CHANGE (Part 1)

Once upon a time I felt I was pretty good at adapting to life. I have a mantra that I have carried with me since I was about 12 years old: The only constant in life is change. It has served me well, for the most part.

Change is the one thing that I know will inevitably happen in life. I’m a mom of four. Kids grow. As parents we find that the moments we are watching the most, the less we see it. Honestly, when was the last time you realized one of your kids had gotten bigger? Generally, it happens after they have been somewhere for a prolonged period of time and you haven’t seen them for a while. I will say that as a household with kids who spent time with their Dad every other weekend, I was blessed to notice their growth spurts more than I did the kids who stayed with us all the time. It would seem like they were only growing on those weekends they were gone.

Pictured below: Julie's family

Change happens when we least expect it. My eyesight is the same way. Specifically, when I’m absorbed by the mundanity of everyday life; making lunch, stepping outside, walking into a room, and bam, there it is, the moment I notice it. The difference/deterioration. The change.

The moment manifests itself in a sudden game of spot the difference. Where there once was a shape of a person or a full face, is now replaced by dots of darkness or a column of flashing lights that sparkles over their profile. A new squiggly line in my vision that obscures what was once a crisp view of a loved one’s face.

The degenerative nature of my eye condition has always been one of oddly rapid progression. I expect it. But, contrary to common misconception fueled beliefs, I don’t wake up every day and think about the fact I’m vision impaired. So when change does happen in more of a dramatic way, it can feel daunting.

Despite the fact that I’ve experienced deterioration over the past few years, it isn’t something I’ve acknowledged when going about my routine, because it’s normal, it’s part and parcel of my life as a vision impaired person. But there are those days when it hits harder, when I find myself saying ‘I can’t see that’ more often, when the weight of the next stage of deterioration squashes a blurred shape I could once see into the tiniest impression of itself, is now invisible in my view. It’s this sudden dwarfing that catches me off guard, spinning the anxiety laden plates at a dizzying pace that’s hard to know how to balance. It sounds very dramatic, but this is a very accurate representation of how I’ve been feeling recently, and during other, more noticeable, moments of deterioration.

You see, losing one’s eyesight is a peculiar thing. There have been times (a lot of times) when I have cocooned myself in the naivety of it all. Times when I’ve convinced myself that it isn’t as bad as it seems, moments when I’ve tried to struggle to see something because I could (in my blurry view) only a couple of months ago. But the truth of the matter is that it can do more harm than good, so too can disregarding the effects of what I’m truly feeling in order to try to go about my days in the same old haze.

(The above picture is a representation of how I eyes see the world on a bad day. Tomorrow this may be the norm. Eventually I will only have a peripheral view.)

AMD (Age Related Macular Degeneration) is the gift that keeps on giving, or taking in this instance but that doesn’t have quite the same ring to it. It does mean however that I haven’t yet begun to delve into the depths of the biggest bout of deterioration I still need to experience, and there are certain things I find myself doing in order to best deal with all the change yet to come.

Something that has helped me is being able to supplement the loss with a reminder of all the things that I’ve gained because of my vision impairment; the friendships, the opportunity to share my experiences in the hope of helping others, the chance to work with some amazing people. It all goes a long way in terms of positioning me back on solid ground when I’ve felt as though it has been crumbling. I have also been taking the time to feel the feelings of loss, isolation, and sadness in a healthy way. Finding those who allow me to talk through my experience without judgement. So many emotions to go through before I am at a place of okay-ness. While in the meantime, having to be okay enough to function in the world daily. It is a weird place to be.

FEELING ALL THE EMOTIONS (Part 2) in the next post...