Reconnecting with Creativity

Being creative is something that my life has encompassed since I was a child. I started dancing when I was three years old and kept it up for over twenty years. I did drama and singing, drama I didn’t like so much but I loved to sing. During primary school I learnt to play the piano, clarinet and saxophone, and kept the piano up in early high school.  I used to do creative writing and art.

I went to a performing arts high school and spent my days amongst a creative bunch of teenagers. I majored in dance (yes it was totally like Fame we used to bust out in the playground) but also continued art. I spent my first year out of high school doing a full time performing arts course before attending university.

Then my sight deteriorated. I stopped everything. Dancing had been my entire life; all my closest friends are from dancing. It wasn’t an immediate reaction, but I slowly gave things up and attributed it to ‘growing up’. Who says you need to stop doing things you love because you are getting older?!

Over the past months I’ve realised how being creative was something I enjoyed and shouldn’t let my lack of vision get in the way. I’ve made a conscious decision to start to ease back into the things I enjoyed and find ways to participate despite my sight. I know that it is going to be different doing these activities but I’m choosing to look at it as a challenge and as a new adventure.

My first focus is on playing the piano again. We have two pianos in my house and it’s time somebody actually played them! About two years ago I started private classes again to get back into it but it was extremely hard explaining my vision to the teacher and finding a way to learn because I couldn’t read the music. I had never learnt from ear and wasn’t sure how to start. I ended up giving up after a few months.

This time I’m determined to get my fingers working again. I have decided to learn braille music. I will admit it looks utterly daunting with all the dots everywhere. I do like to challenge myself so I am going to give it my best shot.

Another thing I’ve started is colouring. Art therapy is all the rage at the moment and I couldn’t miss out! I downloaded a colouring app (Colorfy) on my iPad and Samsung phone and it was great. You can zoom in and tap the spaces to fill in colour. Of course I wanted to do the real thing so I bought myself a mandala colouring book. I promised myself that I wouldn’t get frustrated if I couldn’t do it. I spent three hours calmly colouring in tiny spaces using only my peripheral vision. I don’t think I’ve ever sat still for that long! It was definitely calming but each stroke, as I guessed where some of the lines where or made mistakes, helped me accept a little more that my sight has deteriorated and also reinforced I can still do things if I really try. 

If you think you need to give up a hobby or passion because you are losing your sight, don’t. If you think you can’t do something because your sight will prevent you, you can. If you’ve given up something you loved due to your sight, give it another go.

Being creative is part of being human. For you it may be writing, drawing, dancing, crafts, cooking, absolutely anything. Make yourself engage in it again. 

Pick up something you did when you were a child and see how carefree you feel again. There’s no harm in trying! Apart from my braille piano project I plan to get back into the dance studio.  I know this is going to be a huge challenge but determination will always prevail.  Never give up on things that make you happy. There’s always a way to participate and be creative. 

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/



 

Real People #3

This month's story comes from a fellow Stargardt-er from my city. We live on opposite sides of Sydney and as yet have not met in person, but thanks to social media we have been able to connect and be supports for each other.

Mike Lainis, 53, Sydney, Australia

When were you diagnosed with Stargardt's and how did it affect you at the time?

My Journey with Stargardts began 5 years ago in January 2010 When I was 48 years old.  After loads of testing including blood tests and chest x-rays for TB! I was sitting in the ophthalmologist surgery blurry eyed from the "drops” and the numerous flashes of light from the fluorecein angiograph procedure (they pump you with green fluorescence in your veins and take photos of your macula all at the same time). She finally turned to me and said you have a late onset of Stargardts! I thought yes I am seeing stars at the moment,  Ok...., so my next question was what are you going to do? Laser, medication or an operation? What ! No cure! Just avoid the sun and Vitamin A supplements and see you in a year’s time, cheers.....

Wow. Went home told my wife and family, we climbed on the net for hours researching. Nothing. No cure or procedure.  I thought surely in this day and age all diseases have some kind of cure, nope, not this one. For the first three years it was more of an irritation not been able to do things I had done countless times before. 

What do you do for work and has the condition impacted you?

