Live like THiS

Over the month’s of July and August I had a few work road trips. Knowing I had a few hours on the road coming up, I searched for a great lecture series to listen to. There are some fantastic things out there. I found “Confucius, Buddha, Jesus, and Muhammad” Taught By Professor Mark W. Muesse , Ph.D., Harvard University at http://www.thegreatcourses.com 

After 36 lectures on the lives, cultures and teachings of these four great sages, I spent some time trying to encapsulate the core aspects of spiritual life present in the lives and teachings of all four sages. 

“Live like THiS” is the title given to me by my son, Michael, after I taught him the four teachings. I used the tagline “Live THiS way” when teaching it to Mikey, and he said, “You mean, Live like THiS.” I realised, the second he said it, that he was the enlightened one! It is much more punchy and compelling phrased his way — and it’s the way we would say it in casual conversation. Each of these four topics would have been part of the casual every-day conversations of each sage. 

THiS is like breathing. At least it was to Confucius, Buddha, Jesus and Muhammad. Without these four things, spirituality was hollow and meaningless to them. With THiS in place, we have identity, purpose and those things greater than life begin to make sense.


I will just dump it on you for now. You chew on it. Let it meld in your mind and melt in your heart. And tell me what you think. In the next few days/weeks I will delve into each of the four teachings in more depth. So, here they are:

Live like THiS

          T ruth
          H umility
  little  i
          S ilence

All four great sages taught and practiced each of these on a daily basis. Here’s a bit more description.

           T ruth directed             seek, savour and live the Truth
           H umility in heart          listen, learn and embrace others
    little big world                   overcome selfishness - shaped by generous compassion
           S ilence busyness        find solitude, be still, focus attentively, Know

Think on these things. Post your thoughts and questions. I will be blogging on each of the four in the next week or so.

Blessings.

Why me?

I’m not much of a gambler. I like taking risks, but don’t usually think about the odds. Gambling is all about the odds.

So is medical diagnosis.

1 in 100,000 people are diagnosed with an Acoustic Neuroma. One out of one hundred thousand. That’s not as rare as some things, but certainly not as likely as, say, sunburn...

So, of course, the question comes to mind: Why me? And in contemplating possible answers to this question, another emerges: Did I just save 99,999 people from being diagnosed with an Acoustic Neuroma? How generous of me!

1 in 1000 people who have ringing in their ears are diagnosed with an Acoustic Neuroma as the cause. The other 999 just have tinnitus. Again, go me! 

But this “why me” thinking is really back to front. The more reasonable question is “why not me?” Let me explain.

At the moment I write this sentence there are 7,009,284,456 people on planet earth. There are more now. And now. Anyway, of that 7,009,284,456 there are 1 in every 100,000 that have a diagnosed Acoustic Neuroma. That means there are 70,093 people with an Acoustic Neuroma... right now. That’s a lot of people. Why not me? I’m in good company!

Life is all about perspective.

Bad First Date —VS— Good News Wait

Well, today was an emotional roller coaster! Jenny and I made our way into the city for our 9:30 appointment at St Vincent’s Hospital. We arrived early, filled in the paperwork, read for a bit on our Kindles and then got called in to see the neurosurgeon.

The neurosurgeon was very friendly and informative. He had a look at the MRI and asked a bunch of questions, did some testing of my hearing, facial numbness and vision. He was very relaxed and didn’t seem worried at all. I guess he sees more tumours than you or I could imagine — and this one was pleasantly benign. 

He told us that it was big enough to need to come out. Smaller ones can be controlled with radiation but ones this size and bigger are best removed. So, he sent us out to the bookings desk with a recommendation to go on the level 2 waiting list. Level 1 means emergency. Level 2 is “necessary but not urgent” and involves the surgery happening no later than 90 days from today.

So, the gentleman at the bookings desk told us, “We will call you when you have two weeks until your surgery.” 

I said, “You can’t tell me now when the surgery will be?”

