On doing a PhD with a disability

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So here I am, researching dolphin communication at a treehouse laboratory in a lagoon at the edge of the Negev desert. I’ve made some cool discoveries and presented posters about my research at two international conferences. I attend classes, teach other classes, and am writing two research articles for publication. I promise I’ll talk about the dolphin research in my next entry. This entry is written specially for two groups of people:

  1. You who suffer from the mysterious, incurable condition known variously as Chronic Fatigue Syndrome, Fibromyalgia, and Myalgic Encephalomyelitis. You, who grieve for the person you once were, and whose dreams feel out of reach.
  2. You who see me as an inspiring example of someone who once had CFS/FM/ME and overcame it through sheer determination.

It was a shock to learn that I’m used as an example to offer victims the hope that one day they might recover. Everyone with this condition is occasionally told that someone has a friend who used to have it, who now does amazing things. We’re told that, if we really wanted to recover, we’d be doing the last thing the friend did before they did the Amazing Things. So let me clear this up: I DID NOT RECOVER. Like most sufferers, I just put a great deal of effort into appearing Normal in front of you. You’ll have noticed that you don’t see me very often – there’s a reason for that. When you don’t see me, the chances are that I’m in bed. When you do see me, I don’t act sick, because I want to have a nice, normal time with you. So thank you for being inspired by me – but please, don’t use me or anyone else as an example of recovery. You don’t know our lives. If you want to help someone with M.E., it’s better to ask them how.

I’d keep the details about my health private, were it not for an animal biology student called Kathryn. Our BSc university had not had to deal with a student with M.E. before me. Kathryn is their second one. I am writing this for her, and for students like us. I’m writing it because I don’t have a disabled biologist in whose footsteps I can follow. Maybe I can be that biologist for someone else.

Able-bodied people speak of determination like that’s the key to success; but it’s simply not possible to ignore M.E. and push blindly through it – because then we just collapse and we’re stuck in bed and we can’t do anything. Instead, we formulate tricks and strategies; we take calculated risks with our pain and exhaustion, for which we factor in preparation time and recovery time. Being a student with M.E. is really only worth it if we are genuinely in love with our subject. It’s not determination that gets us there – it’s love.

Mind you, we do have some secret advantages over Normies: the three superpowers of shame, narcolepsy, and worthlessness. Ta-daaa! Our shame about looking lazy counteracts others’ procrastination time, meaning we don’t tend to fall behind. Sometimes we’re even ahead! Falling asleep over our work all the time settles things into our memory more efficiently. And when we’ve lost everything and our lives are worthless, then we’ve got nothing to lose, so we might as well do the Amazing Things. See my phone wallpaper:

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Source: the delightful Hyperbole and a Half

It’s always difficult to know how much to tell people about my disability. I tend to keep it strictly need-to-know, which is to say, if it’s going to affect someone else, then I’ll tell them about that one aspect that will affect them. If I say too much, people start saying I mustn’t do things, for Health and Safety reasons. I have enough obstacles in my life without people getting their knickers in a twist about my personal safety. If I’m doing fieldwork at Dolphin Reef, I’m in a safe enough place to push myself and then rest up until I’m functional again. My condition is not dangerous – it’s just debilitating. Able-bodied people don’t perceive the difference.

The fieldwork is my most gruelling activity, but also the most fun.  It makes me feel like I’m living my dream. I stick a hydrophone in the water from a floating boardwalk, and switch on an attached recorder that records all the sounds made by the dolphins below the surface. I then climb up to my lab balcony with binoculars and make intensive observations about everything the dolphins do and everything that happens around them. Eilat is on a migrational flight path for numerous bird species, so I’m accompanied by all sorts of feathered friends, from hummingbirds to guillemots.

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During my first year, I made recordings at all hours of the day and night. I took a sleeping bag to the lab and interspersed periods of sleep with periods of observation. Staying awake as 4 am approached was almost impossible, but one night I had some help. I was sitting out in the dark, listening for the sound of blowholes, and watching for the ghostly shapes of the dolphins drifting past the foot of the tower. Suddenly, a shadow next to me gave a blood-curdling shriek and I damn near fell out of my chair. A peacock was roosting there, and had randomly woken up and decided to let me know. I was very wide awake for quite some time.

