Guest Post from Tori Martinez

What I Learned on My Vacation

It's been 17 months since my traumatic brain injury, and if there's been one constant in my life during that time it's been doctors. Each week, I see multiple doctors and therapists several times a week. Some weeks, I have two or more appointments in one day. Other weeks I have an appointment each day of the week. Sometimes it's both.

I've come to know my doctors, therapists and the medical staff in their offices very well, and have formed very good relationships with almost all of those I see regularly. They have become very much a part of my life and, without question, an integral part of my ongoing recovery process.

But - and there's always a BUT - seeing doctors on such a regular basis can also begin to wear on the mind, body and spirit. Even though I know I need them, it often feels like my life is consumed by medical appointments, insurance costs, confusing explanations of benefits, and the overwhelming sense that this is not what life should be all about.

A little over four weeks ago, as I was preparing to leave for a three-week vacation in Europe to visit with family and friends, I was in a very bad place emotionally. I felt overwhelmed with my conditions caused by the TBI and consumed with fear about the financial pressure all my treatments have put on us.

I had been on vacations before since my TBI, but this one was going to be an especially long one, and I was scared of many things. Would I feel miserable and ruin the trip? Would I run out of medications? Would I trip and fall in a foreign country? What would I do without my doctors, therapists and TBI friends and support groups?

Now that I've been home a week and have had time to reflect, I realize what a blessing the vacation was and how much it did to increase my confidence and sense of independence and liberation. It's not that I didn't have rough times, but I realized that I had the tools to deal with them, as well as the patience and support of my husband, family and friends.

Surprisingly, I took far less of the pain and anxiety medications than I thought I would need. My balance and coordination at good times was decent even on the roughest old cobblestone streets. At bad times, I managed by pacing myself and holding on to David. Even in big crowds I could tell that my anxiety levels were lower than they had been in the past. At times, I was enjoying myself so much I didn't even register anxiety or panic.

Most significantly, perhaps, was the realization a few days after we got back that I had managed just fine for three weeks without doctors and had more than taken for granted how wonderful it was to be free of any medical appointments! Granted, by the time I went to the neurologist, I was more than ready for my monthly nerve block injections for my pain, but even then I discovered that I needed fewer than in the past.

As my neurologist said when he demonstrated why I no longer need the nerve block injections in my forehead, but now only my neck, shoulders and back: "You've graduated to the next level."

Yes! I've graduated in many ways, I guess. And my vacation was a turning point for me. It helped me take a step back and see the transition more clearly and with a fresh perspective. I'm far from "cured," but I am improving, and that is a tremendous blessing made even more so by the recognition of it.

While I was away, I also saw one of my ambitions come to fruition: to publish a book. For years I have been writing historical non-fiction articles for magazines, web sites and blogs. Now I have a book! "An Unusual Journey Through Royal History" is the first of what I hope will be many books that I publish. Lord knows I'm not going to let my TBI get in the way of my hopes and dreams, not while I have an ounce of strength left in me!

To me, all of this says so much for what we as TBI survivors can achieve. I know so many TBI survivors who are doing wonderful things with their lives. Whether it's publishing a book, hosting a radio program, serving as an advocate, running across country, moderating an online support group, being a great parent... I could go on and on.

Sure, doctors have a lot to do with our recoveries, but doctors can't heal us without our cooperation or make us determined to move forward with our lives. They are like parents who do the best they can when we're in their care and leave the rest to us.

The bottom line is that those of us who have survived TBIs are survivors in endless ways. We are people who don't give up, and our immense challenges make us stronger, more resilient people. We just need to take a step back sometimes to recognize how far we've come in our individual journeys and see how much we've achieved.

Because Every Australian Does Count

Thanks to Joanna Nicol for her insight on the recent National Disability and Carers Congress and NDIS....her blog can be found here: http://willowdove.com/blog/

With apologies to my international readers this is about a very important political movement happening here in Australia to help people with disabilities cover the living costs of having a disability in an enabling way I would really appreciate it if you are happy to refer this post to any Australian that you know. Thanks. Joanna

Part of the reason that I was in Melbourne this week was to attend the National Disability and Carers Congress.

It was an interesting exercise in people watching, as well is a great deal more. Most of the people attending were service providers who, it has to be said were unsure what to do with me. I was one of about 25 people who use wheelchairs, and have made a business or, like me, represent a service that seeks to improve the lives of people with disabilities and their carers. This was among 1000.

The Disability and Carers Alliance is not something that I was aware of. I’m not sure how long it’s been around. But it struck me to some degree that the alliance, however old or long is a tenuous one established to get everybody on the same page and fighting towards the National Disability Insurance Scheme. This is something that although it smells a little bit like the latest silver bullet, in a similar way to the development of the now endorsed Disability (Access to Premises–Buildings) Standards, I think this might well have a very good and profound impact on the living standards of people with disabilities.

