Tuesday, November 20, 2012

On Friends, Real Life Meet-Ups & 80s Music

What do outdated music lyrics, healthcare and Social Media have in common…. 

For so long it seems that I have been trying to figure out the answer. That was until I realized that I didn’t care to discover it. 

So much of living with a chronic illness is a game of hit and miss. We spend hours of our lives in doctors offices and crunching facts and figures. We adjust medical regimens, juggle appointments and split hairs over minute detail, all in the quest to find the “perfect” balance 

The medical world is filled with buzz words that often filter through to our lives as patients. I hear the words “consumer”, “pharma”, “research study” and “best patient outcome” and my eyes start to glaze over. The fact is, I am not at the coal face of medical research and I never will be. I am just an “average Joe” with average needs. The need to be accepted, loved and understood. For me these are issues compounded by living with a chronic illness. 

Backing up a couple of years I must have been a model of a “noncompliant patient”. Ignoring all of the best medical advice and the words of longsuffering friends I found myself getting sicker and sicker. With the passing of time my world became smaller and smaller. From having so much to live for, my goal became getting through to the next week. As weeks passed and little changed I dreamed of making it through to the next day, then the next hour, until eventually all I longed for was a death that would not come
With very little to no eyesight left, my world had well and truly fallen apart. Unable to go out, to drive or to work I soon found my closest friends abandoning me. Coming to terms with a chronic illness and the rapid onset of chronic complications it seemed I was all alone with nowhere to go.  Defeated and detached from all means of emotional support I quickly sank into the mire of  depression 
Here is where I found Social Media. It was not about folk moping around feeling sorry for themselves but real people. Real people living their real lives. Unable to do much else, I drank in their virtual presence. For the first time in a long time people took an interest in me. They understood me not for my medical condition but for all of me, my warped sense of humour, love of all things 80s and the physical toll diabetes had taken on my body. 
Somehow being amongst friends I began to take an interest in my own health. There was no gun to my head, no threatening words of medical professionals just the realization that for the first time in too long, life was worth living. That there were people who cared about all of me, who in turn I cared about.  A friend of mine captured my first real life meeting with many of these folk last year n Kansas City. Thanks to Sara from “Moments of Wonderful”   I have included a link to that here 
Social Media is connecting the dots. It is bringing together people who share a common condition and taking their minds off that condition. It is empowering, eye opening and life transforming. Add to this the input of pharmaceutical companies and health care professionals and the circle is complete.  
This week Australia held its first ever Diabetes Social Media Summit. It was an opportunity for a group of Australians to sit around a table with representatives from pharma and medical professionals and share stories. It was no hollow talk fest filled with buzz words but an opportunity for individuals with an online presence to connect in real life.  
While the many stories to come out of the summit are yet to be told I came away feeling excited and empowered. I’m excited to see so many people singing from the same song sheet. I’m excited to see Social Media bringing more people in from a world of isolation and confusion and empowered to do more to expand its influence. 
So the frivolous tweets of 80s lyrics continue but now they continue with a new passion. I feel the tide turning and folk coming together We’re putting behind the petty differences that so often separate us and uniting to help each other. We’re providing a network of support to fall back upon in times of crisis and a word of encouragement when it’s most needed.  
Diabetes Australia Victoria paid for my travel and accommodation to this Summit. The words here are my own and I was not obligated to write about the event



Thursday, October 18, 2012

Trouble in Paradise

Occasionally try as I may to avoid it, there are troubles in my tiny world. This week has seen it's fair share.

I consider myself very blessed and "lucky" in nearly every respect. I have no real responsibilities, a job that allows me a regular income and enough "tech" gadgets to keep me connected to the cyber world. With the passage of time I have grown more comfortable with my low station in life. While I battle away in a dead end job with no real career prospects, I appreciate every minute of it having lost that ability for so long with a list of medical issues.

This week has driven home again just how tenuous my grip on "health" is. It all started with an incorrect number. The incorrectly noted third digit in my phone number that prevented my doctor contacting me directly. My usual host of blood tests had shown some alarming results....enough to send my endo into a frantic spin trying contact me. With my nominated next of kin out of the country and having not updated my address, things soon got out of hand. When said next of kin arrived back on Monday I received a call to hightail it in to the doctors in the morning.

Cutting to the chase my A1C is all kinds of dysfunctional, there are unexplained anomilies in other areas and I have once again boarded the carousel to medical oblivion. Fortunately I have long ago trodden the path so I am ready for what lies ahead. More tests, abnormal results, no firm diagnosis and the inevitable advice that the damage of years past cannot be undone.

Frankly I'm a little sick of it....truth be told I'm very much sick of it. I have no qualms with medical professionals. I consider myself very blessed to live in a country with an amazing public health care system. I just get sick of always running into dead ends. I'm angry at myself for the years of "diabetc abuse" and getting unwelcome reminders just serves to reinforce that fact.

I messed up and I want a take back....

I want to take back the wasted years. Take back the health that is so far from me. Take back the disregarded advice from friends long ago and start over. Unfortunately the real world does not allow for such take backs. I have made myself a medical bed and I must now lie in it.

