Disability and Grief

Aquarium cleanup

Aquarium cleanup (Photo credit: Cochonou)

Before my injury, I had an amazing job. I worked as an aquarist, which is a zookeeper for fish. I got into this career because I loved animals, but I was allergic to most of them! The ones underwater, however, didn’t make me sneeze. I have fed mola-molas, stingrays, moray eels, sand tiger sharks, zebra sharks, nurse sharks, and white tip reef sharks from inside the fishtanks. There’s a youtube video out there of me inside the tanks in the Staten Island Ferry Terminal helping get it set up, and I’m in countless family photos from my time in the water in Spain and Guam. I’ve wrestled sea turtles and sharks for medical treatments, had baby walruses suck on my fingers, and trained a fish to kiss a target on a stick in the water just like how they train dolphins and sea lions for shows. I saved the lives of many animals by noticing and fixing mechanical problems before they were too late, and I did the research and work to extend the lives of animals from electric eels to jellyfish to octopuses by finding out how to take care of them better. I’ve gone into the tropical sea and helped catch new animals for the aquarium, designed exhibits, and diagnosed and treated sick fish, worked feverishly and daringly to save sick and injured animals, rejoiced when they healed, and cried when animals under my responsibility died. In the 7 years I worked in aquaria, I chopped tons of seafood and cleaned square miles of aquarium windows and backdrops.

I went to school two extra years to get into this career, and I worked my butt off in school and in every job I had after school. I was pretty good at what I did, and was always working to become a better fish keeper in any way I could. Before I was an aquarist, I drifted a bit–I majored in biology, worked in a microinvertebrate laboratory, almost wrote a groundbreaking paper on slow loris behavior but got distracted, worked doing field research on playground bullying, and then ended up working phones and reception for a major hospital. I made some of the best money I’ve ever made at the hospital, but I never felt like I was making enough of a difference, and my aquarist career was like finding my life purpose.

Then, on July 5th, 2009, as I was wrapping up for the day, my shoe got caught in some stairs behind a tank and I stumbled down the stairs, twisting my ankle hard at the bottom. I heard something snap. It hurt a lot. There’s another post about how I slowly lost my career and then my ability to work at all to the CRPS that developed from my injury. But when I say I lost my career, I lost something that wasn’t just an acceptable way to make a living. I lost my vocation, my daily love, my purpose in life. Something I had moved across oceans for three times. Something I had given up a relationship to learn how to do. I lost something so precious to me that even writing this right now brings tears to my eyes. I lost, not the 7 years of my life that I threw myself into heart and soul, but I lost the reason for doing so.

Before my injury, I liked to dance. I took hip-hop in University and was in a little modern dance troupe,. While I attended aquarium school, I sang and danced in the chorus of several local musicals. I have been a singer since I was a little kid, and when I moved to Guam, I sang jazz in some of the bars with the local bands on weekends.

Before I got hurt, I would go snorkeling on Friday mornings and take pictures (or try to) of the amazing animals I’d see. I would drive around the island and stop to take photos of the things I found beautiful. I went hiking sometimes, too.

Before I got hurt, I would go on dates with my sweetie. We liked to travel and find ways to enjoy trips together with our opposite traveling styles. I went traveling alone quite a bit too.

Before I got hurt, I would sit at my computer for hours, designing web pages, writing poetry.

Now, if I sit up for more than an hour or two at a time, I start to hurt too much and have to go lie down. I can’t pick up and hop on a plane when the tickets are on sale, walking the foreign cities I love to explore. I rarely go out with friends or on a date. I don’t snorkel or hike much, although with careful planning and luck of a low pain day I can manage something that doesn’t go too far or take too long, as long as I have someone to go with me. I can’t stay out late enough to sing at bars, and I don’t jump or dance anymore. It’s hard to imagine having the energy to be in a musical.

And I’m not an aquarist. I’m not a chemist. I’m not even a receptionist. I’m disabled. Is that who I am?

I have lost so much. For a long time, I didn’t know what I had left. I didn’t know if I had enough left to scrape together a me. I didn’t know who I was now, without the things I used to do. A lot of people with CRPS (and with other chronic pain conditions) commit suicide. It’s not hard to understand why, when we’ve lost so much of ourselves we aren’t even sure who we are anymore. One of the first things a stranger asks to get to know another is, “What do you do?” What do you do when you can’t do what you do?

