Sharing Bad News In the Social Media Age

“I was diagnosed with advanced glaucoma in June of 2018. Close friends and family were told very quickly, but what do you do with old friends, acquaintances, colleagues and social media friends?

I went through treatment without telling many of these people, but as things got worse it seemed something had to be done.

I’m not much one for subtlety, so in March of 2019 I chose to just blast it on Facebook for all to see. I wouldn’t recommend this approach to everyone, but it was the best for me.

Below is the post I shared which began my public journey with vision loss.

Cheesy, maybe, but i’m glad there’s a blind superhero out there and he’s bad-ass (well, as long as he’s not portrayed by Ben Affleck). [image by Scott Kolins]

I don’t often post on Facebook, but when I do, seems like I do it in a big way.

Some have noticed I post less, and take fewer pictures.
I thought, once again, it’s better to share information bluntly and quickly.

As of last week, I’m on indefinite medical leave due to advanced vision loss.

I’m sure there are a few WTF reactions, so I’m going to provide answers to some anticipated FAQs.

1. Are you blind?

That depends on who you ask. There is a wide range of people who get squished under the label ‘blind’. There are people who are partially sighted but legally considered blind due to the narrowness of their field of vision or amount they can see. Most people who are ‘blind’ can still see something, and it is only a smaller percentage who are blind-blind, as in see nothing. According to some groups I’m legally blind, according to others, I am in the less serious ‘visually-impaired category.

2. How ‘visually impaired’ are you?

My vision in my right eye is pretty crap. It lets me see shapes colours and gauge depth, but not much else. Luckily my central vision in my left eye is better allowing me to appear to function like a regular/normal person, at least for short periods of time.

3. Will you colour match your socks to your white cane?

I do have a white cane. White canes come in three categories. 1) Identity canes 2) Guide canes and 3) Mobility canes. Identity canes are just there to say ‘hey I’m visually impaired’, guide canes are a bit beefier and allow you to prod around a bit if needed, and mobility canes help blind people to navigate the world.

I don’t actually use a cane most of the time, but I carry a mobility cane with me in case I find myself in an environment where I might need to identify myself as visually impaired.

I don’t plan on colour matching my socks to it. I have, however, promised my sister Lydie that if I start using it more, I will do so as a boss!

4. Did you lose your vision saving someone, and in the process get covered in toxic waste, thereby receiving super human abilities in the process?

Unfortunately, I did not. I was diagnosed with glaucoma, which is high pressure in the eye that damages the optical nerve. The damage is permanent. Treatment hopes to stop or slow vision loss with eye drops, laser or other surgeries.

5. When did this happen?

I would trace the first signs back to winter 2018, but I was diagnosed in early summer 2018. Glaucoma has a nickname of ‘silent thief’, as in by the time you notice it, your vision has already declined quite a bit.

6. Do you still take pictures?

I hope to, but obviously photography has gone on the back burner for me. The idea of sitting in front of computer editing pictures does nothing for me. I will probably try taking pictures with a tripod and film camera so there is less for me to do, but this is definitely going to slow me down and change the way I do many things.

7. Can you still mountain bike?

Well, a few weeks before I was told of my condition, my brother took me to test some bikes at Whistler village. So I like to tease him and say that my mom must be furious that Jacques took his ‘poor blind brother’ down some Whistler trails. The truth is that 
I’m glad he doesn’t treat me any different, force me or stop me from doing what I love. Admittedly I’m much more aware of my limitations now. I gave up motorcycles quickly. There’s no way I’m going through traffic on a motorcycle with one eye and poor peripheral vision. I can give up cars too. But I’m going to stubbornly keep biking as long as I possibly can.

8. Why didn’t you tell us?

I’m fiercely independent. I do not like asking for help. But shit, 2017, SJ died suddenly. That was rough. One year later the universe decided I had handled that well enough to take on more. It hasn’t been easy. It’s nothing personal, but this was something decided to keep pretty close to the chest while I decided on how to move forward.

9. Is this a joke?

Nope, I shit you not.

10. What next?

Well, after continuing to work as best I can, and getting treatment, and talking to family, I’ve taken an indefinite medical leave from work. A big thank you to those who have seen me through the last year, and two huge thank yous for my brother Jacques and his partner Sara who have selflessly offered to help me through the next steps. As someone who wants to do everything by myself, admitting I needed help was one of the most difficult moments in my life. Having the support of family and friends has been invaluable.

So yeah… I think that’s good for tonight.