Hard questions that need to be answered

House keeping stuff:

1. I have looked into on-line shopping and coles does do it, which everyone probably knows. What you may not know is that they will not deliver unless you spend $50 or more. This is a big amount for one person, so I may have to do this once a month and just buy fresh ingredients when I need them and in small amounts.
2. I rang the Glen Iris council regarding the emergency button. They have sent in a referral and someone will contact me to make an assessment and hopefully this will happen soon.

Moving on…

On the 6th of June, the FD foundation is holding its annual event and is honoring seven people affected by the condition. All seven of us will be sitting on a panel and we each have to answer two questions. The first question will be answered by everyone:

What is the hardest thing about FD and how did you deal with it?

Now, looking at the question, I realize they are asking how did I deal with it. This implies that I have already dealt with the issue. More so, it’s been dealt with and is no longer an issue. Then again, maybe I’m reading too much into it.

The hardest thing I have faced is the deterioration of my walking. As far as I can remember I have always had problems with my walking – my sense of balance has always been off. Also, the messages from my brain to my legs haven’t been working as well as they used to.

When I was in school I was never able to do the 1.6k run. I always worried about going on school camps because I knew there would be activities I couldn’t participate in. Later on in my mid-teens my walking started to deteriorate even more and so I had to use friends arms for support when going out. In my early twenties, I don’t know how I did it, but I would walk to the tram stop and tram to uni. I did cheat sometimes and I got a lift to the tram stop. When I reached the campus I would have to walk in stages to get to my classes and I would sit down on benches or hold onto polls to rest.

In my mid-twenties I went to Israel with my parents and this is when we had the talk. I was unable to walk anywhere on my own, I would often fall and I would avoid going places because I was too nervous about what could happen. Mum and Dad had noticed all this and we finally discussed the fact that I have a disability and it’s something I can’t ignore any more.

In 2008 I finally went to see a physio and she recommended that I use a walking frame. As of today, I have been using a walking frame for just about two years.

So yes, I did deal with the issue, but it is time to review the walking frame because the breaks aren’t working and it’s hard for me to walk on even surfaces. I need a new frame before I go to New York so I will be as prepared as I can be.

This is my answer for the first question. It’s a straight forward answer and I have not included my emotional response to all this. I will say that it has been very hard for me and when I first got the frame I cried a fair bit. Two years on I am better but I still have my moments.

The second question is:

How has your family helped you?

This question will be answered in another post.


3 thoughts on “Hard questions that need to be answered

  1. Hi Tully
    After you mentined your New Blogsite – I could not wait to read it…and wow! awesome. Since we chated at length yestarday at this stage I just wish to say I hope your Yooralla article will be widely read as your way of saying difficult things – sometimes with brutal honesty – makes it easier easier for all of us to be honest with ourselves…and your passion for life and truth is illumination.

    Happy travel planning


  2. Hi Tully!
    As previously discussed, i checked out your blog, it’s fun to hear about all your thoughts. It sounds like you have a lot of things to organize and questions unanswered. I guess it will take time, but hopefully your blog will fast track the answers, help create more opportunities for you with networking and advice etc…
    I have some advice for you re the $50 coles delivery. Speaking as a chronic lazy person, (ironic ‘cos i actually LIKE supermarket shopping) If there is something that you want/need soon, the key is to stock up on other storable items. Eg, washing powder, toilet paper, tinned items, corn, long life milk, tuna etc. even stuff for the freezer.
    This may be a challenge for you (someone who i hear is somewhat of a gourmet chef) who may not WANT to have 40 plus packets of instant noodles in the cupboard… hm… anyway keep it in mind.


    • Hi Julie. I finally made an order and my main focus was fresh fruit and vegetables because it is hard for me to carry all of it upstairs. I think this is the best options, including things for the bathroom and kitchen.

      I should have you and Gaby over for dinner, tho I would be a bit intimidated cooking for a chef!!

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