I'm tired of getting old. I'm tired of being single and I'm just plain tired.

I'm not sure if there is a solution for every problem, in truth I don't care. I just want to take some time being mad; mad at the world, mad at myself, mad at my boss, mad at my rapidly ageing body...just plain mad

So here I am. Single, mad and tired. Let's see what lies around the next corner..

Monday, October 1, 2012

There's something about...

There's something about the open road that defies description. The feeling of the ground rushing by under you, of the path opening up around a bend, of sunrise on a distant, unobscured horizon.

There's something about the rushing breeze through your hair on a wind swept beach. The sound of the crashing waves, the deep blue of ocean waters, the yellow sand stretching out for miles on end.

There's something about time spent with close friends. The irreplaceable feeling that someone on this lonely planet understands your messed up life. A moment of connection where secrets are shared and in the process problems are halved.

There's something about music and film that releases pent up emotion. A moving guitar solo, an emotive scene or a poignant silence. There's something about a well constructed song that carries you to a different place. To a moment decades earlier, to a fond memory lost in the distant past..

These are the things that I strive for. Amongst the many unfulfilled dreams that lay strewn across the road of my life, these are the things that make it worthwhile.

I may never arrive, or actually approach a destination but for now I'm enjoying the open road. I'm holding on to each moment. I'm savouring the miraculous and finding meaning in the mundane. I'm basking in the warmth of close friends and awaiting the next twist on the unchartered road ahead...

Saturday, September 15, 2012

Moving goal posts

I feel the goal posts moving and it’s making me uncomfortable. 

It seems no matter what I do or where I go, I keep looking back to the past. To blindness. To vitreous bleeds. To cataracts. To DKA. 

Sickness is an incredibly grounding experience. It forces you to rethink your priorities and set new goals. 

For me, many of these goals were small almost tiny milestones. Just one more day. Getting through to the next hour. Enduring another sleepless night. The boredom and mind numbing feeling of being house bound and unable to navigate your way to places like the television or the radio. 

Arriving for my first ever consult with an ophthalmologist, I cut a sad and solitary figure. Weeks of unsuccessfully wishing to die had led me to that appointment. At that point I was uncertain if I would ever regain my sight. To be honest I don’t think I really cared. I had fallen so low and so far I had lost track of what was normal or what was real. All I saw were dark lines in my vision and dark shadows obscuring the future. 

As the weeks became months I began to dream of a better day. Consult after consult seemed to indicate that the impossible could be achieved. That through surgery and intensive LASER my vision loss may not be permanent.

I dared to dream. For the first time in a couple of years I HAD a dream. It was a tiny “light” but it was real and I ran with it...
Four months from that first consult I lay in a pre-operative ward awaiting a vitrectomy. Having seen so many things go wrong, I tried hard to keep my hopes in check. To take things a day at a time until hours later I emerged from surgery. 
After more months of waiting and two more surgeries I eventually emerged with “new” eyes.  
I COULD SEE…..and all I wanted to do was shout from the roof tops and sing. To get into my car and drive. To stand on the beach at sunset. To let the soaking rain wash over my body. To breathe in the fresh country air on a brisk winter’s morning. 
I was unemployed and barely alive but I could see and that was enough for me. I was blissfully happy and nothing could wipe the smile from my face. 
I literally emerged from that process without a worry in the world. I didn’t care what people thought of me. I didn’t care about the horrid state of the economy. I didn’t care that I had fallen years behind my peers in achieving career goals….heck I didn’t even care that I was old and single….
I could see
I could see
I could see 
Having said all of this I have lost “sight” of my new life. I gained my vision but lost my sight. 
I have lost the feeling of wonder at taking in a sunrise. I have forgotten the joy of having and being able to go to work. I have forgotten the pure exultation of walking in the rain and moved on from moments of connection with people that far out rank career progress…
 So the line has been drawn. 
I’m taking the time to remember. I’m taking an occasional day off to bask in the sunshine. I’m taking road trips just because I can. I’m forgetting my station in life and dead end job that I might appreciate the things I once passed by.
I am alive and it is good….


Tuesday, September 11, 2012

Here I go again

Getting old is no fun. Getting old with complications from a chronic illness is miserable and doing that alone well...

I'm not really sure when it started but seemingly overnight, everyone is younger than me. They're achieving great things, living their dreams and there I remain, seemingly frozen in time.

When it comes to music I'm happy to be left behind. The young folk can have their rap and funk. They can beat box along to their synthesized tunes, I'm perfectly happy to enjoy some 80s classics. I joke about music tastes with some of my work mates as they snigger at my real music with real words. Music is my link to the past and a time where the world was seemingly at my feet and anything was possible..

Since high school I had dreams of finding the woman of my dreams, building a life and growing old together. To this point I remain alone. Hopeful but alone.

For too long now I have been putting off  some things in the hope that some poor soul would wander into my life. That was until this past weekend.

The first weekend of spring brought with it perfect weather. Having cunningly devised a rare weekend off, clear skies called me to get out and about. Tentatively, I got in to my car and headed for the hills.

