Often when I am driving to work I try to motivate myself to park my car outside the Arts Centre and then walk the rest of the way to work. But you know how it is, who wants to do something that they hate doing?

I came up with a list of excuses. The weather was too cold. It was raining. I was running late. I needed my car to visit a client. I had to run off somewhere straight after work. You get the idea…

Anyway, while I was writing my entry about my new years resolutions, I briefly mentioned my health. I chose not to focus on it too much because I was sure if I did someone was bound to hold me to it and remind me constantly and make me feel guilty and then it would never happen. No way was I going to allow that to happen!

In reality I know the importance of keeping active. As many doctors, specialists, physios, etc have told me, it’s important to continue walking as that will postpone me ending up in a wheelchair.

So while I was writing the resolutions, in my mind I tossed and turned with the idea to do the walk. And one morning it just happened.  My car somehow manoeuvred itself into a disabled car spot and I did it. The sun was out, it was 20 degrees and I had good walking shoes on. Scarlet was ready to go.

Walking across the bridge to Swanston street I looked at all the people rushing to work. No way was I going to do that. I took my time, stopped to look at the water, checked out the men in their business suits, contemplated buying a muffin and hummed Eye of the Tiger to myself.

Of course I made it to the office. No falls, no major fatigue. And when I reached the office I was beaming. I was superwoman for the day and nobody could take it away from me.

- This entry was written on Monday. It is now Thursday and I parked my car outside the centre and once again I did the walk. I think I deserved the two coconut cupcakes I just consumed!

That was about a year and a half ago and boy, has a lot changed since that first entry. Yet, I feel like I am coming back full circle. In May this year I will be flying on my own to meet my family in Israel for two weeks and then NYC for ten days, ending it all off with two days in LA.

It may only be the second week of the year and there is still quite a few months until I go away, but things have already started to happen and my choices have been affected because of my disability and chronic illness. If others can learn from my experiences, then I think it’s important that I keep a record of them.

Some of you may not know that I have travelled toIsraelquite a few times. Each time has been with my parents because we’ve always gone to see family. Most of the trips have been filled with family events, doing the tourist thing, etc. My last trip toIsraelI attended a support group for people with Familial Dysautonomia. This was my first time being in a room filled with others who had my condition.

Really there are no words to describe how it made me feel. I attended two sessions and I remember during one session the group facilitator made me sit on a chair in the middle of a circle. Each member of the group yelled out different words, describing how I believed people perceived me and let me tell you, it wasn’t positive. It crushed me even though I think the aim of it was for me to build a thicker skin. Who likes being called names?

That was the trip where the reality of my disability hit me and I had to acknowledge that it was time to get a walking frame. That trip changed my life. Not in a bad way, because if that never happened I may never have been able to take the next step of travelling independently. If I hadn’t of gotten the walking frame, no way would I have been able to get around the streets of NYC.

Anyway, I digress. I am writing about my previous trips toIsraelbecause when I flew there we had to fly with one particular airline – El Al. Not many airlines fly directly toIsrael, so we had to fly with Qantas toHong Kongand transfer to El Al. Usually changing airlines isn’t that big a deal and it’s quite manageable. However, because I need to use an oxygen tank when flying it impacts the choice of airline. El Al uses the old fashioned tanks which are too big to put under a seat. So, El Al needs to put it in the seat next to me and makes the passenger pay for that seat!

I don’t think it’s fair that I have to pay for two seats. And so with this in mind, I am looking into different airlines.

Get ready for a load of information and a bumpy ride!

For the last week and a half I have been trying to write an entry about my resolutions for 2012, but something has been holding me back. It could be because I am on holidays and I am lacking motivation. I am enjoying sleeping in – well sleeping in until 9:30ish and reading crime novels by George Pelecanos and Lee Child. Also, I’ve seen a couple of fabulous movies – Albert Nobbs and The Iron Lady. Or it could be because I am a little lost as to what I want to achieve in the New Year. Last year I achieved so much and left a few of those achievements under-developed. 2012 is the year to tidy things up and then attempt some new challenges.

