Dying, Surviving, Inspiring – Part 1 – Dying

I often get comments from Inspiring Women ladies that I don’t talk very much about myself or my past.

And yes, they are right. Some things are difficult to put into words or take too long to go into.

I’ve realised that a very significant anniversary is about to occur for me so for those of you know this story, apologies if you are hearing it again. If it is your first time, you know a little more about me.

suelivinggas2002

10 years ago in February 2004, I was led into a room in my hospital gown.
I said goodbye to my family and loved ones and was wheeled into the operating room.
I had done what was asked of me by the many medical experts I had on my team up till then.

I had sold my business, stood down as Director off all the boards I was on, resigned as President from the Warringah Chamber of Commerce, sold my house, bought a unit (and tried to renovate it for my return), made my will and prepaid for my surgery. (This may sound a little strange but as I didn’t have health insurance, I was asked to prepay the costs .Reason was if I died, it would take too long to wait for probate for the hospital to recoup their costs).

Being a pragmatic girl, I totally understood the request.

Why I didn’t have health insurance? Long story short – I had been paying my dues into health insurance since my late teens *(another story) and wanted/needed some corrective eye surgery in my 20’s. Nope not covered! So when I paid for that surgery out of my own pocket it made me wonder what the hell I was paying health insurance for.  Surely if something was life threatening I would go to the top of the queue for surgery under our public health system? Yes I was assured by older, wiser adults (I WAS in my early 20’s & still naive)

I found out there was only one person in Australia who could do the surgery I needed.
Only one man had any experience in doing the special procedure called a STA-MCA bypass.

“How many times have you done this” I asked the Professor. “Not many, a handful” he admitted. “So how do you practice the surgery?” I wondered “On animals” he said.

God, THIS was the only person who could do the surgery? I had already been told by my Neurologist that this man was so good The Mayo Clinic wanted to move him to the US and run The Mayo Clinic for them; thank god he had turned them down! He had trained there.
I said I wanted to go in the public health system as I don’t have private health insurance.

“I don’t know how to say this” he said tentatively “but you won’t live that long”. WHAAT???? I knew I wasn’t feeling crash hot but surely this isn’t how you are supposed feel when you are dying?

“But I go to the top of the queue, don’t I?” I asked.

And who do I let die to let you in, how would you make that decision?”

That was not the answer I was expecting!

“You don’t realise how bad you are” he said.

My thoughts were “When you see people dying in the movies or on TV they look like they are in pain, they can’t function anymore. I was still driving; still working, though I had stopped my personal trainer because I found it was causing some issues. Sure I was tired as hell, limping quite a bit and getting slower but surely this wasn’t what dying felt like?”

Being a practical girl I negotiated my operation costs and hospital stay and got a special price for “cash”. We had a deal.

  • If the operation went well, I was to get the hell out of the hospital as soon as possible.*(another story, I got quoted the wrong price)
  • If it didn’t go well, the hospital would look after me until they could find me a nursing home to move into.
  • If I died, at least my bill was paid and they wouldn’t have to wait for probate but they thought I’d have a pretty good chance of surviving in some state, just couldn’t promise in what state I would be in.

This was why I was renovating my newly bought unit in Dee Why, in anticipation that I wouldn’t be able to walk well, go far or do too much at all. I worked out I couldn’t lift my hands above my head or move certain ways anymore. I moved carefully and walked slowly to avoid causing more “events”(as they were now called by doctors)

Up till now I had never stayed in a hospital, I’d never really been very sick!

What had gotten me on that operating table had taken a long time for doctors to diagnose. I had started having mini strokes. Many of them in fact. Mini Strokes happen in a couple of seconds which is why it can be difficult  to know what is happening. I remember being accused of being drunk once at a business event I attended, I hadn’t even had a drink! I just didn’t realise at the time what was happening. Eventually the ministrokes progressed into some rather large strokes that started to affect me for longer periods of time and brought on by stress and humidity, though I did work out a way to deal with the humidity.*(another story)
What was the final diagnosis after all the usual heavy medications to prevent reoccurring strokes did not work?

