A common question that arises amongst people with
Stargardt's Disease and other vision impairments is whether I use a
cane, a guide dog or neither. The question then asked is visual acuity,
how it helps and why some people use aids and others don't. I've been
thinking about this question a lot lately and hope to help others with a
vision impairment and without to understand why I choose to use a cane
and what factors influenced my decision, and hopfeulyl help others to decide, whether to use a mobility aid.
As
I've previously written, my cane and I have a love-hate relationship. I
went through a period of using it to not wanting to know there were
three in existence in my house, to becoming best friends with it once
again. For the past few months I have made a conscious effort to get
used to using it and taking it whenever I'm out.
There were two main reasons I chose to use the cane:
Crossing
roads: My ability to cross a road is absolutely terrible. I'm an avid
walker and love to get out in the fresh air and walk to calm my mind.
Every time I found myself curbside, I felt vulnerable, clumsy and even
more vision impaired. I couldn't make out whether there were cars
coming, if near a busy road there was no auditory break in the traffic
and I felt like I was walking into an abyss. Then came the anxiety from
the feeling of vulnerability and the loss of control. When I walked with
another person, I would solely rely on them to usher me across the
road. I knew this wasn't healthy and I couldn't rely on others. So Mr
Cane came back into my life once again like a clingy, annoying boyfriend
although this time he had gotten his act together and we were actually
getting along. I found just having the cane in my hand to indicate
brought a sense of calm and confidence to crossing a road, it let others
know that my vision sucked and they should be patient and careful if I
start to cross. More than anything it was security. It was a way of
announcing to the world I'm vision impaired. People's reactions were
(mostly) helpful, they would stop and let me cross and some even
reversed to let me pass. It restored my faith in humanity and made me
feel like the world isn't such a scary place.
Pavement
problems: I'm a klutz on the best of days and now I'm a super klutz.
The pavement around where I live seems to be really bad, the huge
eucalyptus and gum trees' roots have made the footpaths cracked and
uneven. Since using the cane I haven't had any stacks or tripped over where
I normally would. Just to reinforce this, I went for my usual walk the
other day without my cane and I tripped numerous times and realised it
was my karma for leaving the cane at home. It's actually quite
surprising how helpful the cane is when on the street. I never noticed
how much I was concentrating on where I was going and what I was walking
into. When I started using the cane I found I could relax a lot more
and take in my surroundings using my other senses rather than staring
intently at the ground in front of me.
Choosing
to use a mobility aid such as a cane or guide dog is a highly personal
choice and isn't solely based on visual acuity or degrees of vision.
Each person is different, has different experiences and different needs.
Here are some of the things that are usually taken into account when
deciding on an aid:
Confidence: This is extremely important. Being confident with your surroundings, with the amount of vision you have and the way you use it will impact whether you decide to use a mobility aid.
Lifestyle:
This includes work - how you get there and what you do at work ie
whether you need to navigate a great deal, leisure activities such as
sports or running and social situations. Use of a mobility aid may not
be needed in all areas of a person's life. It is pretty much impossible to run with a cane (yes I've tried and looked like a clown running down the street) and sometimes it's better left at home.
Location: Where you live can also play a part. If you need to travel far on public transport or have access to lifts from others will influence the decision to use a mobility aid.
Perception:How
you perceive mobility aids plays a huge role, not so much for the
positive. I personally have struggled with, and still do, the stigma
surrounding using a cane. There tends to be a little less stigma
associated with a guide dog as they are far more cuter than a cane! As
much as I'd like to say how you perceive using a mobility aid doesn't
attribute to whether you use one or not, it really does play a major
part. I avoided using my cane for a very long time because I was
embarrassed as to what people think and I still have times where I feel
like people are staring and talking about me.
The
one thing I have learned is that if I need help to not be ashamed and
to use it. If a cane, guide dog or anything else helps me navigate, feel
confident and improve my quality of life I should use it. I also know
personally and from others with a vision impairment that because we have
some sight we don't 'deserve' a guide dog. This is utter rubbish. As I
mentioned before, if it helps us in life, we deserve it. Be open to
trying mobility aids, sometimes you find a use for them that you had
never considered.
Image
source:
http://www.google.com.au/imgres?imgurl=http://4c1lions.files.wordpress.com/2012/06/white-cane-day.jpg&imgrefurl=http://district4c1lions.org/about/white-cane-safety-day/&h=399&w=600&tbnid=ELquhjxngEcDHM:&zoom=1&docid=XQcXF0wr-QH-OM&ei=44aOVb_HA9P68QWVnYDQDQ&tbm=isch&ved=0CDoQMygXMBc
and https://www.pinterest.com/pin/274578908507893730/
Over the past few years I have had numerous thoughts that provoke fear and sadness about things in my future. From having my whole life seemingly planned (yes I know I'm slightly OCD) and my goals within my reach to all of it taken from underneath me. I sometimes look back at the day of diagnosis and the weeks following it and the feelings and thoughts I had - they were grief-stricken and quite frankly irrational. I'm thankful that at the time I did not make any rash decisions, most likely because I had no idea what to do.
