“What I learned from going blind as a single mother at age 29”

YoIn April 2009, at the age of just 29, I suffered my first stroke. Six months later, in September, I suffered another. That same month, in November, when I returned to work, I was driving home one day and noticed that I couldn't see the road signs properly. I was wearing glasses at the time, so I assumed that my prescription had changed. I made an appointment with the optician.

They could see something in my eye and sent me to the emergency room. When they examined my eyes, they saw that my rods and cones (the light receptors in the eye) had been affected by the stroke. When they did more tests, they saw that there were many different diseases attacking my eyes. The central cells were gradually dying. The doctors predicted that by the age of 40, I could become completely blind.

Despite all the diagnoses, I was told that although my central vision would continue to deteriorate, my peripheral vision should remain intact. But in 2013, I started to notice that some areas of this visual acuity were disappearing as well. That’s when my driving license was taken away. Over the next four years, it was a progressive deterioration; all my central cells were dying. On the first day of November 2017, I woke up with very, very little vision: no central vision and a minuscule amount in the upper left corner of my peripheral field. I went to see my ophthalmologist that same day and she confirmed that all the cells had died. That was it. That was now my vision. That’s when I was registered as blind.

I was a single mother of a nine-year-old daughter when it all started. That was the scariest thing: I was quite naive and thought my daughter could be taken away from me. I was also afraid of losing my job. So I hid what was happening from my employer for four years. I only told them when I was registered as visually impaired in 2013. I really thought I would be fired.

When I finally opened up, they were amazing. However, at first, all I could think about was that I was a single mother with a mortgage. If I lose my job and can't take care of my daughter, I thought, what's going to happen? It's a really scary situation.

Because my vision loss was gradual and I'd been told I'd most likely go blind by age 40, I had the mindset that I would be the best blind mom in the world. I practiced doing everything around the house blindfolded or with my eyes closed—I learned how to cook, chop, prepare food, clean, put on makeup. I was prepared. But the reality of waking up without your sight is very, very different. You expect it, but it's not like that. Every day I thought, “Oh, I'll wake up and tomorrow I'll have my sight back.” But every day that went by and I didn't get my sight back, I thought, “Okay, you have to get to a point where you accept that this is your life. That's a really hard thing to do.”

Going blind as a single mother was a challenge, but we never let that stop us from doing the things we want to do. We adapted. My daughter is an amazing person, my absolute rock, and we have an amazing bond. When she left for college, the hardest thing was her not being here, not me being blind. I feel like, really, of all the things in my life, that was the hardest to process and accept: not going blind, but my daughter leaving and being an empty nester. I currently live with my partner, and my daughter has moved back in with us, and my partner has two kids who come and go as they please. We are a very relaxed, fun, happy family. No two days are the same.

One of the things I found hardest to adjust to was walking everywhere instead of driving. I had been driving since I was 18, and when you get your driving licence taken away you feel like you've lost all your independence. Suddenly you're dependent on public transport and lifts – trying to get my daughter to school and myself to work on time was a struggle. So was going to the grocery store and having to carry all those heavy bags on the bus… When you're registered as visually impaired you're not entitled to any benefits. So even if you're not allowed to drive, you have to be registered as 'severely visually impaired' in order to get a free bus pass. It's a huge expense for a disabled person, something people often forget – you know, the taxis you have to take every week to do the shopping or to get to the parents' meeting.

It's really hard sometimes. Even now, I still find things that make me think, “I have to change the way I do that because I can't see.” But it forces you to think differently, which can actually be a good thing, because not many of us do that unless we're forced to. Every day, I'm forced to think differently and adapt to a new way of doing things.

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That being said, it's the last thing you want to think about when you're going through it, like trying to figure out how to get a spider out of the bathtub when I can't see, because my daughter is afraid of spiders and doesn't want to go in there. It's hard, but you figure it out. You move on because you have no other choice.

It took me years to accept that I was going blind. As I got worse, I didn’t go out much because I felt like a burden on everyone. Not that anyone ever told me that, and, looking back, I kind of regret that big part of my life where I didn’t do anything. But then, between 2017 and 2019, I did a lot of work on accepting what had happened to me and started using my cane more. There was a week where I stood on someone’s dog, fell off a bus, and almost got hit by a car. That’s when I realized I needed to start using my cane. And the day I started using Rick the Stick (yes, I named him!), it was like my life changed. My biggest regret is not doing it sooner, because I felt like I got my independence back. I felt like I could start being me again.

Some people are very ignorant about blindness. The moment you say you're blind, they automatically think you can't see anything at all. Many people don't realise that less than 10 per cent of people registered as blind literally see nothing. The rest of us have some colour or light perception; we can see shapes and shadows. It's a spectrum – not every blind person is going to be the same. It's OK to ask questions about it, but what's not OK is to judge and assume. I was once accused of pretending to be blind because I was using a mobile phone. That kind of accusation boggles my mind.

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Another mistake: Please don't grab me when I'm getting off the subway! People often grab you and drag you, and it's quite alarming. I think I'm being mugged or something. It's okay to offer help, but do it the right way. I always tell people that if you want to help someone, announce yourself. If I need help, I'll gladly accept it. If not, I'll just say, “No thanks, I'll take care of it.”

I think that going through something that changed my life has made me a better person. I appreciate life a lot more now than I did before. I have always been a very empathetic and caring person, but I think I am even more so now. I am incredibly grateful for all the opportunities I have right now; to be able to use my social media to help people who are also going through vision loss and to show the world that having a disability doesn't stop you from doing things.

I get a lot of direct messages on Instagram and it's a wonderful community to be in. Together, we support each other and share our tips and tricks. Being able to have a positive impact on one person is all I ask for in life.