Sunday, July 25, 2010

Re-learning with no expectations!

What a tough week! My muscles have decided they have had enough and don’t want to participate anymore. This has happened just as I’ve decided to get on with life and dive into lots of work.

I am in shock I think??? Is this normal? Was I naive about this operation? How can I help myself?

The benefits are still there if I can see them through the pain that is racking my body. My left arm and leg feel strangled and there is an adrenaline rush coursing through my whole body making it feel like hot liquid sluicing (really wanted to use that word in a sentence) around.

The only thing that makes my body feel okay is if I do nothing. This is not an option as the first paragraph tells you because of the decision I’ve made.

The doctor seems to think I need my device adjusted which I so agree with and I also need to let my muscles re-learn things. This is big! At the age of 36 we normally know our strengths and limitations – now I don’t know anymore! So, wow!

I might as well wipe the slate clean and start again – no expectations!

- Martha

Monday, July 19, 2010

Weekend Away

This weekend Andrew & I attended John’s, Andrew’s brother’s wedding. It was my first time away since my operation. The weekend went very well and a lot of people noticed a change in me which is positive.

We had a family dinner on the Friday night which I was comfortable at. The wedding was on Saturday. I actually sat still in the church and didn’t have any panic moments that I might move too much – it was great! The reception was easy also. I had to leave at 10pm though as I was feeling a lot of fatigue and I started to feel anxious. On Sunday we had breakfast with Uncle Pete, Aunty Viv, James, Jess & Sime. It was fun.

We then came home, had a nap and then went and picked up Pupa and Bronte who had had a big weekend also.

It was great to feel the changes while we were away. The fatigue however, was frustrating. I wonder when that will go away?

- Martha

Sunday, July 11, 2010

Just Relax…

It is nearly 6 weeks since my op and I think I’m feeling quite over myself.
I know I had to be careful so I healed well and I was watching my every move to see if I have improved – which I have, which is nice, but the novelty has worn off.

I want to pretend there is nothing there and get on with it. I am ready to roll up my sleeves and get to work. There are websites to be made, guests to be found for the radio program, books to read, blogs to write, people to have a cuppa with, places to see…

I want to get my focus off myself and go and be with others and do with them. If anyone has any ideas of what I can do for you – please let me know.

- Martha

Wednesday, July 7, 2010


“There are some things success is not, it’s not fame, it’s not money or power.
Success is, waking up in the morning so excited about what you have to do, to literally fly out the door. It’s getting to work with people you love. Success is connecting with the world and making people feel. It’s finding a way to bind together people that have nothing in common but a dream. It’s falling asleep at night knowing you did the best job you could. Success is joy and freedom and friendship. And success is love.” – FAME

I think I am successful. What about you?

Life is full of surprises!

If someone told me two years ago that I would be where I am today medically and fighting to get this op into the Public hospital. I would have said, “In your dreams!”

I am really surprised that the operation and recovery went so smoothly. I honestly thought I would be out of action for some time. Instead I was ready to go again in four days??? There have been a few ups and downs. Having the lesion on my brain that made me instantly better was really frightening. I missed my twitches. Before I got used to the new ‘me’, the improvements disappeared because the lesion healed and I felt sad. Now I have slowly progressed and it is easier to deal with but harder to see the improvements.
The improvements I feel are:
I can sit quieter
I can feed myself easier
I can push myself easier
I can crawl easier (the stairs at fusion don’t take so much out of me).

Life is so different and although it’s exciting, it’s scary. I feel like a baby discovering my hands again. What are these and what can they do for me?

It’s hard being ‘wired up’. About two weeks after my op I thought, ‘What have I done? I have foreign objects in my body.’ I think its going to take a while to be comfortable and confident with them.

It’s hard not knowing what to expect and I am determined to count my blessings and appreciate what I’ve got and not look at what I might get, or what I haven’t got yet. It’s also hard because I do want to strive forward and try and do new things. I still want to walk, even though no one with my disability that has done DBS has walked.

I have no regrets and if nothing changed from this point on I know that I am a lot better off. There is another part of me that doesn’t want to let my doctor down and I also want to give the trial good results. Ultimately it’s not up to me. It’s up to how my brain responds to the device and how my brain re-maps itself. But ultimately it’s up to God and how he wants to use me - I’ve made peace with this. I am just a tool of His - a good place to be.

Fighting to get this op into the Public hospital
Ok, so I hate injustice, especially in the medical field. Working with the TV crew has been great and to know they are taking this cause seriously is wonderful!

What is it with me and people lately? I love them. I keep meeting these amazing people with beautiful hearts. Is it my age? Is it the brain surgery? Is it God? What a privilege. I’ve come to realise that my goal in life is to ‘love’ people and to encourage them. Great gifts everyone deserves!

- Martha

Sunday, July 4, 2010

He Takes Away and Gives

Today at church we were singing a chorus which says ‘you [God] gives and takes away’. Someone stood up and said, actually, ‘God takes away and then gives’.

I was reflecting on this and thought, that is so true. God did take away the probability of motherhood and gave me Deep Brain Stimulation. Wow! The question is: Would I give up Deep Brain Stimulation for motherhood? Absolutely!! But I am happy with what I have been given and I am determined to make the best of it.

I am curious as to where this is all going to lead? Deep Brain Stimulation, Sunday Night… How much more independent will I get? How much of an impact will the Sunday Night show make? Only time will tell…

The saying that one door closes and another door opens is true also because you can’t see a door opening while you are busy/content in a room!

- Martha

Saturday, July 3, 2010

Equity and Fairness

This afternoon I spent the time with the ‘Sunday Night’ crew filming one month after the operation.

I spent some time being interviewed by Dr John and it was amazing to talk about the improvements. How being a lot stiller and quieter has brought about freedom. We also taped me making a sandwich for Sophie (the producer) which Dr John ate half of.

In the interview we spoke about “Equity and Fairness” which is the whole reason why I have agreed to be part of this documentary. I want Deep Brain Stimulation to be available in the public hospital so that all people with Dystonic Cerebral Palsy can access this operation if they choose to do so. It was really nice to know that Dr John is behind this cause and that it will be spoken about so that people will hear about it and change may occur. It is about making the access of this operation equal to everyone so all have a fair go at accessing it.

Australia used to be proud of having everyone equal and that all were equal to receiving treatment that is out there – this has to include medical treatment. I want people to remember that

- Martha