Moyamoya Syndrome

Nope, I hadn’t heard of it either! Apparently it is some rare disease that people die from which I suspect is because it is so rare to diagnose. Looking the disease up now I can see there is more information about it online now then there was 10 years ago. I can honestly say “God Bless” a guy called DJ in the US who had a very basic website for moyamoya sufferers, he had filmed his surgeries and created a place to read and support each other. His website is still there and since he was 2 years ahead of me in diagnosis I read everything like a madwoman! His website is http://www.moyamoya.com/

I had enough trouble convincing myself that I had had mini strokes because mini strokes don’t really hurt but they do feel strange. They were happening so frequently I started to work out a pattern of how they were occurring and tried to run my business & my life around it, whilst the medicos were trying to work out what the hell was going on. The fact I was still functioning greatly confused them.

Lying in a Stroke Ward in 2003 after the first diagnosis of having ministrokes in a room with a whole heap of old people around me had me convinced I was in the wrong place!
I raided the little library in the hospital trying to read all I could strokes happened only to old people surely?

No – they do happen to younger people too, they are called “brain attacks”, exactly like heart attacks.

By the time I was being wheeled in for my operation in 2004, I wasn’t in a good state anymore.

My face was grey, I had a pronounced limp, my thoughts took longer to form, I had been trying to get proper use of my left hand (I’m left handed) so I practised my signature a lot to stop the spasticity (you see those old people with their hand curled into a claw like state? That’s is caused by spasticity, usually from a stroke) The medications, the blood flow (or lack thereof) were taking it’s toll.

I now could no longer get very happy, sad, excited, and angry or any other strong emotion without having a ministroke, it affected the blood flow in my head too much.

I had to learn the art of Zen,  show no emotion….Which was VERY difficult for me to do.

I HAD been a very animated person, who laughed loud, loved deeply and was known to throw a plate or 2 in a temper!
My European blood had to be tamed or it would be the death of me.

Let me tell you, that when you are lying there on that surgical bed you are hoping and praying that the surgeon is having a good day. You hope he woke up that morning feeling great and positive and ready for anything!
I knew my surgeon loved playing a certain type of loud music when he operated, I hoped he brought his player with him!

Your job as a patient is to lie there get well and heal – his job is to have steady hands and use all that knowledge and training to the best of his ability.

When I woke up afterwards he was sitting right in front of me and shaking his head…I felt myself go cold in fright.

“I’m sorry Sue, it didn’t go according to plan A….. or Plan B…so I had to try Plan C. How do you feel?

Stay tuned for part 2 – Surviving….

 

11 Responses to Dying, Surviving, Inspiring – Part 1 – Dying

  1. Whew…Im on the edge of my seat wanting to read more! Whatever the next installment reveals I am so glad you made it. (I knew there was something special about you btw!)Thanks for sharing your story. Sharalyn

    • Thank you Sharalyn, Now when someone says “you don’t talk about yourself” I can point them to this series of blog posts. I’ve have to give this article such broad brush strokes of what happened 10+ years ago otherwise it would be a novel. 3 blogs should cover the “basics!” Anyway, you know it must have a happy ending, cause I’m still here xxxx

    • So many stories Shan, sadly some people would get hurt if I said too much. A passionate but toxic relationship also had to go, 8 years with step kids gone.Staff at my business had been told I had turned into a vegetable when I went in for the strokes, my poor staff.

  2. Now I understand why you seemed to and do live life at such a breakneck speed that it makes my head spin! I am so happy you survived to tell the story and wish you many more years of happiness and joy. xx

    • You hit the nail on the head, I suspect my view of “life” can be quite different to other peoples. Losing everything except my life taught me what was important. xxxx

  3. I always knew you had a great story and am so glad you are now telling it. You really are an inspiration! Can’t wait for the next installment. xxx

  4. Big hug of energy for being so out there and intuitive … standing by for the next piece in the puzzle 🙂