Wednesday, September 3, 2014

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!





Tuesday, August 12, 2014

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. 


Wednesday, August 6, 2014

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. 


Friday, July 25, 2014

Audible Book Giveaway

I'm very excited to share that Audible has given free audio books to give away to five readers.

For those of you that haven't tried Audible, it has thousands of audio books, current and past, and you can access them on your phone or tablet through their easy to use app. I have been using Audible for some time now and without it I wouldn't be able to have continued 'reading' the books I love.

All you need to do is become a 'follower' of this blog (right hand side), and comment below with your name, age, condition and a book you'd love to have as an audio book.

You have until midnight Sunday 10 August to enter.

Good luck :)




Wednesday, July 16, 2014

The Finger Reader

Now this is one invention I am super excited about. Since I came across a news article about it a few weeks ago, I've been thinking of all the ways I could use it and how beneficial it would be to the vision impaired.

The FingerReader is a prototype developed by MIT and is a ring which reads printed text. It really is incredible. Personally, I despise using any magnifiers in public, so I struggle to read things or ask for help. My mind has come up with countless uses for the FingerReader:

  • I could actually read the menu for once, instead of making it up!
  • I could actually read the price on tags when shopping, especially clothes, so no excuses for spending too much money!
  • When I go to sign various forms, I could read through the document myself instead of relying on a dodgy person who really just wants my signature!
  • I could tell who the mail is for, instead of opening everyone's mail!
  • And the list goes on....
Personally, I don't find magnifiers useful for the above situations. I find that they are usually large, draw attention and time consuming as it takes time to focus on what I'm trying to read. 

I look forward to the progress of the FIngerReader and really hope it come to fruition in the near future.

Check out the MIT website.



Monday, June 23, 2014

Online Support Groups

I know I have been very slack with my blog and it's time I made up for it! I have been very busy having a love hate relationship with my cane, giving up driving and leaving my job. You could say I'm having a mid life crisis (at 27). 

Something I have been meaning to do for a while is organising online support groups where we can talk in real time no matter where we are in the world. This will happen through Skype and I hope to organise it on a monthly basis. 

I will mediate the groups so we can get the most out of it and we can discuss different topics/experiences at each meeting.

If you would be interested in participating, please send me an email with your name, diagnosis and location to seethroughmyeyes2010@yahoo.com.au or alternatively comment with the details below but I will need your email to contact you.

Let's get this going and connect to help eahother!




Friday, February 7, 2014

My cane adventures

I've had a cane for over a year now but haven't been brave enough to use it. My vision is further deteriorating and I decided it was time to accept the cane. I have an amazing mobility instructor from Guide Dogs who has been helping me learn how to get around using the cane.

A big issue for me is not feeling like I'm in control stemming from the fact I can't see what's in front of me and what's coming toward me. I know I'm a control freak so not being able to see where I am or what's coming up terrifies me and cause me anxiety. I've also realised than to cross roads I simply hope for the best which is not something I'd advise! 

Working with somebody is so beneficial, it is giving me the confidence to explore and feel comfortable using the cane. I've learnt how to cross a street, safe places to cross and to trust my ears more. I've also learnt how to use the cane for stairs which hopefully will prevent some of the bruises I have from constantly stacking it! Going up stairs isn't to hard but down is definitely a challenge with the cane and more practice is needed.

In my last session I walked down a main road near my house. I felt as though everybody was watching, of course I couldn't see them, but you get the feeling that people are staring. I was also thinking that someone who knows me could see me and I felt uneasy at the thought. Not so much that I'm embarrassed of my condition but I'm still getting my head around it. It's definitely a foreign feeling that's hard to describe unless you have experienced it. In a way the moment was like me coming out and saying 'hey I'm vision impaired'. I also made a comment about the impression I'd make, walking down the street in high heels with my Louis Vuitton handbag.. Definitely a sight to see!

I highly recommend talking to your local vision impairment organisation and getting involved in a mobility program. Guide Dogs NSW/ACT has been the most positive experience I've had on this journey. And most importantly, don't be afraid to accept help!