Throughout my life I have worked in the construction industry. I ran my own cabinet making business, for 10 years, producing some fine solid wood furniture. I slowly moved up to be a project manager.  I worked in London for 6 years on upmarket residential apartments in Kensington and Kew Gardens. I worked in Brisbane for 5 years on the prestigious David Jones Queens Plaza and Chermside stores. I worked in Sydney for the last 5 years on Hugo Boss, Coach and Thomas Sabo stores to name a few things I have done. However now I work at my kid’s school on a casual basis doing maintenance work. A far cry from what I was doing but I am at peace with that. The school has been very supportive.

What would you say are the defining moments since being diagnosed?

Late 2013 I had a "near miss" whilst driving. Nearly took out a traffic officer. Silly man was standing in the middle of an intersection! The traffic lights had stopped working, and he was directing traffic. I was looking to the left for other cars coming out of the intersection and did not see him. He was in my "blind" area of vision. I had to screech the car to a stop right in front of him. He wasn't happy with me, had the finger waving. Realizing I could have killed him I decided my driving days were over.

Then after last December holidays, maybe after too much fun in the sun, my left eye, central vision finally all went. After a visit to the ophthalmologist he declared me "legally blind". A shock to the emotions as I thought I still had a few more years to go.

What would you tell someone who is struggling with a vision impairment?

Being positive is critical in coping with this condition.

When I was at school I was involved in Scouting. Achieved the highest award (Chief Scout Award) and went on a Jamboree to America. After school I went into the army for a couple of years. In later years I was a river guide and then also lead an expedition to an Malawian Gamepark whilst been a member of the Royal Geographical Society in London.

During this time I was taught survival techniques and even ran a few courses myself. The greatest life lesson I learnt was, when you get lost in the bush or end up in a life or death situation, it is “the will to survive”. You can have all the training on how to light a fire or how to find water and food but if you give up mentally you die. The same with this condition, you can't let it take over. You need to fight it each day, develop new skills and ways of doing things. Accept the situation, you can’t change the fact you are going or are blind, and then move on with your life.

Lastly my faith in God has increased dramatically over the last few years.  God gives me the strength when I am feeling weak. My favourite scripture now is “I walk by faith not by sight" 2 Corinthians 5 vs 7. Whilst I believe Jesus is able and is willing, for us to be all healed of all diseases, I believe it is all in God's timing. There is a purpose and process to this condition in my life right now, to teach me perseverance and strength of character. 

My hope and prayer is that God will give someone the insight and wisdom to find a cure not only for one person but for all who have this condition. Hopefully one day I can be part of that process.

Thanks Mike for sharing!

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/

Real People #2

This month's story comes from a good friend of mine who has been a great support to me from my early days of diagnosis. I hope he can inspire you too.

Jono Goerlach, 32, Canberra, Australia

Tell us a bit about your condition and your symptoms.

At age 15 I was diagnosed with Usher Syndrome Type 2. This condition combines both Retinitis Pigmentosa, and slight-to-moderate hearing loss, which I have had since birth and wear hearing aids to combat this.

What is your current situation, what do you do?

At present, my primary focus is on being a full-time Triathlete. I've been involved in the sport for almost 3 years, building towards my end goal of qualifying for a Paralympic Games. In an effort to give myself the best opportunity to achieve this goal I chose to move to Canberra one year ago where my coach and his triathlon squad are based.

Since moving to Canberra I have also signed up to a double bachelor degree at the University of Canberra, studying Sport & Exercise Science/Sports Management.

On top of these two time-consuming responsibilities I work part-time as a Soft-Tissue Therapist to help pay the bills and maintain at least a little social life.

What was your biggest hurdle and how did you over come it?

My biggest hurdle was around the age of 26 when I reached a point in my life where the reality of my impending blindness started to come to fruition - and I wasn't even prepared for it. Initially, admitting that I was depressed and dealing with anxiety was the first step to getting back on track. The next step was to find something I was passionate about, set goals to work towards, so I could have something to focus on - sport was my passion before my diagnosis, and sport was the passion that would be the answer to moving forward. Since returning to sport my life has completely changed, to the point where I feel like I've lived two lives. I'm only just getting started :)

What are your goals for the future?