So I think that means I have to do a run down of the year 2011 and consider where I want to head in 2012. Because you have been reading my blog over the last year and a half you may find this a tad boring, so if you wish to skip this entry I completely understand.

1. Writing. In 2011 I decided to branch out with my writing and so I submitted some of my posts to a few online publications. The ABC website Ramp Up published one of my pieces. Go to http://www.abc.net.au/rampup/ and if you search my name you may still find my piece. The Department of Human Services runs a website titled Divine which is all about disability written by people who have a disability. They published a number of my entries and when they started looking for a new group of journalists for 2012, I applied for a position. I was happy to find out about a month ago that I have been offered a contract. Who would have thought that I would become a paid journalist?
2. Leadership. Part of my work is to work with people who have a disability and help them develop their communication skills and advocacy skills. With my co-worker we run a course for five weeks and eventually the participants pass on their training to others. The thing is that I can’t help but think I need to develop my skills so that I have more to pass on to the participants. With this in mind I applied for a twelve-month leadership course where we are assigned a mentor in our area of interest and hopefully grow through this.
3. Radio. Mid last year I got it in my head that I could take on my own show on 3CR. I thought that I could talk about my love of food and movies but in the end I realised that a monthly hourly show was too big a task for one person and I was biting off way more than I could chew. So I am sticking with the Boldness for 2012 but I need to make more of an effort for my co-hosts and come up with topics that are current, relevant and political in the world of disability. This means that I need to keep up to date with the National Disability Insurance Scheme and other disability issues.

Of course there are all the other predictable resolutions, such as health, relationships and employment, but I want to keep the specifics to myself and if I ever do achieve those resolutions I may inform you of them.

It is important that I make the most of 2012 and enjoy it as much as I can. I hope that you all have a great, happy, successful year and I would love for you to share your resolutions with me. Feel free to leave a message on here or email me at tzygier@gmail.com. Let’s work through these resolutions together.

Happy New Year!

On Sunday I visited one of the Yooralla supported accommodations to attend their Christmas party. One of their residents is a participant in my peer support program, Amy* and her volunteer, Jack*, wanted to attend the party to celebrate Christmas with her, her house mates, the workers and her family. I wanted to join in on the celebrations.

When I arrived there, the volunteer hadn’t shown up yet, so I introduced myself to her family. One of her brothers, Sam*, was there with his wife and their ten week old baby, Miller. She had such beautiful blue eyes and was very alert.

Amy is pretty much non-verbal, but her brother and sister-in-law were chatting away with her, cracking jokes about past Christmases and so forth. She smiled a bit and laughed. Sam fed her some quiche and sandwiches while the sister-in-law and I chatted about our backgrounds. She mentioned how she used to be a chef and I mentioned how that used to be my dream job and chucked about how it just wasn’t meant to be for me.

Jack showed up and he chatted away with Sam about the year and how the development of wheelchair was going along with Amy’s communication device which just wasn’t working as fast as it should be. Sam got all excited and whispered to us that he’d brought his sister an IPad 2. With her head device she would be able to send emails to him and even Skype from it. I learnt that there all these apps that enables people with communication issues to be able to use it as a device and could even speak for people. Until now, the only time Amy had access to these things was when she attended day services on a particular day when the IT guy showed up and he didn’t always show up.

We then moved on to talking about their family. The brother mentioned how much she loves her step-mother and that she was anxiously waiting for the step-mum and her father to show up. And when they did show up, Amy’s eyes just lit up and she jumped in her wheelchair.

I looked around the room and saw the other families interacting with their relative and everyone was in such cheerful moods. The enormous amount of food was devoured and Christmas crackers were torn in two. When the presents were opened, the cameras went off and there were squeals and laughter throughout the room.

Sam excitedly beckoned Amy over to him and they unwrapped the present together. There were no squeals of joy or excited jumps, but there was a big smile and Sam and Amy played around with the IPad while he explained to her all the cool things she could do with it, including Skype with her niece Miller.

There’s something really nice about seeing people getting excited about the small things, like a visit from their family, rather than material things that end up breaking down anyway.

