I hope to keep raising awareness of Stargardt's, other vision impairments and how it affects our younger populations. Most of all, I want to keep raising awareness of how amazing and fulfilling our lives can be!
Showing posts with label Blindness. Show all posts
Showing posts with label Blindness. Show all posts
Monday, September 28, 2015
My interview on Radio RPH
I was invited to do an interview on Radio RPH Adelaide on a program called Vision Extra. I was interviewed by the awesome Peter Greco and talked about my experience with Stargardt's Disease and how it lead me to establish See Through My Eyes as a not-for-profit organisation.
I hope to keep raising awareness of Stargardt's, other vision impairments and how it affects our younger populations. Most of all, I want to keep raising awareness of how amazing and fulfilling our lives can be!
I hope to keep raising awareness of Stargardt's, other vision impairments and how it affects our younger populations. Most of all, I want to keep raising awareness of how amazing and fulfilling our lives can be!
Sunday, June 7, 2015
My Fear Vs My Optimism
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.
Image source: https://www.pinterest.com/pin/362328732497745408/
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.
Monday, June 1, 2015
What's all the talk about Optogenetics?
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.
Medical Daily, 11 May 2015
Science News, 15 May 2015
PLOS Biologue, 7 May 2015
Daily Mail, 11 May 2015
Image source: https://www.sciencenews.org/article/how-rewire-eye
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.
Medical Daily, 11 May 2015
Science News, 15 May 2015
PLOS Biologue, 7 May 2015
Daily Mail, 11 May 2015
Saturday, March 7, 2015
Today is a milestone
Today is a milestone in my journey. Apart from being my sister's birthday (Happy Birthday J!), it's also the day my driver's licence expires.
I've held my licence since I was 16 and got my Learner's. My first care was this horrendous red Mercedes Benz station wagon that fit seven people, two backwards in the boot. It was our old family car and I think my parents gave it to me so they could keep track of where I was, because everybody knew the car and would report back to my Dad who would then phone me and ask where I was. Busted! Apart from it's hideousness, it was a sturdy, solid beast and kept everyone safe.
My second car was, once again, a dump. My Dad being a mechanic was always picking up old cars no-one wanted. This lead to my inheritance of an old blue Mitsubishi Lancer. The catch was that this car was manual, and I only knew how to drive automatic. I've never felt more uncoordinated in my life learning to drive manual. I stalled the car (not exaggerating at all) over 10 times at one intersection! Luckily, I finally got the hang of it and turned into the manual queen!
My little Lancer got me to and from uni, and in my final year of uni I landed a full-time job and my first real income. My first purchase was a brand spanking new silver Mazda 2. She was my baby, my first really large purchase. It was only a few months after I bought my baby that I started having vision problems and was diagnosed with Stargardt's. What a slap in the face.
I was told at that time I shouldn't be driving at all, but I'm NOT proud to say I continued to drive, only short distances and not on freeways. I know I shouldn't have but letting go was ridiculously hard. I wasn't coping with all the emotions of this diagnosis and this was another blow.
As my vision deteriorated I knew I had to stop. That was a huge decision and something that caused me a lot of stress and anxiety. I've written about that experience previously. This was also when I decided to sell my car. It was a contributor to my rock bottom.
Even though I haven't driven for about a year, today still is a big deal. I've known this day was coming and it was always a black day in my mind. It feels as though it is now final, done, can't be changed and set in concrete. There's no chance I could renew my licence. It's almost as if I had hoped a miracle would occur and I would improve. I never lose faith until the day has passed!
To be honest, I don't feel as bad as I thought I would. I thought I'd be feeling anxious and like my control is being taken away. Part of this lesser feeling is probably due to not having driven in a while, I essentially weaned myself of driving, then the idea of driving. I've really surprised myself and I'm surprised in my strength and positivity.
I still hate public transport and will continue to avoid it (chauffeur wanted, enquire within!). This just gives me more motivation to succeed and bring about change for others. I want everyone else to know that it DOES get easier. I'm not going to lie and say it's a walk in the park and I don't have days when I just want to cry, but overall my outlook has changed and my drive just keeps increasing.
It's hard to let go, but do it slowly if you can. It always looks worse when you are looking into the future, but once you're there, it's not so bad. Then when you look back, you think 'wow, I did well' and can feel proud and push yourself further.
Stay positive and never, ever give up!
Photo credit: https://www.pinterest.com/pin/45739752440941597/
I've held my licence since I was 16 and got my Learner's. My first care was this horrendous red Mercedes Benz station wagon that fit seven people, two backwards in the boot. It was our old family car and I think my parents gave it to me so they could keep track of where I was, because everybody knew the car and would report back to my Dad who would then phone me and ask where I was. Busted! Apart from it's hideousness, it was a sturdy, solid beast and kept everyone safe.
My second car was, once again, a dump. My Dad being a mechanic was always picking up old cars no-one wanted. This lead to my inheritance of an old blue Mitsubishi Lancer. The catch was that this car was manual, and I only knew how to drive automatic. I've never felt more uncoordinated in my life learning to drive manual. I stalled the car (not exaggerating at all) over 10 times at one intersection! Luckily, I finally got the hang of it and turned into the manual queen!
My little Lancer got me to and from uni, and in my final year of uni I landed a full-time job and my first real income. My first purchase was a brand spanking new silver Mazda 2. She was my baby, my first really large purchase. It was only a few months after I bought my baby that I started having vision problems and was diagnosed with Stargardt's. What a slap in the face.
I was told at that time I shouldn't be driving at all, but I'm NOT proud to say I continued to drive, only short distances and not on freeways. I know I shouldn't have but letting go was ridiculously hard. I wasn't coping with all the emotions of this diagnosis and this was another blow.
As my vision deteriorated I knew I had to stop. That was a huge decision and something that caused me a lot of stress and anxiety. I've written about that experience previously. This was also when I decided to sell my car. It was a contributor to my rock bottom.
Even though I haven't driven for about a year, today still is a big deal. I've known this day was coming and it was always a black day in my mind. It feels as though it is now final, done, can't be changed and set in concrete. There's no chance I could renew my licence. It's almost as if I had hoped a miracle would occur and I would improve. I never lose faith until the day has passed!
To be honest, I don't feel as bad as I thought I would. I thought I'd be feeling anxious and like my control is being taken away. Part of this lesser feeling is probably due to not having driven in a while, I essentially weaned myself of driving, then the idea of driving. I've really surprised myself and I'm surprised in my strength and positivity.
I still hate public transport and will continue to avoid it (chauffeur wanted, enquire within!). This just gives me more motivation to succeed and bring about change for others. I want everyone else to know that it DOES get easier. I'm not going to lie and say it's a walk in the park and I don't have days when I just want to cry, but overall my outlook has changed and my drive just keeps increasing.
It's hard to let go, but do it slowly if you can. It always looks worse when you are looking into the future, but once you're there, it's not so bad. Then when you look back, you think 'wow, I did well' and can feel proud and push yourself further.
Stay positive and never, ever give up!
Photo credit: https://www.pinterest.com/pin/45739752440941597/
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