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Equality, Diversity and Inclusion

Ensuring that EMBL leads by example as a fair, diverse and inclusive workplace

From Able-bodied to Something Else

I never would have called myself an athlete. Yet, I relaxed by swimming a kilometer or two and I often travelled to conferences with my running shoes so I could explore cities in early morning pre-conference runs. In August 2017, I finally committed to achieving my long standing goal of climbing Kilimanjaro and by mid September, I was cross training in preparation for my trip to Kenya in early 2018.  But that all changed one morning.

Erin Tranfield

Head of the Electron Microscopy Facility at Instituto Gulbenkian de Ciência

A few friends and I met up with the plan of riding horses along the beach and then having lunch in a nearby town. It was supposed to be a restful day of playing tourist in our own backyard. Instead, I ended up in the hospital with a pulverized vertebrae, a herniated disc, and multiple other breaks, cracks and unwelcome injuries. I had never done more than get stitches at a doctors office before that day. But in one day, I rode in an ambulance (two in fact), had a CT scan, a MRI and I slept my first night in a hospital (the first of many) and the next day I had a 5-hour surgery to try to reduce the damage to my spinal cord. 

My focus moved from training to climb Kilimanjaro, to hoping I would walk again. If I had known how grueling, humbling and painful this journey would be, I would have probably just given up then. There are no words to really describe what I went through, what was done to me to try to help me recover, and the future ahead of me as a person now with a permanent disability.  

4 years later, I still do not feel my feet and large areas from the knees down. This is helpful when I stub a toe, or the floor is cold, but in general, not feeling your feet is a problem. Learning to walk again was terrifying. How do you walk on feet you do not feel? How do you balance?  How do you drive? How do you avoid those sharp rocks that could cut your feet?

4 years later, I can not control my calf muscles. Various other muscles in my legs, hips and feet are non-functional or very weak. This means I walk funny. I can not stand on my tip toes, or even lift my heels off the floor. If I lean forward, I can not maintain my balance easily. How does one climb out of a pool if you can not climb a ladder? Can I scuba dive again? How do I get things on the top shelf when I can’t climb a step or jump. I can’t wear sandals or flip flops because my toes no longer hold shoes on my feet.  I really miss fun shoes. This seems like a silly thing, but I really loved shoes.  

4 years later, I still have muscle spasms during the night and I have not slept more than 3 consecutive hours since my accident. In a good night, I get out of bed 3 or 4 times. In a bad night, my body wakes me up every 45 minutes because parts of my vegetative system are broken as well. Do you know how hard it is to function and exist like this?  In an 8-hour night, I am lucky to get 5-6 hours of sleep.  And this means I am always tired.  Always.  

4 years later, if I walked into a room, you would probably look at me and wonder how I hurt my foot and why I walked a bit slowly, but you would never know the rest. In these 4 years I have moved mountains to learn to function. I have dedicated more hours to my recovery than I can ever count and I will need to continue to do that for the rest of my life. Everything I do takes longer than it did before my accident, which means I have almost no “free” time in my life these days. I am aware I am not the employee I was before, which means I often work longer than others, to try to compensate for my shortcomings.  But if you met me, you would not see the fights that I live every single day. You will rarely hear me complain about any of this.  I just get on with it.  

My aim in this reflection is not to ask for your pity. It is instead to give you a snapshot into my reality so let me share with you a few observations I made as I went from able bodied to whatever I am now with the goal of giving you a bit of insight:

  1. If I ask for help, it is because I desperately need it. I do not ask for help until I have exhausted all other options. If I ask you for help, please take it seriously. 
  2. I need more time for things and there is really nothing I can do to be faster. 
  3. Every day is a new adventure. I never know how I will sleep, and subsequently how I will wake up. I prepare for the worst, hope for the best, and try to smile regardless of what happens. But this means future planning is terribly hard.  
  4. I really appreciate it when people accept me as I am, and are willing to patiently help me along the way. I promise I am aware of how complicated I have become, yet I am so grateful for those people who just roll with whatever is going on and are not judgemental when things are not going well. 
  5. I would rather that you ask me what happened then silently avoid the topic, because I see the strange looks people give me. 
  6. As much as you might try, I do not think you can ever understand how hard this has been. I thought I was kind and empathetic before my accident, but this experience has taught me that despite my very best intentions, I also had no idea how challenging being disabled would be. 
  7. The best things people do for me today are to accept me as I am, to be patient and kind as I struggle, and to appreciate that some days, despite all my planning and efforts, I just can’t be the Erin I want to be. 

Today, I do not seek prizes or medals or much fanfare, but if I am honest, I am proud that the person within this damaged body, has a spirit and courage strong enough to conquer mountains far higher than Kilimanjaro, or even Everest. 

Lastly let’s end on a happy note – I love when people celebrate victories with me, so let me share my latest victory. In October I did a 1500km road trip with my Mom and managed all the driving and navigations without too much drama.  It seems so small, but this return to being an explorer, a traveller and a driver is huge for me.  A new step forward in my constant journey towards being “normal” again. 

Tags: accessibility, disability, equality, science

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