing to share it all with us.

  5. The Accidental Amazon says:

    Oh, Scorchy….
    As another woman who got her undergrad degree while working fulltime, decided to change careers, went back to school, had to take undergrad prerequisites, then went to grad school, in order to have the privilege of working as a healthcare clinician lo’ these 20 years, I can so relate to how a simple word like ‘was’ can shatter your identity. But you know what? I’m so proud of you, too. I’m so impressed at how hard you worked to get where you got, and what you accomplished when you got there. No one can take that away from you, even as my heart breaks for your having to leave it behind you now. But, as others have said, you are still you, with all those smarts, all your amazing perceptiveness, all your many talents. Cancer & its treatment aftermath forced me to cut back from full-time work to part-time, and I can also relate to the scary financials viscissitudes of your decision. So, I am incredibly relieved that you will be reasonably okay on that score. We are all so lucky to know you, to have benefitted from what you have achieved here on this blog and with your social media presence. We’ve got your back, girlfriend, whatever the future holds. Much love to you. Big hugs. Fuck cancer. xoxo, Kathi

    • Scorchy says:

      Indeed, the Amazon is right on all counts. I don’t know how I would navigate this space in my life were it not for you and so many other wonderful people. It is scary enough when these milestones are reached, but the consistent decline in degrees of degrees is both heart wrenching and terrifying. But we have to walk through it and I am humbled that we hold one another’s hands to make that walk even possible. xoxoxo

  6. xoxoxo and that’s all. You are: turning the page, writing a new chapter….. and I can’t wait to see where this takes you. Ride the wave, Scorchster. I’ll be riding beside you.

  7. Oh, Scorchy, I’m so sorry for your pain, physical and otherwise. As for your colleague who said you’d have to re-earn her respect, I’m angered yet not surprised. In my own workplace, I’ve seen so little empathy among others. They look at injured or ill co-workers as reasons why they’re saddled with an additional burden. The lack of humanity leaves me speechless, and as a fellow former Philly girl, a lack for words is a rare occurrence. xoxo

    • Scorchy says:

      After I wrote this I remembered that once I had someone reporting to me who was recovering from a sports injury. Every other day three and four hours was lost and I was getting impatient. I just thought this exceedingly long drawn out rehab was out of control. I had a unit to run and this was causing me grief. At some point I stopped to think that as human being who worked hard, was dedicated, and was a generally nice person, she deserved to take as long as it would take to feel better. My ambitions weren’t part of the discussion. And I felt pretty ashamed of myself when I considered the whole thing. I was being an asshole. Now the tables are turned, so I can empathize with the annoyance and the anger.

  8. Deborah says:

    I sure relate to this. Chemo brain made my dream job challenging because I couldn’t handle the complex conversations that were my main task. The disability insurer denied my claim because I’d returned to work for five months and then laid off again. In the insurance world, unless my condition had changed for the worse, which it hadn’t, I’d returned to work and therefore I should have stayed there even though I couldn’t do the tasks. So, I appealed the denial and fortunately the decision was reversed.

    Yours has inspired my post (https://conflictcompetence.wordpress.com/2015/02/18/get-over-it-or-get-past-it-or-both/). Maybe, some day, I’ll be over this experience. Maybe I’ll be ready. Until then, in baby steps, I’m getting past it.

    • Scorchy says:

      I really love the distinction you draw between “get over it” and “get past it.” It’s a very subtle, yet important difference. How can we get over something that will eventually kill us? I’ve always relied on “suck it up” when I’m ready to move ahead. I realize now that sucking it up is summoning the courage to move past. And it dies take courage. xoxoxo

  9. Elizabeth J. says:

    I so get this. My district laid me off by combining my job with another position outside my area of certification while I was going through treatment. I couldn’t have gone back anyway as I became metastatic, but it should have been me and my doctors making that decision. That was combined with the district trying to prevent me from getting the state teacher disability. It had to be initially filed through them. 20 years loyalty and I got treated like that! (My actual school, the people I worked with, were very supportive.)
    I felt like I had lost a big part of my identity (music teacher). I now volunteer at a private Christian school one afternoon a week as their music teacher, about what I can handle. And I am forging a new identity in life as grandma, both grandbabies born after the cancer diagnosis.
    Scorchy, you are amazing. You will use this time to build a new identity, after all, in the long run, our work is merely what we do, not who we are. God bless you!

    • Scorchy says:

      What an amazing journey. People and institutions that thrive on screwing people rather than supporting them is unconscionable. Congratulations on your new grandbabies. You have truly lightened ny heart.xoxoxo

  10. Juneaubugg says:

    💖

  11. Dorry says:

    Ugh. I get it. But you still ARE. I’m glad you have the finances to be secure.
    xoxoxoxo

  12. tw says:

    It seems all too often we become entangled with our careers and find ourselves at a loss when that strand is taken from us, through illness, severance or employer malintent. The grief and sense of loss is made all the worse because we’re indoctrinated from an early age to work hard, do a good job and be a model employee. The truth is you’ve done all of that and more and no-one can take it away from you. What’s also true is that you have always been so much more than a professional archivist and educator and without any shadow of a doubt you’ll continue to be so much more. The difference you make comes from the person you are today, the things you do tomorrow and the love you share along the way. You, Scorchy, make a huge difference.