That is of course if like all things we can get the balance right. The balance between individual freedom and flexibility to choose and the unavoidable budgetary constraints, which means that it is unrealistic, unworkable and unfair to expect a blank cheque to be given out to every individual who has a disability.

The biggest thing that impressed me was the business case and the fact that the  Productivity Commission could see the business case. Without compassion to human rights, social conscience, “well we’re really should because it’s the right thing to do” type arguments,  these people who in one case had nothing to do with disability, could see the usefulness of including people with disabilities and increasing both their participation and comfort for a mere 12 ½ billion dollars.

That isn’t a lot of money really when you consider that the current cost most of 6 ½ billion doesn’t include the people with disabilities in the country get no government assistance with the costs of their mobility, communication and self-care needs and are being simultaneously vastly underutilised.

I was pleased that after the rallying cry, the first real order of business was, to examine the cold hard facts and actively for the time being avoid  using the soft fluffy arguments, which aren’t always the most useful, although they are often the first to be drawn on.

I will no doubt have more to say about the Congress and the NDIS in coming days, and onward in the lead up to government response which is due by the end of the year after the Productivity Commission gives the government its report in July. the government then have until November to respond.

In the meantime, if you believe that people with disabilities have the right and responsibility to make a contribution, and then every Australian counts, could you please go to this website and with your three quick clicks say so?

For another argument ABC Ramp Up has a guest post from one of the conveners of the Congress.

This is the first time since the  International Year Of Disabled People in 1981,  that I have seen such an opportunity to get the community of people with disabilities in whatever form and our friends families and supporters politically and socially mobilised to make a difference. Whatever happens at the end of the year, that much I am proud of.

Guest Post from Carl Thompson

Carl talks about jeans, super star signers and 'mocktails' at the NDCC...... oh and if you squint at the pic below, i'm pretty sure you can see a dude wearing jeans... he's standing behind the guy in the black suit facing us....

 

 

Being an Adult at The National Disability and Carer Congress

Being an adult is something new for me, but I had my first real attempt at adulthood during the National Disability and Carer Congress yesterday. As it was my virgin experience attending an adult conference I was excited for potential highbrow mingling, cocktails, and of course the discussion itself. Many aspects of my first conference lived up to my expectations, and one or two things didn't.

The speakers were great, I won't lie. And I'm including the politicians when I say the speeches were exciting, something not normally said in today's tightly scripted political climate. The standout speeches though were made by those directly involved with the issue of disability and their carers. It was obvious that these speakers had lived experience to draw upon, and this was palpable in every word spoken.

But as mentioned, even the politicians inspired confidence in me that real reform in the disability sector may occur. Still, as many fellow people with a disability would attest to, politicians have often pledged support but failed to deliver. Yet in this case we have what they promised on camera.

I am not going to talk further about the content of the congress in this blog entry, no doubt it will be covered thoroughly at ABC Ramp Up, and hopefully the general media. Instead I'm going to discuss the many strange things that piqued my interest. I'm sure if you have read my blog before you'd understand that I am not really normal, so you wouldn't be surprised that I notice some strange phenomena and made some odd observations. The conference was no exception.

Firstly, it was a bad move for me to wear jeans. Now I'm not one for fashion, but being at a height level with many people's legs I noticed what was worn by the vast majority of those attending the congress. No one was wearing jeans, except for me. Major fashion and decorum suicide there on my part.

Secondly, interpreters proficient at sign language are definitely the most amazing people in the entire world. I'm ashamed to say I tuned out when listening to some of the inspiring speeches and instead gazed at the awe-inspiring interpreters with a permanent smile on my face, marvelling at their manual dexterity and drama skills. Seriously, one lady deserves a starring role in a blockbuster film, and a job as a professional juggler - preferably both at once.

Thirdly, I have never seen so many wheelchairs in the one place in my entire life! Neither had the majority of staff I would hazard a guess. Thankfully, and contrary to many electric wheelchair driving stereotypes, there were no major collisions that I could detect, and it was actually relatively easy getting around Etihad Stadium.

Finally, unfortunately I came to understand that the cocktail party at this function did not actually involve cocktails. We were instead served rubbish beer and house wine in their place. You can't make cocktails without spirits or liqueurs, fact.

But with that said, the cocktail party was definitely the most productive part of my first adult conference. Beer and wine are social lubricants that encourage people to chat and mingle, often with complete strangers. After a couple of wines people must have forgot I was wearing jeans and they began chatting to me. It was great meeting new people and forming new connections.

Even better than the stirring speeches and amazing interpreters was the face-to-face human interaction with other people passionate about the issue of disability rights and reform in Australia. This aspect was definitely the highlight of the National Disability and Carer Congress for me, and I can safely say for many others.

On the whole it was a good experience being an adult, I just have to remember not to wear jeans next time.