My main goal is to represent Australia at the Paralympic Games. Up until October 2014 I was focused on Rio 2016, but unfortunately that opportunity has been taken away simply due to fact that our sport has five types of disability but only three types/classes were offered a medal event. The positive, though, is that I do have an opportunity to go to the following Paralympics in Tokyo 2020.

I am also driven to finish my degrees so I can start working with athletes with a disability in areas of sporting development/management. I am also passionate about reaching out to the wider vision-impaired community to educate them and their supporters about the many opportunities there are available to them - having a disability is an opportunity to find your true abilities.

What would be your best bit of of advice for others going on a similar journey?

Find your passion and let it take over your life. Having that focus will produce more opportunities than you could imagine - life is defined by opportunities, even the ones you miss.

If you'd like to follow Jono's journey to triathlon greatness follow his Facebook page here.

Standing Up For Your Rights

I haven't really touched on standing up for myself in terms of my rights as a person with a 'disability' since starting this blog almost five years ago now. Partly due to the fact that I am really bad at doing it! 

My most current problem is with studying at university. I am due to be completing my final year of psychology this year and have been having issues with the uni I am currently enrolled in (which is a different uni from my previous studies). Since I am still in the negotiation process I will not name them just yet and hope they do the right thing and support me.

Now I study via distance education as it's easier for me with my sight, with working and with life in general. As a post graduate, I don't really want to be on campus but rather spending the time furthering my career. Even though I am studying distance my course has residential schools as a component, four lots in total over the year. The campus is not local to me, it's about a three hour drive from the city, which of course I can't drive, about a seven hour train ride (into the bush) or a small plane flight (although the airport  is closed at the moment). 

My issue stems from two things - my vision and my anxiety. It is hard for me to travel with my vision and there is no way I feel comfortable getting a train to somewhere I have never been on my own then somehow navigate to the campus and to a hotel. I can't even read a sign! I'm still new to this whole vision impaired experience and travelling on my lonesome is not something I feel comfortable with yet. I'm a small girl and haven't learnt kung fu (but don't worry I'm in the process of that) so I feel very vulnerable. And I'd have to do it four times over the year. I could get someone to take me but frankly I don't have anybody who could take weeks off work to spend in a country town while I sit in lectures for a course I'm supposedly doing through distance education.

So you'd think I have a fairly good argument to be supported to participate in another way right? Well apparently not. I've had numerous comments from the disability officer that they have another student who is 'fully blind' and goes on campus and why can't I study at another uni? Oh ok, too hard for you so palm me off? As for the 'fully blind' comment (said more than once), can you be any more condescending? You don't know my experience or my history, you know nothing about me! You don't know how I cope or all the effort I'm making to deal with my diagnosis and live a normal life! 

I was on the verge of giving up. I had a chat with someone who is involved in disability research and she gave me some useful resources to support my case and present to the uni. One of which was the UN Convention on the Rights of Persons with Disabilities  which Australia is a signatory and must abide by. The main points to note in regards to education is that every person has a right to education and 'reasonable adjustments' should be made for a person with a disability.

I was still wary of picking a fight as such with the uni, and was not keen for any confrontation. Then I thought, I have to be more assertive and fight for myself. So I put together an email quoting the above and specific guidelines relevant to psychology and sent it off. 

The response I have gotten so far is.. well iffy. I'm not really sure where it's heading. Regardless of whether I succeed at least I can say I tried and I made others think of the individual needs of someone with a disability.

If you are in the same situation don't give up, try your best to be assertive and stand your ground. If you get really stuck there are disability advocates who can help and speak on your behalf. We have the same rights as everybody else and organisations need to be made aware of the different needs which are necessary for success. 

Updates on the outcome of my situation to come! 

Real People # 1

In the coming months I will be sharing stories of others living with Stargardt's and other retinal dystrophies. These people have all inspired me on my journey and no doubt will inspire you too!

First up is Jenna!

