Tag Archives: Working

Disability and Grief

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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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CRPS and Working: A Personal History

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I thought today I’d talk a little about my experiences with working and having CRPS. First thing you have to know about me is that I am as obstinate as a mule, and I’ve put that to work for me in my career before with positive results. So, my default reaction to something that makes work more difficult, or even threatens my career, is to stubbornly work harder at finding a solution, often exhausting myself in the process. Before CRPS, this tactic had never failed me.

When I sprained my ankle, I was working in my dream career field. I was an aquarist, which basically means I was a

Specimen of Acanthastrea lordhowensis photogra...

zookeeper for fish (and other aquatic animals). I had attended two additional years of school for this career after my Bachelor’s degree, and had interned at an aquarium in Spain, and then worked in New York City for several years before moving to Guam for a new aquarist job with a greater range of job duties. One of my favorite parts of my aquarist job in Guam was the health care side of fish keeping, in which I had a lot more responsibility since there was no dedicated veterinary staff on site.

Even getting into aquatic animal husbandry was a benefit of some obstinacy on my part: I was a person allergic to the dander of every animal with hair, fur, or feathers. But animals were my passion, and I harnessed my stubbornness and found an animal husbandry career that didn’t aggravate my allergies because the animals were all wet!

So here I was, in an extremely physical job, with a sprained ankle. I was put on “light duty” and kept myself busy doing paperwork, advising or overseeing the people assigned to take care of my assigned animals, taking on extra duties in the laboratory doing water quality testing and measuring treatments, and even ended up helping with billing and stuff for the curator, working in the education department. and doing some program and exhibit design. Initially were some parts of light duty that were interesting or enjoyable, but I missed my job and having to try to direct someone else in doing it was hard. But light duty was supposed to be temporary. And my ankle kept hurting more and more, and I kept returning to the doctors looking for not only an explanation of why the pain was increasing instead of going away, but for treatment for my pain.

The first couple doctors responded by immobilizing my ankle further and giving me painkillers. I went from a wrap to a brace to a walking cast to crutches and a solid cast. I spent almost two months in a wheelchair. The stress of constant, ever-increasing pain made me increasingly susceptible to other stresses. I worried constantly about whether what I was able to do for my employer was enough for me to not lose my position. The pain medications combined with the pain

Wheelchair

made it increasingly difficult to calculate, to concentrate, to remember–to keep from breaking down in tears. My supervisor and most of my coworkers were extremely kind and supportive, but the company itself was going through some stressful changes and my ability to cope with the additional stress was minimal.  I was on light duty for almost a year. One of my light duty assignments took me out of my department, and I worked as hard as I could, increasing my hours. getting more and more stressed, and in more and more pain. I finally begged my doctor to return me to full active duty, forgoing medical protection of myself to get back into my department under my supervisor’s protection.

What was my home life like during all of this? What home life? I got up, went to work, sometimes there was PT or an appointment, went home, laid down in bed with my computer and TV. If I ate, it was because my sweetie brought me food. He washed all the dishes, did all the cooking and shopping and housecleaning and laundry. I couldn’t even take a shower without him. He’d drive me to work and pick me up to drive me home. Sometimes the old elevator to our 8th floor apartment stopped working. He bought me kneepads and I would cry in our car and then crawl up 8 flights of stairs on my hands and knees while he encouraged me.  I had some friends that would pick me up and  take me to our weekly game night and then drive me home afterward–that was the only thing I did outside my house that was not work.

When I got diagnosed, the doctor assured me there was no reason why I wouldn’t be able to keep my career.  Yet the constant pain, even with the new medications, kept increasing and increasing. I wasn’t managing my pain, I was just doing my best to medicate it away as much as possible and ignore the rest of it. It wasn’t working. And, as things got increasingly stressful at my job, I realized that doing this work was making me worse. It was a difficult decision to make, but I decided I needed to find a less stressful career. I went to work in a laboratory. Not working at all was not an option I was even willing to consider.

Chronic pain makes your brain shrink. I’m not saying this metaphorically, it is a scientifically proven fact that the

AAAS brain

human brain in constant pain atrophies away, something like 10% loss in mass–a huge amount! So I had pain, stress from pain, stress from trying to learn a totally new job, stress from what working was doing to my home life and relationship, and brain shrinkage. And yet, I was able to keep up with it for a while.  My new boss understood chronic pain and was flexible. I bought a small foam mattress, and would go lie down in my car for my lunch break. I moved to a nearer apartment with just one flight of stairs. I started taking a 2-hour break and going home for lunch.  I stopped going to game night–I was just too tired and in too much pain to get out of bed any day I didn’t go to work. Nothing helped enough. I had more and more trouble getting all 40 hours done in a week, and more and more trouble not getting emotional about every little thing. My pain continued to increase.

Finally, I had a big talk with my sweetie. All my friends had been telling me to stop working for quite some time, and we decided we could survive if I quit working, at least for a little while.  To be honest, even if we hadn’t had a way to scrape by, I would have had to stop working soon anyway, because I wouldn’t have been able to keep dragging myself out of bed and going to work. It was a miserable decision to have to make, but it was the only choice I had to salvage anything out of my life and keep myself from getting worse.

At first, I thought it would only be temporary. As I settled into my new “job” of seeing doctors, doing various types of therapy, and taking care of myself, I slowly figured out what it took to make life tolerable. To have the energy to get up and at least reheat my own lunch, make sure I get the walking that I need not to keep my position from progressing, and generally to take care of myself. And it finally sank in that it will be a long time, if ever, before I have enough energy left over from simply living with this pain condition and all it entails to be able to work again. Taking care of myself takes a huge amount of work, and even now I don’t do it all–I have my sweetie and others who help me. So I applied for Social Security Disability. And a couple months ago, my application was accepted. While it’s not a lot of money, it’s enough that we can stop using up my sweetie’s emergency fund, and I can pay for my treatments and such. And so I have accepted that my CRPS is a disability. There just is no amount of obstinacy that can indefinitely ignore a chronic pain condition.

Now, just because CRPS is a disability for me and for some other people I know, it doesn’t mean that nobody with CRPS can work. Some people may have a less severe version of the condition, and/or have better success at managing their pain. Some people may be able to work part-time and still maintain a tolerable quality of life. There’s a range amongst CRPS patients, like in many other conditions. What’s important is that the patient is still able to have a life AND work effectively. That’s not possible for me at this time in my life. I hope it is possible again in the future, but for now, my job is taking care of myself, and I’m going to do the very best job of it I can!

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