Hi! My name is Catherine Colgan. I’m an emergency department nurse. I am officially three months into my VSS onset, so I am still in the beginning stages. I have found great comfort in reading others’ stories who are further along, so thank you!
I am still awaiting a neuro-ophthalmology appointment to get a true diagnosis, but I feel quite certain this is what I have. I have visual snow, which presents for me like transparent static, floaters (I can’t even look at a bright screen now without those guys showing up), BFEP, and trailing. I also have tinnitus, although I developed that more than a year ago.
Two years ago, a life-changing trauma event happened in my life, and part of me feels that VSS is my body keeping the score – but really, I suppose I won’t ever know; it also just could be random. The first time I realized everything around me was flickering was frightening – what proceeded was a baseline of anxiety that stuck around for about four weeks.
In that time, I did a lot of research and saw opticians, which gave my eyes the all-clear and have since referred me to ophthalmology/neuro-ophthalmology. With my background, I am trained to pick up red-flag symptoms, and I don’t appear to have any – so I suppose the acceptance process for me has come quicker, also for the fact my symptoms do not seem to be as severe as others.
It has felt akin to a grieving process; you wake up thinking about it – you go to sleep thinking about it. You feel sadness/anxiety about it. However, I notice this is all getting better. I have moments of ‘oh no – what if it gets worse?’ Although I am finding that I recognize those thoughts as irrelevant to my present moment.
In a way, I feel that VSS is training me to be more mindful of my present moment. It is a constant reminder for me to look after myself – mentally and physically. I wish more was known, and that’s why I am so grateful to VSI for the work that is being done.
I have found that my main coping mechanism now has been getting out of the house and realizing nothing in my life has had to change for this – it is just something I have to adjust to. I also did not keep it to myself; I told my partner, family, and a few close friends for support.
Our resilience as humans is so strong, so I feel confident and hopeful this will become something I just live with and perhaps can maybe help other people who are struggling. Even better if in the future we found something that got rid of it – but for now, I will strive for full acceptance!