I've gathered some of my most personal and distressing thoughts I've had about my diagnosis with Stargardt's and how it will affect my life. For each of them, I've tried to take a positive spin and find the reality in each to help me cope and see the glass half full. I hope this can help others who are having the same thoughts.
My Fear: How will I ever see my babies faces? My Optimism: I can still see faces up close, and let's be honest I'll be in my babies' faces constantly! From being around other babies I won't lie and pretend I haven't noticed that I need to get closer to see their cute little eyes and smiles, but from the experience I've been able to find a certain peace in it and know that I will still be able to see them to a degree up close. It won't hinder my bond with my children. They will also learn to adapt to my situation and become strong, positive little beings who are sensitive to people with a disability.
My fear: I won't be able to live independently. I won't be able to get where I need to go in an emergency and especially if I have kids. My optimism: I live at home with a huge family and enough animals to have our own zoo. I have lived out of home previously but this was the early stages of my disease and I could still drive. I'm hoping to move into my own place in the near future and have realized that there is a lot I need to consider - I need to make sure I live walking distance from shops, doctors etc, close to public transport and my work. I also want to be a short distance from my family so I can travel alone to them. When I tell people that I want to stay living locally I am frequently questioned and told there are so many other beautiful places to live. The reality is - I need support. Is that a bad thing? No. Do people without a vision impairment need support? Yes. So what is so bad? Nothing. I may need to plan my location a little more than the average person but that really doesn't matter. In the end I will still be able to find a home with accommodations to support my independence.
My fear: I won't be able to find a partner who will accept me for me. My optimism: If someone can't accept I have a vision impairment and see my worth as a person, then they aren't worth another minute of my time! This is something I have grappled with numerous times and it is hard to actually truly believe it. My generation is focused on possessions, selfies and everything is disposable. There is always something better (apparently). This has really broken me down. I have thought I now have a 'flaw' and 'who would want to be with someone who can't see or drive?' I've realized how untrue this is. My vision doesn't affect my worth as a person, in fact it increases it. It has given me knowledge, strength and resilience. It has given me a whole new outlook on life, taught me empathy, taught me determination. These are all qualities that are positive and can bring wealth to a relationship. So if somebody doesn't appreciate that, to be cliche, it is their loss. I would never be the strong woman I am today without this experience.
M fear: I won't be able to work doing a career I enjoy. My optimism: Of course I can! Never say never (sorry, I hate to quote Justine Beiber but he is actually right!). I've said this from the start, I may just have to take a different route to get to the end goal. For instance, I wanted to do medicine, I wanted to be able to help people. What did I do instead? I studied psychology. I'm still doing what I love and will be able to sustain this career despite my vision. It could be anything you want to be (with the exceptions of anything driving related but driver-less cars could change this!).Don't listen to people who tell you otherwise. It may be tough at times but what in life isn't. The most important thing is to do something you love and enjoy every day and do something that gives you meaning. Don't settle for anything that doesn't make you happy.
I hope that others can find the optimism in their fears. I am still battling with these ideas but over time it becomes easier and I become more positive. It is always scary at the start but once you really think about the truth in the thoughts they don't seem as overwhelming.
Most of all never think you are alone. Sometimes speaking out about your feelings and emotions can be beneficial. It is cathartic. Whether it be family, friends or a counselor. Vision loss is not just a physical condition, it affects every aspect of one's life. Don't be afraid to acknowledge that.
In the past couple of months there have been several news articles talking about optogenetics and its use as a treatment for eye conditions including Stargardt's, Retinitis Pigmentosa and Macula Degeneration. I hadn't come across the term so I thought I'd do some research into what exactly it is, since I am known to have to know everything about everything!
Optogenetics is a new technology, first discussed in 2004, using the ideas of neuroscience and microbial biology. The basic idea of optogentics is that light can activate and deactivate cells. It was observing algae that led to the lightbulb moment (excuse the pun). Algae would swim towards light, and scientists found a protein that was activated by the light and causing its behaviour.
Scientists then came up with the idea to remove the DNA (protein) from the algae, use gene therapy (attach it to a virus so it can be put into other animals) and then inserting into the animal cell. Once it was in the cell, it would replicate and fill the cell with these light sensitive proteins. They could then manipulate the cells using different coloured light. They also had the ability to add these viruses only to certain cells.
This technology is being investigated for brain diseases but also for vision conditions. Below is a TED talk that explains the discovery of optogenetics, how it is being researched and describes its use for vision conditions. Basically what it says is that even though the photoreceptor cells are damaged, light can still get into the retina. Optogenetics installs cells to act as a 'camera'. The video shows an experiment they have done with mice that, I must admit, got me a little emotional thinking about the possibility of seeing things again!
Below are links to optogenetics and vision articles.