  13. DrAttai says:

    You ARE, and always will be.

  14. Caroline says:

    I was laid off from my job two weeks before my diagnosis. I tried to job hunt as I went through surgery and chemo and finally gave up and found a local part time job to help me keep my sanity. For a few years I worked two part time jobs for a total of around 35 hours each week. Now as my health declines with degenerating disks in my back, RA and fibromylagia as well as two cancer diagnosis, I work maybe 15 hours each week. I used to be the marketing director for a large nonprofit in Boston. I had a career. I was financially self sufficient. I will not have a career again. I try not to think about it but probably should as it stills brings me to tears.
    But I can tell you there is life without the big career and it can be more interesting. I hope you write your book.

  15. Irene C Miller says:

    You will never be an (I WAS) We all need to shut doors but then new doors open. Change is hard. But knowing you, eventually, you probably would have moved on anyway, even in a healthy state. Because you met your goal here changed what you wanted to change. You made a statement. And when all is said and done, when you are moved back into a comfort zone, around family and friends you’ve known for years, you can concentrate on you. I promise you things will get better. And in a year you will be saying to yourself, “I made the right choice, I am happy now”. Good things are going to come out of this. You will feel like an ( I AM ) again. Love Ya Baby Sister

  16. Sarah Bucket says:

    Oh Scorchy
    So, so sorry. It’s getting rarer for those of us with #bcmets to carry on working. I’m down to three days, one from home, and with spread to liver & susequent chemo am unsure how long I can continue. It will be devastating to give up such a big part of of my life, my identity, my self worth, my raison d’être.
    You have as much empathy as I can heap across the Atlantic.
    Please keep writing; your honesty and directness coupled with humanity is rare and refreshing.
    Big hugs
    SJx

  17. BlondeAmbition says:

    One more thought … I know you’ve always thought about writing a book, and I believe this blog is something that needs to be preserved and shared. Maybe now is the time to focus on this along with your advocacy and other pursuits. The working title in my mind, is, “I AM”.

  18. BlondeAmbition says:

    Scorchy, this is heartbreaking and having been out of work during and after my own dx, I have special appreciation for what you are going through with your identity. It’s been very difficult to redefine myself but if this helps at all, your job doesn’t define you. It took me some time to recognize that. What DOES define you is your resilience and your remarkable back story. That you went after your dream — getting that degree while working multiple jobs and never giving up or caving to what some might have deemed impossible. Allow THAT to define you, as it is powerful and represents the person you are. I know how much the job stuff hurts and the insensitivity of those colleagues is painful and cannot be minimized. But YOU are much more than your job or title. And you are loved. xx

  19. If it makes even a small difference, you ARE someone who I enjoy knowing.
    The internet tells me that it’s your birthday… so, hmm, I forgot where I was going with this.

  20. dear Scorchy, i wish so much i could take some of your pain. i am so sorry for the “i was” that you feel. i know that feeling well and it really hurts. but darling girl, you said the exact perfect words:
    “…as i reinvent my life.”. you will…you will… i promise that all that you have done for so many of us with your blazingly bold courage to speak the truth, to encourage and inspire us to get back up on our hind legs as you’ve shared your story with such eloquence – it will all come back to you many times over. i love you. ooxoo, karen

  21. janipani says:

    U still are. NEGU!

    Sent from my iPhone

    >

  22. maesprose says:

    I was – that is what you say and I feel your disappointment. What you are though is amazing. I’ve been reading your journey for over a year now. You have immeasurable strength, razor sharp wit, high intelligence that is all beautifully expressed with your writing. I have no doubt the new life you build will be something you will one day speak of with pride.

  23. Tomi Morris says:

    No words. Except we’ve still have you. It may be a new journey, but we still have you. New torches to carry. New “good fights” with advocacy. I know we couldn’t make our December plans for Winterthur, but hope to see you sometime very soon. The Show Must Go On.

  24. Scorchy, my heart breaks at what you are leaving behind. I am dazzled by your courage to make a painful choice that will help you be the best you that you can be from this point forward. Xoxoxo.

  25. Dear Scorchy – I am so sad for you. Losing one’s identity is really hard. It will require grief work. Much love, Lois

    • Scorchy says:

      Thanks, Lois. Yes, it will require work. I know that things will all work out in the end, But I will have to go through those five stages and work to get past it. I loved it all so much.

  26. jgolden08 says:

    That is so sad and awful and worse about the pain. I’m here for you in Philadelphia. We’ll find you a good place and your friends will visit. I’m thinking of you.

  27. marina says:

    Nothing will ever define you as much as the courage you have to respect yourself. I love your strength and your honesty. I read your entries and feel inspire by you. What people don’t understand is that we are all using a second of universal time. Some of us are trying to make it count. You help us.

    • Scorchy says:

      Marina, thank you. I needed to read your kind words. I am glad that I make a difference through writing, and I hope to do much more of it as I reinvent my life. xoxo

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