Jenna Lawson, 22, Florida, United States

What is your diagnosis and how does it affect you?

In March of 2011, I was diagnosed with Stargardt disease, a type of retinal dystrophy. This disease impacts my central vision and, at this point, I have no central vision left. When I first began losing my vision and I was told that neither glasses nor surgery would fix my problem, I was very scared and upset. At that point in my life, I was a year out of high school, I wasn't going to school (even though I really wanted to), and I was trying to enroll in a dental assisting program that I thought would bring some direction to my life. I had successfully enrolled in a program and was due to start in a few days when I received the news about my eyes, so I had to withdraw from my classes until I figured out what was happening with my vision. In addition to feeling scared, I felt angry because all I wanted to do was get my life on track, but all of these events were preventing me from doing so.

I, thankfully, received an official diagnosis two months later, and I remember thinking: "This is my life now. There is no looking back." I was so relieved to simply know what I was dealing with that acceptance came very easily. I was so eager to pursue my life that something like Stargardt was not going to stop me. Funny thing is, Stargardt disease turned out to be one of the biggest blessings of my life because, not only did it enable me to attend school, but it helped me realize my true strength and tenacity. It's strange how something that, at first, seemed so negative turned out to be such a positive and motivational experience.  I definitely encounter challenges from time to time, but I have accepted my eyes for what they are and this alone has given me great peace.

Where do you currently work or study and how do you find it with your vision impairment?

Currently, I attend the University of Central Florida, and I'm pursuing a Bachelor's in Social Science Education. My goal is to become a history teacher. Before UCF, I attended Weber State University in Utah. When I lived in Utah, I walked three miles to the nearest bus stop, in the cold and the snow, and then rode the bus for an hour to school. I kept getting sick because of the cold and I hated the long commute, so I moved to Florida where I'm able to wear sandals and shorts almost everyday. I take classes online, and I also take classes at a location that is about three miles from where I live. I ride my bike to and from this location, rain or shine. School is my job, at the moment, but I spend a lot of time volunteering at an elementary school. I ride my bike there, as well, because it's close to where I live. If I have to go anywhere else, like the grocery store or the dentist, I have to have a friend or family member take me.

What hobbies do you have?

I love to paint and draw, write stories, read, spend time at the beach, hang out with friends and family, watch movies, travel,  study world history, and belly dance. I continue to enjoy all of the activities I did before I began losing my vision. I started belly dancing about a year ago because I wanted to improve the health of my spine (I spend a lot of time hunching over notes and textbooks because I have trouble seeing).

What has been the biggest hurdle you have faced?

The biggest hurdle I have faced has been transportation. Transportation has been the most persistent and frustrating problem. In the United States, there is sort of this expectation that anyone 18 or older should be largely dependent on themselves. Lack of transportation makes it so you have to depend a lot on other people, and a lack of transportation can also limit your access to job opportunities. Learning to accept a state of dependence is difficult, and it can sometimes feel demeaning when you live in a culture that places so much emphasis on independence and "finding your own way". Not being able to provide transportation for yourself also shows who your true friends are; those that truly care will undoubtedly find the situation tricky, at times, but they will be there to support you no matter what, whereas others will see you as a burden and will disappear from your life. I take this hurdle one day at a time. As far as relationships and job opportunities go, I have come to view my transportation issue as a filter. In other words, opportunities and relationships will continue to be in my life, regardless of my eyesight and the challenges I must face on a daily basis.

What's the best advice you'd give to others in this situation?

I have learned some very important things over the past few years that I would love to share:

• Acceptance leads to success. Looking back on what used to be doesn't make things any easier, and it most certainly will not make you happy.
• Be your own advocate. If you need help, don't be afraid to let people know. There are so many resources for people who are visually impaired. It's truly an amazing experience when you connect with people who are dedicated to your success and well-being.
• Realize that things could be a lot worse. Honestly, I'm lucky to have Stargardt because, while I may lose an extent of my eyesight, I will never lose all of it. There are people out there who have suffered much worse and, amazingly, they have powered through it and come out on top. These people have been my greatest source of inspiration
• Never let others minimize your frustrations, challenges, or experiences.
• Pursue your interests and continue to live your life.
• Honor your sadness, frustration, and fear, but don't allow these emotions to consume you.