“No,” he said, quite soothingly, “we don’t know yet.” 

Comforting, I thought. “Well, when will you know?”

“We fit the level 2 surgeries around the level 1 surgeries. So, when your name is nearing the top of the level 2 list, and there are two weeks until your surgery, we will call you. Thank you. Have a nice day.”

Ever had one of those first dates? “I’ll call you when I’m ready to see you again.” Ouch. 

Leaving the hospital I was livid. Well, as livid as Dave gets. I had difficulty stringing sentence together and chose instead to speak in short bursts of quip and quiet. 

Luckily, we had parked about a 10 minute walk from the hospital, the sun was out and the wind was brisk. It invigorated me. Jenny walked alongside me and explained to me how this was actually an encouraging sign. It wasn’t until an hour or so later that all she said started sinking in.

“If your tumour was dangerous,” Jenny said, “You would be a level 1 surgery. The fact that it is level 2 means the neurosurgeon is confident that nothing is going to change with your tumour for at least 3 months. It needs to come out, but it’s not an emergency. This is a good thing!” I’m fairly sure she said this, or renditions of this, more than 5 times. It sunk in, but through about 2 metres of slow-seep sandstone. 

When it finally got through, I was quite excited. “Hey,” I said, in an epiphany of brilliance, “This is kind of a good thing.”

“What do you mean?” Jenny asked.

“Well,” I paused to get this momentous thought into clear words, “I have a slow growing benign tumour that is likely to be much the same tomorrow as it was yesterday.”

Jenny nodded, patiently.

“And, if I am on the level 2 list,” I paused for effect, “that means the doctor thinks I’ll be fine until the surgery!”

“Yes, dear.” Jenny paused in case more brilliance was going to burst forth from her pontificating husband. nothing came, other than a happily wagging tail, lolling tongue and expression of anxious anticipation. “Good boy!”

“I’m ok now,” I said. “I really am. It all makes sense.”

“That’s good.” she smiled. “You know, I love you!”

“Yup,” I nodded. “I know!”

Family

It is amazing how times like this bring a family together. 

I’ve been off work since the tumour was found and my kids are making the most of it. Downball in the driveway with Dad. Shopping with Dad. Meals with Dad. Cyrus just came in and asked if we can go to a movie. 

Thursday morning, I called a family meeting. We all gathered together and I explained the tumour to them. I showed them the MRI scan and pointed out the tumour - not that you could miss it! And they asked questions and we pondered the situation together.

Mikey’s first comment, “Hey Dad, you’ll have new stories to tell!” I laughed and told him I was already thinking about that. There will be an entire string of stories. That’s when I decided to blog as often as I could about the situation as it develops. Then, when I want to look back and reflect on the journey, I’ll have it written up. And I’ll have the comments of many people to go along with each post. The stories are writing themselves!

Rachael has stepped up the daily hug quotient. She wraps herself around me and hugs tight and says, “I looooove you, Dad!” Today, when I dropped her off at school, she climbed across the centre console in the van and gave me a hug. It wasn’t an easy climb. And she’s never done that before. She also doesn’t like us talking about the surgery or the tumour. She just wants to love me. And that’s wonderful!

Cyrus checks my status often. Not my Facebook status. My live status. Being a homeschooler this year, he’s here all day like I am. He comes in every hour or so and asks, “How you going?” Then he talks about the tumour, or the hospital, or something we could do together. He remembers his time in hospital. He had brain trouble and an MRI too, and is probably the closest in the family to understanding how I feel. He’s been there. He calls me “tumour boy” like I’m the superhero of brain-world.

Thursday night, after a very busy and stressful day for her, Jenny cooked me one of my favourite meals - Sweet Potato Enchiladas and Green Chili Rice. She was thinking of me during her busy day and wanted me to know how much she loved me. And it was yummy! Wow, it was good. We have been out for coffee’s, walks, shopping and spent a lot of time together at home just talking. 

