I live with blindness, but it is not the hardest thing I have to deal with

A woman with dark hair sits upright on a bed, holding a bowl of food in her hands. The room is lit softly by a standing lamp. The desk next to the lamp has a rice cooker and several jars of food on it. A large window shows a dark cityscape outside.

What has been far more frustrating to deal with has been my stomach.

While in Uttarakhand on a research trip, I drank water that had not been filtered or boiled. This is not something I usually do, but if I had said no, the family I was visiting would have felt hurt. The following day — which happened to be a Sunday — I was getting intimate with the pot and basin of my hotel in ways that I could not have imagined.

What a day to fall ill in a city like Dehradun, with no doctors to answer my calls and most pharmacies either closed or under-stocked. Fortunately, I am a walking pharmacy, a habit that I have picked up from my mum who always has food, water and medicines on hand, and my sister, a doctor who considers caring for others her constant duty.

With medicines pumped into my system from my now depleted medicine pouch, I decided to fly out as I had planned, if only to get some reliable medical help.

Upon landing in Delhi, I asked for a wheelchair in addition to the assistance that I am anyway entitled to receive because of my visual impairment. I don’t generally ask the ground staff to push me on a wheelchair, but this time I needed to rush to the emergency health clinic at the airport and meet with the doctor.

My rapid exchange with the doctor, based on my confidence and knowledge of the treatment that I needed was not just a façade based on having Googled my symptoms. It was the result of years of dealing with my tummy and my body. Knowing what would help, I calmly allowed the nurses to insert the cannula into my hand and start the fluid medicines.

To distract myself, I did the thing that helps me — I called a friend who can usually tell when something is wrong, and he didn’t let me down. As a way to deal with things and force myself to believe what’s happening is not a big deal, I narrate incidents to my friends in a matter of fact manner. This helps me cope, one step at a time. But I was taken aback by the frustration and unhappiness in my friend’s voice.

He argued that I had fixed my tummy with an operation I’d had two years ago. I reluctantly forced my mind to return to that period. I had to remind my friend that the operation addressed a different illness, a cyclical vomiting syndrome. It didn’t change the fact that I had a sensitive tummy.

This conversation pushed me to come to terms with something that has been a sore point with me for a long time.

My friend’s disbelief isn’t unfamiliar to me. A weak tummy and a weak constitution, particularly when you look healthy and have the unstoppable spirit and energy of a child is, literally and figuratively, a pain in the ass. ‘You don’t look ill,’ is a phrase I have heard even when I’ve just been in hospital. This is the kind of thing I also regularly hear about my visual impairment.

I want to shout, ‘Yes, I don’t look blind, I don’t look ill, but what if you just trusted me instead of trusting your own estimation?’

I have always felt out of place among people my age, not just because of matters of maturity or sensitivity, and not so much because of my blindness, but because I look at my peers and wonder to myself, ‘If I got drunk at clubs and house parties all weekend, every weekend, if I ate rajma more than six times a year, or a block of cheese every week, would I really survive the impact?’

There are days when I wake up and all my plans go for a toss. All I can do is mumble an apology and hit the toilet or the bed. There are days when I can get lots of work done and others when I can’t because the food from the previous day’s meeting didn’t suit me.

As I spend nearly half of each month traveling for work trips, hotel rooms are temporary homes for me. I know people are surprised, shocked, and sometimes judgmental when they walk into one of my hotel rooms and find the desk covered with roasted snacks, nuts, ready-to-cook khichdi, homemade upma, and my famous electric rice cooker.

I smile proudly and show off my means of survival. Ingesting familiar, safe food into my system at least once a day is the way I am able to travel for work.

If I push myself too much or don’t sleep enough, my digestive system collapses. It’s not just my stomach that’s affected — this leads to back and shoulder pain, and impacts how much nourishment I can absorb. It dulls my brain, worsens my memory, and shortens my attention span. It is challenging when you especially depend on these faculties as a visually impaired person.

This photograph shows a mural of a woman with dark hair painted on a wall. She looks confidently and almost directly in the direction of the camera. She has several large dark pink roses in her hair and vicinity.

Credit: Maureen Barlin via Flickr, CC BY-NC-ND 2.0.

But when you’re disabled, people assume that disability is the bane of your existence, that nothing can worry you more. In my case, since my disability was acquired later in life, people often assume that it is a constant challenge.

I am not saying that acquiring a disability and learning to live with it has been an easy journey. But people don’t understand that having a sensitive stomach can give someone an equal amount of anxiety. And it is far more difficult to talk about these difficulties with my body than it is about my blindness. People find it hard to both understand the issue (talking about it elicits discomfort and laughter) and to let it be (they get offended if I don’t eat or drink much at their parties, for example).

Sometimes my condition will be used as a reason not to invite me out, or to ask me about it in sombre tones, as though my health is constantly deteriorating. It is these reactions that have forced me to either out my condition even when I don’t want to talk about it, or in some cases prevented me from talking about it even when I want to.

I can comfortably say that I am absolutely fine with my visual impairment. I know my limits, and I know how far I can push them. What has been far more frustrating to deal with has been my stomach.

My digestive system has an impairment, which flares up depending on my circumstances. I don’t know if this will ever get better, but what this means to me is that I own my body as mine, support it as much as I can and invest time in it, even if it means missing a fun trip in order to detox at a health centre, or saying no to a sumptuous meal.

I know that sometimes my body will hurt and be uncomfortable because of its condition but I’m also acutely aware of the fact that my organs and I are a family, a collective. If one member is suffering, or has a deficiency, then the entire family steps up to shoulder the stress together. A single impairment impacts the entire collective, ageing it, forcing others into roles that they may not like, or pushing them to simply endure it.

I thought of all of this the evening I was on a flight back home after the visit to the emergency medical health clinic in Delhi. My head was resting on the aircraft seat, my tummy still hurt, and there was a slight soreness on the back of my palm because of the IV drips.

I knew that just an hour ago, my heart rate was 124, my blood sugar was 80, I had less than one litre of water in me, and no food in over 28 hours. But my brain was still remarkably clear. Or was it my heart? I felt like I’d had an epiphany. I realised that my body is neither better nor worse than other bodies, or even its own past and future forms, but simply that bodies are diverse.

As far as I’m concerned, my blindness and having a body that sometimes needs more attention than usual are both parts of who I am. I would not like to label my condition either a disability or a chronic illness, because I feel that doing this would flatten the fluidity and diversity our bodies are capable of.

It took me many years to come to terms with having the body I have because we simply don’t talk enough about the diversity of our bodies — disabled or otherwise. Instead we pretend there should be a ‘normal’ and are quick to comment, judge, and discriminate when people don’t match this ideal.

This is something I learned twice over — once because of my disability and again because of my condition.

Nidhi Goyal is an activist working on disability rights and gender justice. Being disabled herself, she works at the intersection of disability and gender through research, training, advocacy, and art. She is the Program Director of Sexuality and Disability at Point of View and is the co-author of www.sexualityanddisability.org. Follow her @saysnidhigoyal.

Featured image credit: Alia Sinha