Thanks Jenna for sharing. You have been an amazing friend and support from the other side of the world!

Here are some of Jenna's beautiful artworks. I've previously shared some of her work make sure to also check it out here.

If you want to connect with Jenna on Facebook click here.

Second chance for Mr Cane

I have been walking a lot more since unwillingly giving up driving. I have grown in confidence with walking alone but I still find road crossing difficult. I'd given the cane the flick because we just weren't getting along. I haven't used it in some months now although there has been a little voice in the back of my mind telling me to pull it out again and give it another go. 

Yesterday was the big day when Mr. Cane got his second chance to win me over. I must admit, he did a damn good job at it! I went for a walk with a friend who hadn't encountered anyone using a cane before so it was interesting for her to see how it was used and the reactions of others. 

One of the big issues I've been having is that when I'm walking, others have no idea I'm vision impaired and if I make a mistake crossing they will think I'm an idiot. I like the fact the cane is a way of saying "Hey, I don't see good, look out for me". This was evident when we crossed a main road, without traffic lights, but with an island in the middle (so we could go half the road at a time). This particular spot had been an issue for me because the road is so busy I can't simply rely on my hearing and limited sight. In a way the cane was like my indicator signal of a car. People knew to be mindful of me. We had a great experience, each time we crossed (we did it a few times!), when we were on the island, a person would stop the traffic to let us cross. It really was a testament to how kind people can be. These small gestures increased my confidence with crossing roads and also gave me more trust in those around me. 

We also noticed people's reactions when walking toward us. Each person we passed, even someone with a pram, moved off the footpath out of the way to let me pass. I don't know what I expected, that people would walk into me or make comments, but experiencing it first hand made me feel more at ease with the whole idea of using the cane and reduced the stigma to using it.

Mr Cane and I have gone on another date today, with similar success, and we are on the road to a happy and long partnership. Up until this point, I wasn't ready to accept the fact I may need extra help getting around and there is nothing wrong with that. Now is the right time for me and I will embrace it and continue to gain more confidence and independence. 

Selling My Independence

This week was a big milestone in my journey of acceptance. I am actually quite surprised that I did it and finally let go of something I had been holding on to so tightly.

Probably slightly melodramatic, but I sold my independence this week, my beloved car. I had bought my car brand new almost five years ago to the day. After driving around in hand me down cars (including a red, seven-seater Mercedes Benz station wagon from before I was born), I had finally splurged on a shiny, fresh new car. I was very attached to my car, it had travelled with me through so many life events and it was like my solace where I could feel calm and even have a cry. Ok it does sound like I was in a relationship with my car but since I'd driven for 10 years I had really gotten used to having it.

I should have stopped driving a few years ago although I didn't stop (and I in no way recommend doing this). I continued to drive locally to and from work. As my sight deteriorated I realised I had to let go, I had to give it up. In March this year I made the decision that I was going to let go, I wasn't going to drive again and I was going to literally start from the bottom and learn to be independent in a new way. This caused me great anxiety and stress and by no means has it been easy or am I close to being entirely independent. I grew to rely on driving, I never caught public transport, so I'm literally learning how to do everything again with poor vision. 

I tried to find a reason to keep my car - someone in my family would drive it, I could give it to my brother, we could have a spare car, but deep down I knew it was pointless. I put it up for sale a month ago, grudgingly. 

As the weeks past I still tried to find reasons to keep it and more people came to look at it. Once I found a buyer, the few days before they picked the car up I started to think to myself I should just keep it and I didn't want to give it up. The morning they came to pick it up, I paced around the yard and my anxiety levels grew. I knew I had to do it and I knew that once I did I would feel stronger.

It was actually easier than I thought (possibly helped my a massive envelope of cash). It was even empowering. I was proud of myself. I had let go. I had let go of something I had been holding onto for many years. I knew I could do it, that I could face this new chapter. 