I couldn’t think about my loss, because every time I did, the negative emotions would make my pain flare. I went to see a therapist. I wanted to know how to move on. She first told me I had to grieve, and I tried, but it just make my pain so out-of-control that it wasn’t worth it. I decided I had to move on. I knew I wasn’t my job, or my body. I knew I needed to accept my new situation and make a new life, but even though I could think it through logically, I just couldn’t move past the feeling that I had lost myself along with the rest of what I’d lost to pain. I was stuck. I went back to the therapist and tried to explain more clearly. I was angry at myself for understanding what I needed to do to take the next step and yet not being able to do it.

I kept saying to myself, “Get over it already! It is the way it is, and you know wallowing is no good for you!”

This wasn’t working.

The therapist explained that without grieving, without acknowledging the depth and severity of what we’ve lost with kindness and understand towards ourselves for hurting, we can’t move on. You can’t bully yourself past the grief step. You just get stuck. And that is what I had done.

My therapist and I set up a safe time to grieve. I could stay away from my loss when I was at home, needing to cope with my pain. I couldn’t afford to grieve full-time. But I could do it part-time, every week, in her office. I had to honestly, mentally pat myself on the shoulder and say, I know, I understand, this really really sucks.

And the moment I gave myself the acceptance and kindness I needed, I started to be able to accept my new life, my new self.

I don’t think I’m done grieving. I think that I’m going to be grieving in little bits for years. Right now, I can’t go to an aquarium, but I expect that won’t last forever. That’s going to be painful and raw for a while.

But I’m also learning how to love my new life. And I can! I love blogging, I love sewing, I love love love yoga. I love finding other people with chronic pain and trying to find out if I know anything that might help them. I was empathic before, and I love that I can be a better empathizer now. And I love the kind of person that learning to live in the moment is making me.

I may get to do some of the things I used to do before, I may not. I probably won’t ever work in an aquarium again. That’s sad, but okay. I have great memories of the time I spent in that dream job. I’m ready to find a new dream. I’m feeling the oceans of possibilities open up around me for a new life that I love. I’m no longer in a rush to get anywhere. But I’m looking forward to seeing how this turns out.

Everyone grieves at some time. Treating ourselves with kindness and understanding instead of impatience and frustration is the only way to truly move through grief. We may worry that we’ll get trapped in the sadness and not move on–I know I had that fear. But it turned out I was bigger than that. I just needed to trust myself. I hope that by sharing my grief that maybe even that struggle will touch another person in the way they need to help them grieve. And if not, that’s okay too. I learned what I needed to from my experience, and that is one person that is the better for it. Everything else is gravy =-)

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26 responses »

  1. How absolutely wonderful.
    You say ‘I’m disabled. Is that who I am?’
    Well, this is my first visit here and I know the answer.
    You are just brilliant.

    And thank you for your very kind words on AnElephant’s blog.
    Very much appreciated.

  2. Wow, this is a heart-felt moving post that really spoke to me. Very brave and I’m sure it will touch many people. I love the shift in energy in the paragraph starting “But I’m also starting to love my new life”. You truly are an inspiration and will go on to inspire others to move beyond being “stuck” in grief of one kind or another.

    • I wish I could virtually hug you at the very least. I too have RSD. Full body , 12 years. I always say it’s been a mixed blessing for me. Developed my disease when my children were just toddlers. Consequently lost a job I loved & ended up being home with them for all these years now. Would’ve never had that chance otherwise. You are so right, it’s very difficult to redefine yourself when all you know is “the working you” or the “healthy you” , it’s a constant challenge, isn’t it? This is a lovely entry.

      • Thanks for the virtual hug! Twelve years! You’ve really had time to grapple with this then. I think it is the constant challenge, keeping us on our toes, that helps make us “special” and I love it that your RSD guided you to spend more time with your little ones–that’s a really great up side!

  3. Your courage and diligence are true inspiration. I hope that multitudes of those who feel hopeless or suffer despair, can be enlightened by your willingness to share your defeat of hopelessness.