These night sessions severely affected my ability to walk, and one morning, I had to lie on the lab floor for seven hours, waiting for my legs to work. When they finally did, I threw myself down the ladder to the toilet below, and vomited copiously. The advantage of working alone is that nobody sees that shit. I’m nervous about mentioning it now, but now I have a field assistant, so, yay, Health and Safety. I think it’s important to show the reality to anyone who follows after me (and I hope you do).

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When I agreed to do this PhD, I drastically underestimated how hard it would be to live alone in a foreign country with no carer. I recommend not going to this extreme. Part of my error was because I had been told that the income for doctoral students in Israel is a minimum of twice what it turned out to be. For most universities, this is correct. But it meant I came to Israel with an assumed budget that would allow me monthly massage therapy, a personal assistant, taxi travel, takeaway meals, and regular trips home to the UK. In fact, after rent, bills, groceries, buses, and the inevitable monthly emergency, there’s nothing left. I handwash all of my laundry and dishes, and, unable to afford medical insurance, I try not to need the doctor, ever.

I could not have got through my first year without Dobbin, my faithful old mobility scooter.  I live at the top of a hill, and all the things I need are 1 km away in various directions: the bus station, the big cheap supermarket, the pharmacy, the post office, the dentist, and the desert.  The average distance I can walk in a day is 1 km, and I can’t carry shopping bags home. Being old, Dobbin often breaks down. I took her to be fixed three times, by dismantling her, loading the pieces into a supermarket trolley, and wheeling her to the scooter-fixing guy 1 km away. He charges a lot of money to do things I could do myself if I have the tools, so the next time her motor broke, I instead got help from a friend at the Dolphin Reef maintenance workshops, then eventually I started fixing her myself.

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The lovely Wafi, of Dolphin Reef, replacing Dobbin’s motor and braking system

One night, someone tried to hotwire Dobbin by chopping through her main cable and shorting the circuit, and I had to wait for a day when I had spare energy before I could fix her. With relief, I then ran some 1-km errands and took her for a trip to a local desert park. I love the desert with a passion, but can only get onto the edge of it once every couple of months. (I don’t think I will ever get used to being held back from the things I love to do because I am a crip. The less said about not swimming with dolphins, the better!)

So I locked Dobbin outside the park gate, went for a blissful desert wander, came out – and Dobbin had been stolen. Getting back home was an interesting experience. Now my world has become very small indeed. All my shopping comes from the corner shop, which is limited and expensive. Everything else except travel to the lab requires a taxi, so I’m mostly avoiding everything else.

But, here’s the funny thing. Every year of my previous degree, I hit a point at which I was ready to give up and drop out. This degree is much harder in terms of basic survival, and yet I don’t expect to drop out. I expect everything to keep being really hard, and really frustrating. I expect to feel physically ghastly most of the time. I expect to be lonely, misjudged, and misunderstood. I expect to hit walls, and cry, and be judged for crying because people don’t know the reasons. And that’s all okay, because really that’s the background stuff. I’ll experience those things wherever I go. In the foreground, I have passion: for discovery, for learning, for teaching, for dolphins.

Also, I have a cat.

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7 thoughts on “On doing a PhD with a disability

  1. Awesome.

    Awesome piece of writing. Awesome person, doing very cool stuff, and being awesomely cool about it.

    I am in awe (and a little bit in love.)

    Like

  2. Holy Moly! Thank you for being trusting enough to say this. It reminds me of when Chrysler was dying and everybody had a sure cure which lsft me feeling guilty and ashamed when he died anyway. There is no solution sometimes. Just cutting your coat to fit your cloth. Bravo. I am sure the cat is pleased also.

    Like

  3. Thanks for sharing this Tan, I am speechless with admiration for the way you handle your difficulties and achieve what you do.

    Like

  4. Go Snaily! It sounds much harder than I imagined but I know you love the results and that’s all that matters. If no one has started a fund for a new scooter I could organise if you wish, esp. since you managed to perform the transactions that enabled “my” refugee to get his immigration visa. Hugs. <3

    Liked by 1 person

  5. You’re wonderful and I love you and lots of other people do, too. And yes, you are an inspiration, even to those of us who’ve dodged the bullet.

    Like

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