And here I am. Car-less, less independent perhaps but with a greater level of determination. Of the years I have been battling Stargardt's, this week definitely was a big step for me. Onwards and upwards!

Increased Senses

A common question I get asked is whether since losing my vision my other senses have increased. Generally I would answer no, but lately I've noticed that my senses have been changing and adapting. This is probably due to being more aware of what is happening around me and being more accepting of the need to use my other senses more in every day life.

I would not describe myself as having good hearing, quite the opposite especially since I had ear problems as a child which have continued into adulthood. Since learning how to use a cane to navigate, I have had to tune into my hearing more to help me cross roads. I think in the past I just didn't pay attention to what was going on around me on an aural level. The first time I tried to listen to determine whether it was safe to cross I felt overwhelmed and had no idea whether I should wait or go. I was also not accepting that I needed to be using a cane and my ears, and this also played a role in having so much difficulty tapping into the sense.

Another big help to me learning to tune into my other senses is practising mindfulness meditation everyday. I started learning about mindfulness to help with anxiety and I was instantly hooked on it. I was always interested in meditation, using it infrequently, but mindfulness really resonated with me. It teaches you about being in the present moment and to be aware of your body and your surroundings. 

My favourite way to practice mindfulness is to listen to the sounds around me. I was shocked when I first tuned in and heard at least five different birds, all in the middle of a big city! I had totally forgot the existence of the wildlife around me! I also can hear the traffic (which is surprisingly relaxing), the trains which are about a five minute drive away and the bats squabbling constantly. This probably sounds lame and like I have no life but I actually enjoy just listening! I've always been a person constantly on-the-go and always engaged in an activity but I've actually learnt to stop and just be, and it has helped with accepting my diagnosis and also in aiding my adaptation.

It truly is incredible what goes on around us and within us, and tuning into it has been a rewarding experience. I'm learning to embrace just listening, not having to rely on my eyes, to experience the world in a different way. You don't need to see every detail, you can combine what you see, hear, feel and smell and that is just as satisfying as being fully sighted. 

Hope

Living with an incurable, degenerative disease which leads to permanent disablement and blindness is one of the hardest challenges a person can face. Doubled with the fact that the process usually begins in early adulthood when a person has discovered who they are and figured out their life goals and aspirations can make the situation even more confronting and distressing.

Hope can be a strong and powerful feeling that helps anyone going through this situation, and other situations, get through the day. But is there such thing as 'unhealthy hope'?

My main concern is when hope for a cure dominates everyday thinking and finding a cure is the only way someone can accept their diagnosis or find the will to continue on. 

The one thing for those who have Stargardt's, and any other inherited retinal disease, is that we may be losing our sight, becoming 'disabled' and 'legally blind' but we still have amazing, fulfilling, satisfying and successful lives. Our lives may be different from what we expected them to be, but I guarantee we will look back when we are older and think we wouldn't change a thing.

In saying that it won't be a walk in the park, but in life what ever is? I know myself struggling through another uni degree determined to complete my third degree as a 'legally blind' person and then ultimately completing my PhD will be one of the most satisfying moments in my life. People always ask me how I manage, and to be honest, I don't even know! It is literally pain and tears to get me to where I am and I still have a long way to go. 

I really want everyone to remember that a cure isn't the only answer for us, while it would be fantastic, our lives are still worthwhile and filled with incredible opportunities. 

Always stay positive and remember, no matter what the goal is, you can always get there, you may just have to take a different path to achieve it. 

Beautiful Art by a Stargardt's Friend :)

I'd like to share artworks created by Jenna who has Stargart's Disease. These are a few of my favourites.

She creates such gorgeous, emotional works and to think she doesn't have her central vision I can't believe how absolutely amazing they are. It is truly inspiring.

Thanks Jenna!

Donate!

Dr. Terry Diamond, who works in the same hospital I work at, is running 7 marathons in 7 days across Australia next week. He is doing this to raise money for the disease Retinitis Pigmentosa, which is similar to Stargardt's in that it is a retinal disease that causes blindness. He hopes to raise $100,000 for stem cell research for the disease and related diseases.

Here's the link to donate and support!

The Eye-Con Run