It has been a crazy couple of weeks and I haven’t really had the time to write an entry. Even now my head is swimming and all I want to do is sleep for a week. I have started a couple of entries but I haven’t been able to focus and they all seemed wishy-washy.

One entry was about my identity. As you may know, I have a chronic illness called Familial Dysautonomia. It didn’t start off as a disability, but rather I had issues with my blood pressure, my spine and fatigue. The condition is degenerative and manifests in different ways in every person; with me it affects my balance and walking. My walking started deteriorating during my teen years and eventually in my late twenties I had to get a walking frame.

Using a walking frame hit me hard and I remember the first day I got it. I decided to walk around the block near my house, to see whether or not I could make it, because for a while I hadn’t been able to. You may know I like to challenge myself and so, I took the challenge on with determination.

The walk took a while and I made plenty of stops. As my walking frame comes with a seat, I sat and took in the scenery while I caught my breath. The walk was tiring and hard but it was liberating at the same time. I had this sense of independence and freedom. No longer did I have to walk arm in arm with someone as I stressed about falling over and bringing them down with me. So yes, I was happy while I walked and smiled most of the way, but something clicked when I eventually made it home.

No longer could I deny my disability.

People were going to be able to see 100% that I had a disability. Until then I could hide it to an extent and still classify myself as “normal”. But walking with a frame meant that that wasn’t the truth any more. When I got home the crying began. It was uncontrollable and there was nothing my parents or my friends could do to fix it.

This happened around four years ago. At around the same time I started working at Yooralla. Suddenly I was immersed in the world of disability and I couldn’t get away from it both professionally or personally.

Over time I began to accept my new identity and I even started to embrace it. I began my blog and I put my disability out there. People were reading about my daily struggles with the frame, the falls, the tiredness and they were getting an insight into the world of disability. People were learning something from my blog and it felt good. I was proud of myself.

Then I turned to radio. It had been a secret wish of mine to be on radio and so I contacted a production company that specializes in disability. They had a position available for their radio show and I stepped in without any training. Suddenly I was on a monthly show, talking about disability and talking with co-hosts who both had a disability. It was scary at first but eventually I began to enjoy it and even began learning more about disability.

I began applying for courses in leadership training and my referees said that I was highly regarded in the disability sector. Organisations were asking me for information on the work that I do and for help with setting up their own programs. I was attending forums on disability and sexuality and I am on advisory committees with other members who also have disabilities.

I still have my old friends and my other interests and disability hasn’t consumed my world but it has enhanced it.

On Friday my radio show broadcasted live from Federation Square in recognition of International Day for People with a Disability. We interviewed paraolympians, short-statured basketball players and we had music played by people with intellectual disabilities. I saw clients and friends from my forums and committees and colleagues from work.It was a sunny, fun-filled morning and I felt like I was part of a community. 

Last week I ran into a couple of peers from high school, one of whom actually tutored me in English. She was (and is) extremely smart, beautiful and incredibly nice and I thought she was totally out of my league to be my friend. Inevitably we grew apart, she moved overseas for a couple of years with her partner, got married and now has a baby. I wanted to get in touch with her when she was going through these milestones but I didn’t know how and honestly, I thought she wouldn’t respond, so I left it.

At the end of last year when I was going through a very hard time I received a letter from her in the mail and she wrote about how strong I was and would be able to get through this. Her letter really helped me and actually helped pull me through that hard time. She never even realised or found out because she hadn’t included her contact details.

I made a half-hearted attempt to get in touch with her but I gave up after a couple of months and forgot about her. When I found out she was pregnant I tried again but to no avail, it wasn’t meant to be and I told myself that we were both at different places in our lives and she had other friends going through similar experiences to her, so she didn’t need me.

Last week I had taken myself out for coffee to try and motivate myself to write a new entry, but I got distracted when I saw an attractive woman pushing a pram with an older woman by her side in the distance. As she got closer I couldn’t help but beam and get excited. Her mother said hello and we chatted briefly but in all honesty I was too focused on my old friend.