I wouldn’t wish a brain tumour on anyone, but if I could bottle this love and attention, I’d be a rich man! 

I love my family!

Themepark Holiday

This morning, while preparing breakfast for the family, my wife Jenny and I were talking about the many comments and well-wishes we have received over the past two days. Having been together, apart, at church, on Facebook, email, at the shops and elsewhere — we have encountered many people and many comments in different contexts.

I have received two very clear messages, loud and strong: I am loved and I am not alone. It is amazing how many other people have gone through tumors, major surgery or some other life-altering crisis. 

My comment in Do You Love what You Do? that “perhaps each of us are a mixture of healer and sufferer” is proving to be very true. So many people have gone through so much. And, after emerging on the other side of their personal crisis, they have become ministers of compassion to those in suffering. It’s a wonderful and terrible thing.

So, back to our conversation over breakfast prep. Jenny said, “It's amazing how many people seem to think you are having a holiday and enjoying doing what you want instead of what you have to do for work.” 

“Yeah, it’s a holiday,” I said. “A holiday with a theme. It’s a themepark holiday.” 

We shared a laugh and then Jenny said, “Just like a themepark: boredom with the occasional moment of terror.”

“And lots of standing in line,” I added. “You know the ride is coming, but you’re not quite sure you’re ready for it.” It’s at those moments that another bout of preemptive terror sets in.

I’m a very relaxed person by nature. Very little phases me. And so, it is with some unpreparedness that I approach this surgery. How do you get ready for something that is so foreign to your reality. I’ve never even had a minor surgery. Stitches, when I was a kid, that’s about it.

Last night, I woke from one of those dreams when your heart is racing and your brow is sweating and you study the darkness in the room until you realise, It was only a dream! Whew! 

Only last night, when I woke up racing and sweaty, the only a dream moment morphed into one of those Themepark Holiday moments of terror. It’s not a dream. It’s not even a nightmare. It’s real. I laid there for a moment convincing myself it was real and not a dream and wondering why I would want to convince myself of such a thing. Let it be a dream, my mind said. Go back to sleep.

But I couldn’t. So, I started counting my blessings. And that worked. I’ve got so many. Great kids. A wonderful wife. Loving parents. And a lot of support from so many compassionate people. If you are one of the many who have sent love our way these past few days, Thanks.

If you have yet to send an email, Facebook message, blog comment or text message... What are you waiting for? I’m here waiting patiently — on my Themepark Holiday. Any distraction will be most appreciated!

The Symptoms

I’ve had lots of people ask what made me think something might be wrong. What were the signs that I needed an MRI? 

I’ve done a fair bit of reflecting now that I know what an acoustic neuroma is and how it affects it’s host. And, I am quite surprised how many signs and wonders there have been in the past 15 years, escalating to the past month.

It was the facial numbness in the past couple months that got me worried. That lead to the return to the doctor with a desire to find the cause. But, let’s rewind to the beginning.

For many years I have had a very slight ringing in my left ear. I can remember in the late 90‘s, while studying at the dining room table, thinking the TV was on around the corner with the volume off. 

Can you remember the days before flatscreen TV’s? Do you remember the high pitch tone some of them emitted? As a kid I would hear that noise from across the house, go to the family room and turn off the TV.

But in our house at Avondale, where I was studying, I would often be confronted by a TV which was already off. Hmmm... That’s weird, I would think. I can still hear it. I would turn the TV on and off a couple times. Then return to my studies. Sometimes it would go away, sometimes it would keep ringing. Must be the loud music I listen to...

Then I started noticing it while trying to sleep at night. I would wake up and it would be humming quietly in my left ear. This is when I realised something. I could make it go away. If I concentrated on the sound — focussed on it with all my meditative ability — it would crackle on and off and then stay off. Other times it would just fade until it was so quiet I could barely hear it.

I got very used to managing the sound and often wouldn’t consciously hear it for days or weeks. Then, in a moment of silence, particularly after a very loud day — I would hear it again. 