It's time to do some things.

It's time to do the things I've been putting off. It's time to take that long car trip I dreamed of sharing with someone. It's time to book a holiday on my own terms. It's time to be me. Old, rusty and 80s child, me...

While the empty passenger seat still grates on me I'm making an effort to move on. The fairy tale may never eventuate. The perfect woman may remain locked away in my dreams.

Life is too short to wait around for perfect situations that may never occur. The sun is shining and I am alive. I'm winding the window down, cranking up some classic 80s and hitting the road.

Let's see how this story ends...

Sunday, September 9, 2012

A Belgian, Australian and a Hoosier walk into a bar..

Life has a funny way of throwing up curve balls at inopportune times. 

          Over the past couple of years like everyone, I have faced my fair share. This particular event occurred on my most recent US holiday in the summer of 2012. 

Track back a little over nine months and I stood on the verge of my first ever overseas holiday Having overcome  blindness, DKA and near death I arrived in Kansas City to be greeted by the kindest and most incredible folk I could ever hope to meet, many of whom had travelled vast distances.  It was a rare chance for mutual online friends to catch up in real life and to use an Australian colloquialism, “chew the fat”. 

One such person resides in Mid Western America and having returned home, I resolved to drop by on my next visit. Booking well in advance I arranged my single spare weekend to fly out to Indianapolis and touch base. When the day finally came, like all responsible travelers I arrived at the airport hours in advance. A foreign airport in a foreign country en route to a city I had never visited…. 

So far so good. It’s perfectly normal to fly vast distances to meet strangers after all, right? 

Arriving at the crowded departure gate I took up the only available seat and contemplated the journey ahead. As I waited I struck up a conversation with a Belgian business man also en route to Indianapolis to close out a deal.
With an initial delay to the flight we headed off to eat some early dinner both anxious to arrive at our planned destination. It was then that one of those curve balls came “flying” by. (Pardon the pun).
Returning to the gate we found our delayed flight further delayed and as storms rolled across New York, we looked on as more and more flights on the departure board were cancelled. As the early afternoon became mid to late evening and it became apparent our still scheduled flight was not going to leave we scrambled for an alternate flight out. 

Taking our illegitimate place in the “Sky Miles” premium customer queue, we struck up conversation with a native Hoosier (person from Indianapolis) who was keen to return home from a European business trip. After a long wait in line we were told that Sunday would be our earliest chance to get a new flight. 

With my return flight scheduled for Sunday I quickly saw my dreams fading in front of my eyes. 
Enter Belgian business guy…. 

With a friend waiting to pick him up in Indy he managed to secure a seat on a flight to Ohio and somehow convince the attendant to provide seats for both myself and the Indy local.  At this point I was just about open to anything, so at nearly midnight I boarded an unscheduled flight to a strange city in the company of another international visitor, not knowing what lay ahead.

A little over two hours later we arrived at Columbus International airport in Ohio to be greeted by the Belgians friend in his brand new VW.  

So there I was, road-tripping hundreds of miles across state lines in the company of complete strangers to Indianapolis.  

A little after 4AM local time I arrived at a gas station in deserted Indiana and bid farewell to my foreign friends and waited. Following a series of early morning calls my friend Mike began his journey across state to pick me up. 
So what is the moral of this long and drawn out tale…. 

That sometimes life’s curve balls provide opportunities to achieve things beyond our wildest dreams. In wandering down strange and unexplored passages, we can uncover friends and experiences that last a life time.

It was only one weekend. It was only one flight and it was only a chance happening but I shall forever remember that weekend and the hospitality shown to me by Mike and his wonderful wife

Friends for life are worth traveling for. They are worth hurting for and they are worth sacrificing for. They have helped me through some of my greatest challenges and shaped the person that I am today. Though distance, time and place separate many of us thank you to all of my friends for being the amazing people that you are...



Sunday, September 2, 2012

We interrupt our regular programming

In the vain of all sensational news flashes, this week I decided to interrupt all scheduled broadcasting and make a couple of out of character decisions.

I take change seriously and I despise stagnation. Daily life and routine seems only to breed more of the same in my life. Work, TV, sleep, work....on and on ad infinitum punctuated by the occassional life changing event in the company of inspirational folk.

It's easy to let life pass by and in the process miss opportunities for the sake of comfort and convenience. So often it is a case of "better the devil you know". Inertia is a powerful force and so often I can feel it strangling the life out of my bones.

While it is not possible to re-invent the wheel, this week I made some attempts at making mine more aero-dynamic. I long for more spontaneity, for more moments of insanity and acts of random stupidity. I want to be random in the true sense of the word.

So what's with the vaguaries?

Details at this pont are sketchy and it is not yet possible to guage whether my "decisions" will bear any fruit but the line has been drawn. From this point, normal is out the door. I will continue to sing loudly and out of tune to classic 80s tracks, I will get up and go to work in the morning, the sun will rise in the East but it will rise on a different me.

I will break the mould and I wll be unpredictable..