What Losing My Sight Has Taught Me
I have now been vision impaired for just over five years. Looking back pre-Stargardt’s, I was a different person. Not necessarily better or worse, just different. The changes in the past five years can probably be attributed to getting older although losing my vision has played an enormous role. Here’s what I’ve learnt along the way:
I am a really impatient person. I hate public transport because you can get places faster when you drive. I feel that standing still waiting is such a waste of time when you can be moving and on your way. My impatience worsened in my late teens, early twenties. I suspect this was due to the fact I could rely on myself to get around and I always wanted to be doing a hundred things at once, which somehow I managed.
Giving up driving was one of the hardest things for me personally. Not only was this losing my independence but also my control and security. This played a major role in me experiencing anxiety. As I learned to get around on foot, my anxiety grew to the point where I didn’t want to go anywhere. My impatience contributed to this. I wanted to get places quickly and if it took ‘too long’, which depended how I was feeling that day, I would have a panic attack.
A way I learnt to deal with my anxious feelings in this situation was to become present and be patient. I taught myself that I have no control over time and to be more aware of the process of getting somewhere instead of worrying solely on the outcome. I learnt to be patient when crossing the road (since being vision impaired it takes so much longer to cross because you have to rely on your hearing and when the road sounds clear). I did this by taking a big breath and noticing what was going on around me using my other senses; smells, sounds or even a conversation I may be in. Instead of focusing on getting across that road as quickly as possible, I took in my surroundings.
My patience has not only improved when out and about, but also with simple tasks like waiting for the kettle to boil. Although, I still get impatient when people are late to pick me up (please note friends and family!)
Acceptance is a tumultuous process. I can say that I now accept my diagnosis and situation 99% of the time. There is always those moments when I still get angry or upset with my situation, but they are becoming less frequent and less intense emotionally. It has taken me over five years to get to this point and each person is different. If it takes longer, it doesn’t mean you are doing something wrong or are ‘weak’, everyone’s situation is different and everybody copes differently.
Not only have I accepted my vision, this experience has taught me to be more accepting of other things that occur in my life, especially those outside my control. As you have probably picked up if you read most my posts, I am definitely a control freak! Having to accept such a drastic change in my life has made me more willing to accept other things.
As much as I don’t like to admit it, at times I would find myself judging myself or others. It is human nature to compare yourself to others and vice versa. I have always tried my hardest not to judge anybody and with my background in psychology and my tendency to always want to help, I usually remain non-judgemental.
Having this condition has opened my eyes to a whole different aspect of being judgemental. It’s not simply judging a person’s appearance or personality, but judging their experience. I don’t like when a person tells me they are ‘sorry’ for my experience or ‘feel bad’ that I have to go thought this. I know this comes from a genuine place but when it’s said to you repeatedly when you are trying to overcome a barrier it is not helpful. I always say as humans we need to be more empathetic not sympathetic.
This is my experience and my life and I am owning it and succeeding. Just because it is not in line with conventional life experiences (whatever that may be) doesn’t mean that I’m not happy and can’t enjoy my life. This experience has led me to be more non-judgemental with other people’s experiences, not placing my own perceptions on their experiences and the way they react, but to simply listen and be open to what is happening in their life. After all, two people can experience the exact same event and have totally different reactions, emotions and feelings. It doesn’t make one person right and the other wrong, nor one strong and the other weak, it just proves how unique we all are.
This whole journey has been scary, even terrifying at times. When I was told I was going to go blind I immediately felt an overwhelming sense of suffocation at the thought of not being able to see. In those first months, I have never felt so afraid of my future. I had absolutely no idea how I was going to cope or even what I should expect. How quickly was my sight going to fade? Could I still work? How would I walk around the house? How do I tell people? How do I tell my family? Can I have kids? Will people still want to be around me? In hindsight, I can now see how each question is answered, but at 23 I was distraught.
The first two years or so were the hardest. I was unsure of myself and my abilities. I struggled to trust myself and those around me on an emotional level and physical level. Each day I seemed to notice another task I was having difficulty with. Every few months I would notice I needed to increase the font size despite magnification. Each of these felt like a new blow, like I was climbing a mountain and as I saw the peak, I was thrown back down.
Through continual obstacles I was forced to find courage within myself to keep on going, keep pushing through, keep challenging myself and finding strength to not give up. I was forced to look at life from a different perspective. I found the fire within me and ran with it.
I now have the courage to try things. Even if something may seem daunting or I can’t picture how I’d achieve it with my vision, I find a way to at least try. Once I try, I realise that I can still do everything I want!
I have always been a determined person especially when it comes to achieving my goals. When I look back at the last five years, I realise how determined I am in everyday life events, in regaining my independence, in overcoming anxiety and panic attacks. At first I found it incredibly hard to overcome my fears, but once I started I couldn’t stop (probably my competitive nature!).
If you lack determination, my advice is to start small. Pick something that is achievable in a short period of time. For example, say to yourself “I am going to walk to the shop today”. If you don’t succeed the first time, don’t beat yourself up, tell yourself you’ll try again tomorrow. As you chip away at your fears and challenges, your determination and willpower will grow each time.
Now more than ever I appreciate everything around me. I appreciate my life, I appreciate the people around and I appreciate my experience. I appreciate everyone’s contribution in my life, whether it be negative or positive.
This experience has made me who I am and as much as I one day want there to be a cure for Stargardt’s, until then I can be content with my life and where it is heading. If there is no cure in my lifetime, I will be satisfied with my life even with my limited vision.