In 2006 I got a desk job, in a private room with concrete walls and a door. It was quiet. And the ringing was loud. So loud that sometimes I would either wear headphones with music, which made the ringing worse after taking the headphones off, or go outside for a walk to hear some natural noise. 

After over a year of office work, I started having horrendous thunderclap headaches. They would come out of nowhere — attack the middle of my head — and then disappear. Sometimes they only lasted five minutes, other times up to 30 minutes. But, man they were painful. I tried cutting out caffeine, getting more exercise... nothing stopped them. So, in October 2007, I went to the doctor and told him about the headaches. He asked if there were any other unusual things going on in my head. So, I mentioned the ringing. He sent me out to get a CT Scan and discovered nothing unusual. Evidently CT Scan’s don’t see acoustic neuromas. So, he told me I was fine and that the headaches should stop on their own. Which, thankfully, they did. 

But the ringing persisted. The doctor said the ringing was tinnitus and that I could do some retraining to learn to block out the noise. I told him I used to be able to do that, by concentrating on the sound. But now, it was so loud and ever-present, there was no blocking it. I was so used to ringing in my ear, I decided to continue consciously ignoring it. That works most of the time. It’s there, but so what. It’s only at night or when alone in the car or nature when I am driven to distraction by it.

Since 2007 the ringing has been consistently getting louder. It actually surprises me when I listen to it. If I use the old elimination strategy of saying, ok, just listen to the sound - become one with it - find it’s centre... IT IS LOUD! 

Then the facial stuff started. I think it was earlier this year but I’m not really sure. Occasionally I would notice a tear trickling down my left cheek. No reason. I wasn’t sad. Just a tear out for a joyride down my cheek. I have also notice, some mornings when I wake up, the left eyelid takes real effort to open. Often I just leave it closed and let it wake up slowly.

Some months later, I noticed when I was drinking that some liquid would dribble out of the left corner of my mouth. Not much. Just enough to need to wipe so it didn’t drip off. The first few times, I didn’t think anything of it - I must have been talking while drinking or just didn’t close my mouth properly, who knows. It wouldn’t happen again as long as I thought about it while drinking. But it started happening more frequently. 

One time, when I wiped the drip away, I realised my lip where the drip came out was numb. I rubbed it. Yup. Numb. Weird. The next time a tear tracked down my left cheek I felt the corner of my eye. Numb. But they didn’t stay numb. It was random numbness.

About a month ago, I decided to go back to the doctor — a new doctor. The doctor listened to my symptoms, sent me out for a blood test and a CT Scan. In that first visit, he suggested it was probably stress. I had thought stress was the cause and was hoping he would say so. Amazingly, after leaving his office with the “stress” suggestion, the numbness stopped. Well, nearly. But it was so different than before the visit that I convinced myself it was psychosomatic — I was creating the symptoms myself to deal with stress. This made a lot of sense to me because I don’t seem to notice or process stress in any conscious way. It just rolls off like water off a duck’s back. So this is what stress does to me, I thought. The blood results came back healthy. It’s just stress, I thought. No reason for a CT Scan. 

I mentioned the stress stuff to my dad in an email and he wrote back asking for a complete list of symptoms. My dad is a very curious and intrepid explorer of all things. So, thinking nothing of it, I emailed him all the symptoms — even making fun of myself for creating them to deal with stress. 

He called and told me to get an MRI as quickly as possible. My stepmom Janet was a theatre nurse for many years and has assisted in thousands of brain tumor cases. She read my symptoms and told my Dad I had all the symptoms of someone with a brain tumor. Get an MRI!

So, I did. Last Wednesday. 
And I’m so glad I did! 
Thanks Dad.

Now I know that everything — the numbness, the leaking eye and lip, the ringing and perhaps even the headaches — were all from this one little growth that has been slowly increasing in size. 