  4. Wow. I almost feel ashamed for being such a whiner. I say almost because I realize I cannot compare my own situation with another so I’m not even going to go there. Yours is truly an inspirational life story and I’m sure will give all who read it much to think about–and be grateful for.

    • I think we often feel like whiners when we’re just being honest. To me, there’s a huge difference, and people in chronic pain very seldom actually whine (complain without working to make better). I like what you’ve written on your blog, and you’re right, we each have our own story and comparing doesn’t usually help anyone all that much. I’m so glad you found value in my story =-)

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  6. Wonderful post! Looks like one more I need to follow.
    I am disabled also and, no, that’s not who I am either.
    I hope you will take a look at my blog and see that I understand a lot about the you you speak of, because I am that person, too, in so many ways.
    Live happy!

  7. As a student of management I am in the know of many careers & professions. But the work of an aquarist is very new to me. Nice to know your love for animals made you choose this wonderful and challenging work.
    Best wishes & cheers 🙂

    • Aquatic Animal Husbandry is a specialized but really rewarding career. My favorite part was that there were always new and different challenges to figure out, like parasite problems or behavioral issues, and I had such a huge and varied workweek that it was impossible to get bored. But it is not a high-paying career, so it is only for those who truly love the work, as one must sacrifice a lot of financial rewards for the field. To me it was worth it, though!

  8. Beautiful share! You speak for so many of us who have endured personal life changes, losses etc. I am so glad to hear that it’s okay to process what you are going through. I know personally, there is no way to the other side unless I do. I have had nothing like your catastrophic physical injury and health is such a gift. Your sharing has inspired me to continue grieving as and when I must, to continue and know that there will be an end to it. Many thanks. Also for finding my blog 🙂

    • Thanks Aurora! It doesn’t matter if it all happens in a catastrophe or a little at a time, we all get plenty of loss to grieve–I’m glad my loss gives me a window into others’ lives as well, and I’m happy to share anything I learn from it!

  9. It must be incredibly difficult,especially when so much of who we are is defined by what we do. I had a spine injury that decimated my career. I lost that piece of my identity. And I had to figure out who I was without my career. That was a very dark time. You are very courageous to talk about what happened to you and the grieving process.

    • Thank you Kourtney! It wasn’t easy to write but I think of how it would have been easier if maybe I’d read something like this before going through it, and I felt it was important. I’m so glad you appreciated it and I’m sorry that you had to go through something similar. We humans pick all the temporary stuff to indentify ourselves, and then we have accidents or get old or and it stops working and we have to figure it all out anew. At least you and I got this out of the way early, right? 😉

  10. I have been following your blog and learing a lot about your condition, but mostly learning about you. You are a beautiful writer – eloquent and crystalline. I am sorry about your condition but so proud of how you are dealing with it. Your courage and grit remind me of Julie. Thanks for posting Jessica.

    • Thank you Virginia for your very kind comment. It means a lot that you would liken me to your stubborn and gutsy sister; I’d be happy to have half her courage. Very glad you are enjoying the blog! I’m pretty pleased with how it’s going and it makes me feel like my experiences are of benefit to more than just me, so it’s really rewarding.

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  12. I’m trying to keep my current job but have been told they may let me go. CRPS is awful and has taken so much away so quickly. Your blog was wonderful I just hope I can get past this anger I have. I want to keep working but who will hire me? Its so frustrating

    • I think many of us end up starting our own businesses so we have the flexibility to adapt to our unpredictable pain. Others telecommute or find jobs where there is some flexibility of timing as long as the work gets done.

      Anger can be debilitating when the stress hormones released amp up our pain levels. I did a lot of work on my emotional health, and will of course have to keep working at it. I am currently reading How to Be Sick, and highly recommend the book if Buddhist philosophy interests you. It addresses envy of healthy people, being too hard on ourselves, letting go of the past, etc. Could be helpful.

  13. Thank you so much for sharing. I’ve been hurting with this issue for two years. I feel so empty and disconnected. How I miss myself and the dreams I had for myself. I will because of you start my grieving process and rid myself of the anger and hurt I’m bearing daily. I applaud you for your bravery hon. You are so kind. Please keep strong and continue writing. For now I’ll continue with Moist heat pads and warm baths. Surely takes the edge off the pain 🙂

    Gentle hugs**

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