You know those hugs you get from some people that just radiate warmth and you could hug that person forever? I have a couple of friends who give hugs like that and they aren’t even my closest friends. Well, this girl had one of those hugs and it made me realise that there was still that connection from high school. Sometimes those connections never go away, even if you haven’t seen that person for over ten years.

It was lovely seeing her and catching up on everything that has been going on in her life. I shed a few tears when we talked about last year and then I laughed when she told me she knew I could write and she wasn’t surprised with my success. Of course we said we would stay in touch and catch up properly, but even if we don’t that’s ok. It’s just nice to know that despite the time gap, we’re still on good terms and we’re still friends.

You see a lot of negativity travelling on public transport, Bogans swearing and talking about the latest way to rip off Centrelink, The homeless begging for small change to feed themselves, or young teenagers hanging around outside Flinders street station smoking instead of going to school or work but sometimes you get a glimmer of hope….here is mine.

Yesterday I went out for lunch with a friend in the city. We had the breakfast menu even though it was 1pm and we chatted about a range of things. TV shows, Movies, going out, relationships, work and our disabilities. We are both proud people and proud of our disabilities but there was a bit of bitching about what we can do and what we can’t. Lunch came to an end and we both said goodbye and I headed down to catch the next train to Narre Warren. Sipping on my coffee I have just brought hoping it will keep me warm on such a cold rainy day in Melbourne a boy in a wheelchair pushed by his mother came out of the platform lift and had puzzling looks on their faces.

“Where are you off to? I asked as I noticed that the boy was non-verbal at the same time. “Springvale” The boy’s mother replied. I lead them to the right end of the platform as it was the same train line as mine. They both seamed lovely and the boy’s mum was a breath of fresh air and wasn’t your stereo typical over-the-top-wrapping-in-cotton-wool or one of those mums who complain about how hard it is to look after a child with a disability. This mum just loved her son and wanted the best for him. We waited together as the train stopped at the platform. It was the first day the two of them have ever been on a train before and they needed my wisdom of being on the train a 7 times week for the last 6 months to show them where people in wheelchairs usually sit and how the chairs fold up. We chatted a bit then got separated as I offered my seat to an older lady with a walker. I watched the boy and his mum for most of the way. The mother asked the boy if he wanted to listen to some music and with the nod of his head he said yes. The mother help him put the ear phones in his ears as he also had limited hand function. I then saw something that made me so happy. The boy smiled and started to dance in his chair. The old lady who I gave up my seat for was getting off the train. Being intrigued by this young man I went back to sitting next to him and we both just listened to music, each with our headphones on. I was getting lost in a song I was listening to and looked away for a few minutes…. I heard the two of them having a conversation and they now had his communication book out. I turned down my music and pretended the song was finish and put my Ipod away. With the communication book he was trying to say “Hi, my name is Nick”. His mum looked puzzled and so was I but almost at the same time we put the pieces together. Nick was starting a conversation…..WITH ME!!!!!!!!!!!! After his mother pointed in out more clearly I replied “Hi Nick, I’m Jarrod” his mum was so proud and happy that nick was engaging in conversation and even more so for starting a conversation! I didn’t want it to end there so I quickly came up with something to say and I asked him is age. I knew his mum was awesome and everything but I was waiting for her to tell me his age as so many parents with non-verbal kids do but not this mother! She helped nick navigate through his communication book to the numbers section and asked him “Tell Jarrod how old you are and she went through the numbers and when she got to 9 he smiled and noded”. Sadly the conversation came to an end as my new friend (ok, maybe not my friend but my favourite person of the day) Nick and his mum where getting off at the next stop. I eagerly said “It was lovely to meet you Nick, Have a great day”.

I put my headphones back on and smiled the rest of the way home…. If I can have a conversation with a 9 year old boy who can’t talk then those Bogans don’t need to swear, the homeless should be able to find somewhere warm to sleep and get a nice meal and the kids who hang out at flinders street all day can all go back to school and man the up! We can all get by.

http://rubyconnection.com.au/members/15318-tully-zygier/articles

Who would have ever thought that I would become a published writer!