Living With a Degenerative Condition
Stargardt’s Disease, along with other retinal diseases and general ocular diseases, is a degenerative condition. This means that the condition continually worsens. Usually the condition is caught in the early stages, and sometimes preventative measures can be taken to slow progress, but in the case of Stagrardt’s and other retinal diseases, there is nothing you can do to slow down progression or stop it all together.
Being diagnosed with a degenerative condition can be quite deceiving. When I was diagnosed, my visual acuity was around 6/15 in both eyes (almost good enough to drive). So I was told what I had would degenerate over time, to the point of ‘legal blindness; (which at the time meant absolutely nothing to me) but the rate or degree of degeneration could not be predicted. This meant I was diagnosed with a potentially blinding condition, could still see, but no prognosis could be given except ‘legal blindness’.
When you get an unpredictable diagnosis like this, it can be really confusing and misleading at times. I would think ‘I still see ok, I’ll be fine doing what I’m doing’, other times I’d think to myself ‘you’re going to go blind one day you won’t be able to do anything’. There was this incredible fear of the unknown, although the unknown was known as blindness. But when would I reach this unknown and how would I know that I had reached this point?
Stagardt’s is tricky to predict because the incidence and prevalence has not been researched in Australia or worldwide .It is estimated at 1 in 10 000 people are affected. There has been little published research on how the condition actually manifests and what we can do to prevent it, although currently a trial is being conducted following people with Stargardt’s to map their progression and understand what actually happens during the course of the disease. Without such information, we can’t get a prognosis which, for someone like me who is a control freak and a planner, can be really quite daunting.
The hardest part of having a degenerative condition that leads to disability is that as your vision changes you need to find new ways of adapting and coping. My needs have changed multiple times since I have been diagnosed, and will continue to change as my condition further deteriorates. This can be things like adaptive technology; at first I didn’t need any software on my computer, then I needed a magnifier (I use Zoomtext), then as my vision deteriorated I would increase the magnification (I’m now up to at least x3 magnification plus massive font). The same thing happened with reading. At first I could still read using my iPad and iBooks with large font, then I had to shift to audiobooks (which I resisted and now can’t live without). I went from being able to read my textbooks for uni on my iPad in large font to having to listen to them through software such as Kurzweil 3000 and Voice Dream, all whilst I was still studying the same degree!
As you can imagine, this gets incredibly frustrating. Just as I would adapt to doing a task one way, I would find myself struggling again and would have to come up with another way of doing the same task. I came so close many times to giving up on my study (which I could have done since I have already completed multiple!) because I would feel like I had to start over again, learning a new way to get my work done which would then take me longer. Explaining this to support services would be even more stressful as my needs could change within a semester and people didn’t understand how I couldn’t know what I would need from month to month.
During these times I would cry, I would chuck tantrums, I would refuse to do any work and curl up in a ball in my bed since closing my eyes was the only way I could avoid what was going on with my vision. The frustration was unbearable at times and I had the “why me” thoughts. I told myself, “why me” because you can do it. FIgure out a way. Use this as an excuse to get a cool new gadget or a new app. Think about the reward at the end; reaching my goal of becoming a psychologist.
This scenario happens over and over again. I have never gotten used to the fact my vision will continue to deteriorate. Although, each time I am a littler more stronger, better equipped to deal with my emotions and it takes me a little less time to get back up and keep going. There’s nothing wrong with having a down day and I let myself wallow in my sorrows, get the tears out, and then push through.
Emotionally, this process can be quite taxing. Recently, five years after diagnosis, I had a wave of panic overtake me. I was laying in bed, calm (so I thought), and a thought fluttered its way across my mind – “what if you can’t see anything”. I had instant nausea, my heart started beating faster than if I was on the treadmill running and instant sweaty palms. Not being able to see what is in front of me has fed my anxiety disorder. It was the reason I was terrified to leave the house. So when a thought like this pops up, I become quite distressed. It has been such a battle to get to the point I am now I didn’t feel that I could do it all again.
Sometimes I think I can accept my situation if my vision stays the way it is now, but it probably won’t. So I can’t hold onto this thought for too long. It will only make it harder. I’ve found I can’t live in fear of waking up and noticing change in my vision, or anticipating the future deterioration of my vision. All I can do is live in the moment and take each day as it comes. If one day my vision deteriorates more, I will deal with it, just as I have dealt with every previous day.
Cover image source: https://au.pinterest.com/pin/131730357829181504/