How long has it been in there? Who knows. 
How long will it remain in there? Not much longer!
I am so excited that the ringing is going to stop. Oh, happy day.

It is possible, when they remove the tumor, that I may loose the hearing in my left ear. I may also experience trouble with my balance if that nerve is affected as well. Usually acoustic neuromas are between or wrapped around the auditory or balance nerve. Sometimes, when they grow, they affect other nerves and the brainstem.

Luckily the facial nerve is not damaged yet. I still have full symmetrical use of my face. But, should the facial nerve be damaged by the tumor removal, I may have some facial paralysis. But, that is very unlikely. 


Another thing that is very interesting was discovered during the tests run by the neurologist at the hospital last Wednesday night. He held out a finger in front of me and said, "How many fingers do you see?" 

I said, "Two." 

He said, "You see two fingers?" 

I replied that if he had asked, "How many fingers am I holding up?" I would say one - because obviously you are only extending one finger. But I see it with a second one right next to it. He then tested my vision with a red ball on a stick. 

I have double vision. I had not noticed this previous to the test. I have noticed that reading takes more concentration. But, I hadn't noticed that there are two of everything. My mind just combines them. 

Ever since that night, I have been having fun testing my eyes. It is obviously a nerve being affected by the tumour, not my eyes causing the double vision. My brain is receiving a bogus message. How can I be sure of this? Well, if it was a visual double image, covering one eye should remove one of the two images. It doesn't. When I cover one eye, I still see two images next to each other. Even weirder - it's not only on the left side. Covering either eye produces the same double image. And looking with both eyes open does not create four images - just two. So.... interesting, eh?

On Tuesday, I have an appointment with the surgeon at Saint Vincent’s Hospital in Melbourne. Then I will know more!

The 23mm Intruder


So, here's the tumor that lives in my head. It is on my auditory nerve and although it has been growing for most of this millennium (if not longer) it was only discovered a couple of days ago.

I'm so glad it has been discovered.

Undiscovered, an acoustic neuroma (resting on the brainstem, as you can see mine is) can be fatal.

Once it comes out, my quality and length of life will increase. Nice!



Merry-Go Monkey Round Go Drum Bang

Have you heard the one about the monkey banging a drum on a merry-go-round? 

I have.

It’s in my mind. The little monkey, holding his drum which has “tumor” written on it in big red letters, goes round and round - banging. 

As the merry-go-round spins the monkey get’s farther away. He’s still beating his drum, but it’s at a distance. Then, bang, bang, bang - here he comes! 

It is fascinating how the mind works. I have talked to lots of people over the past day and the topic of every conversation has been “tumor.” And the merry-go-round keeps spinning.

Even when I’m reading, watching tv, chatting with family, whatever - the monkey and his drum are ever present - sometimes quiet, sometimes loud.

Is this how worriers feel all the time? They call it stress!

Oh for the peaceful mind of Dave.

Hello little monkey!

Do you love what you do?

Just a tick before the clock tocked from Wednesday to Thursday, I was talking to a man who loves what he does. He’s a neurologist at Box Hill Hospital.

He was testing me. 

“How many fingers do you see? What about this stick with a ball on the end, how many balls can you see? What if I move it way over here? How many now?”

Then he got out a tuning fork. “Can you hear this? What about when I touch it behind your ear, can you hear it now? What about now?” He pressed the tuning fork to the centre of my forehead. 

“Yeah, it’s louder on the right,” I said. 

“Can you feel this?”  Poke. “Yes!” 

“What about here?”  Poke. “No.” 

“Hmmm...”

After a half-hour of tests it was a new day. Well, Thursday. And it was confirmed. The tumor was effecting my hearing, facial feeling and possibly my vision - all on the left side. He had a tool to test everything all neatly arrayed in a briefcase.

“It’s like your bag of tricks,” I joked. “You’ve got a toy for every test.”

He agreed and then I asked something I had been wondering as I watched him work.
I said, “I know you want the best for the patients and wish they weren’t sick.” He nodded. “Putting that to one side, do you get excited when something unusual like this comes along? Is it fun to explore a patient’s abilities when their brain is working differently?”

An uncomfortable grimace played across his face and slowly morphed into a smile. “The brain is a magic machine.” He said. “Yes, I do enjoy it. It’s fascinating.” 

This world is filled with lots of broken people. Or at least with people with lots of broken bits. Isn’t it nice that there are gifted people — healers — who are wired to be enthralled by our broken bits and compelled to put them back together again? 

I’m glad that neurologist loved brains. I’m glad he was there at midnight to explore mine. Thanks Doc. I’m glad you love what you do!

That experience got me wondering; perhaps each of us are a mixture of healer and sufferer. At times we need help. At other times we provide help. In what special way are you wired to help others heal? You’ll know it when you love it. 

Acoustic Neuroma


8:45 yesterday morning I made a quick phone call, just like the doctor told me to.
“I need to book myself in for an MRI,” I said.
“We can do 12:15 this morning.” 
REALLY? That soon? I thought. I hope it’s nothing, but ... That soon?

1pm I found myself being inserted into the worlds largest pencil sharpener. I never realized how noisy it is inside a pencil sharpener!
The radiologists did a couple of 2 minute tests, a few 4 minute tests and then let me know they needed to do the tests with the contrast. So, I got an injection and a few more scans. They said I did a very good job laying still. It’s one of my strengths — I practice every night.

2pm on the way out of the clinic the receptionist asked, “Did you want to wait for those or come back later?” 
WAIT? My mind raced. They’ll be ready so soon?
I said I’d come back at 4:45 on my way home.

3pm I was sitting at my desk when my mobile buzzed. 
“David, can you come see me?” 
It was the doctor who, the previous afternoon, told me to book an MRI.
I drove to his office, stopping to retrieve the MRI scans — ready so soon.

4:15 my doctor invited me to take a seat. He showed me the report he'd received by fax. A growth, on my auditory nerve. “If I recommend you to a neurologist, you will go on a list and need to wait. Maybe a month. So, I will write you a letter to take to emergency at Box Hill Hospital. They have a neurology department. With my letter and your scans, they will see you tonight.”
“Do I need to go so soon?” I asked.
“It’s the best way. It’s the fastest.” 
Fastest was certainly the word for the day.

6:15 I put 4 dollars into a parking machine in front of the emergency department. That gave me two hours. I went inside, gave them my letter and sat down. There were a lot of people in the waiting room.

8:15 I put 2 dollars into the parking machine. That took me past 9pm which was the time the meter stops counting. 

10:45 a nurse took my blood pressure, temperature, and asked a few questions.

11:30 a doctor called my name and I followed him through a warren of rooms, hallways, beds and curtains. “Your MRI shows a 23mm tumor on your left auditory nerve. How has it been affecting you?” 
I told him about the ringing in my ears that, for five years, I had thought was tinnitus. Then I told him about the facial numbness I’d been experiencing in the past few weeks.
We did lots of interesting tests. And then he said, “This tumour needs to come out of your head soon.”
Yeah, I get it. Soon!
“I’ll just go make some calls.”
I sat on the bed, googling Acoustic Neuroma. Interesting...
“Next Tuesday morning,” he said as he walked into the room, “9am you need to be at St Vincent’s Hospital in the city. The surgeon wants to see you.”
So soon. Wow.

1am I crawled into bed next to the love of my life. She rolled over and groggily said, “You’re finally home! You must be so tired.”
“Sure am,” I answered.
“Me too,” she said. “Let’s talk about it in the morning, ok?”
This woman knows me, I thought. The morning will come all too soon.

Dave Edgren ~ Story: Teller, Author, Trainer ~

BOOK DAVE NOW! Dave Edgren is passionate about creating a values-based storytelling culture. In his engaging and often hilarious way,...