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Getting the diagnosis for Chronic Fatigue

In an earlier post “How I manifested Chronic fatigue”  I explained how I got ill.

Too much perfection, too much “try hard to fit in”. A confusion between my hearts desires and the madness of my university educated mind. This all resulted in a death wish of extreme travel.

Thirty years ago Chronic Fatigue was not a diagnosis, if you had it you were considered to be mentally unstable and the treatment for that was Valium.

I don’t do medication and work, my clients deserve a sober opinion from me so that was simply not an option.

I wanted a cure — not the chronic hopelessness of medication.

I went from Doctor to Doctor and I was offered the same thing —  time and time again — Valium.

I had a feeling of hopelessness and I felt misunderstood and abused by the lack of care I was shown by the medical profession.

I was referred to a Gynecologist for the abdominal pain and at that consultation he eluded to the fact he felt that I had many sexual partners when I was travelling in Europe so possibly had pelvic inflammatory diease.

I was confused from the Chronic Fatigue and couldn’t believe that someone would have thought that of me when I had been celibate in Europe — the travel had been so extreme I was not in a frame of mind for sex.

I now know he was a very unkind man but I was young then and believed that others wanted the best for me.

When I woke up from the examination the nurse caring for me told me that the Gynecologist was examining too many women unnecessarily in this way and she though that it was abusive and that the examination showed me to be healthy.

I was on my way to giving up my medical/scientific indoctrination that I had been brainwashed with at university.

I was on my way to trusting myself and allowing myself to have my own opinions.

The fourteenth Doctor referred me to Professor Goodwin at Royal Perth Hospital. After a couple of consultations he diagnosed that I had Chronic Fatigue — now called Fibromyalgia.

My symptoms were extreme fatigue, exquisitely painful lumps in my muscles that moved day by day. Bruising where a lump had been, abdominal pain and although I was constantly tired and slept all night I would wake up exhausted. I also felt fuzzy in the brain at times.

Professor Goodwin’s advice was to cut our all chemicals in my life. In my food, personal care products, cleaning products, everywhere in my life.

Chemicals – Gone!

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He suggested that I only eat the inside leaves of lettuce. He explained that the outside leaves would have pesticides on them. I was to eat white rice as the pesticides of the husks would be removed.  I was to eat only red meat, as white meats had many chemicals and hormones in the production and fish had mercury.

At that time in Australia red meat came off a pristine grass fed paddock, there were no feed lots.

I also learnt to clean my home using water, bicarbonate of soda and vinegar. I stopped using washing power in my wash as the “chemical perfume” immediately increased my symptoms.

Once I removed the chemicals from my environment and diet I learnt that I was super sensitive to any chemicals particularly smells.

The Chemical Overload of a typical day

I will explain how many chemicals you are exposed to in a “normal” Western day.

When you are in bed the mattress is off gassing the anti-bacterial and anti-fungal chemicals it has been treated with, plus the chemical smell of your washing soap powder is being breathed in as you put your head on the freshly washed pillow case.

Your pyjamas are also filled with this artificial perfume and you absorb it though your skin.

If you wear night face cream then you have all the perfumes and other chemicals are being absorbed by your skin.

When you get up and go to the the toilet the toilet cleaner and bleach that has been used to clean it is present so you absorb it though your lungs or skin. Some toilet paper has a toxic chemical “perfume” (phalenes) smell as you wipe it on your delicate absorbing membranes…

You get under a hot shower, and the Chlorine (which is a poison) is released with the heat of the water —  you breathe it in — you brush your teeth with sodium laurel sulphate, propylene glycol and other very toxic chemicals. The shampoo, conditioner and soap each have different and strong chemicals in them, as you use each one. On and on it goes, the chemicals in your towel, make up, hairspray, hand cream etc. and we have not even eaten yet… You are only just out of bed.

This goes on all day and your body is constantly assaulted by these chemicals. Eventually your body becoming overwhelmed as it can’t eliminate all of those chemicals quickly enough and they build up.

Organic – pesticide free food

Of course now you could eat a wide variety of whole organic food. I now notice that Professor Goodwin’s food was gluten free and that means that it was a diet that didn’t increase inflammation. Maybe this could have been part of the magic of his “diet”. Gluten is inflammatory.

Immediately, I was much better but not 100% — sort of 60% better. I was still tired, still in pain, still debilitated — just not so much. I was not state windsurfing champion level of wellness by any means.

I decided to keep working because I was in pain if I worked and in pain if I didn’t work and at least work distracted me.

As a Physiotherapist part of a normal examination is to ask the clients all about their pain, the area, the quality and the intensity.

Most of my clients had less pain than I had. A part of me would be amazed at this, however, I knew that lying all day in bed would just make the pain worse because I would focus on it, so I kept working.

After work I would come home eat some lettuce leaves and if I had the energy; a steak and then go to bed at 5.30 pm. I’ve never been much of a rice eater.

I would stay in bed until morning then awaken exhausted. I would get up have a steak some rice and lettuce – go to work only to repeat this pattern for the five week days.

On week ends I would spend most of the day in bed and just get up to eat and do the basics of house care. I lived alone at the time and I believe this helped as I didn’t have to also engage with others who would probably be using and eating chemicals simply because they were unaware of how sensitive my system was.

I’m now in my late 50’s and I am healthier than most people in their mid twenties. I believe my low chemical exposure and the fact I eat mainly whole organic foods has something to do with that.

The Smiling Psychiatrist

Professor Goodwin was researching this new disease and he asked me if I would attend an appointment with a Psychiatrist for a personality test. He was researching if certain personality types were more likely to have Chronic Fatigue.

I was told I would go and fill in a personality form and that it would only take a short time.

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I liked Professor Goodwin so said I would go. By this time I was suspicious of medical people, so tentatively, I entered the Psychiatrists rooms.

The Psychiatrist ushered me into a chair and sat across from me with a wide desk between us. He had false teeth and a huge fake smile.

He then started to ask me questions.

“How are you sleeping?”

I would say “I actually get to sleep easily put I get woken by the pain at times, and then I roll over and go back to sleep”

He would speak out loud when writing his note and say “Very interrupted sleep pattern and difficulty with sleep.”

“What is your social life like? Has it changed?”

I would say, “I still see my friends and like seeing them but sometimes the pain is too great so I see them less now.”

He would say;

“Becoming socially isolated.”

…and so it went on. That slight change of phrase giving everything that I said an entirely new meaning.

To make myself feel better about this incredibly stupid scenario I imagined myself jumping onto his desk and screaming at him that he was too crazy to be out of the asylum!

I sat there dutifully answering the questions whilst imagining him being locked away for life. It may have even bought a smile to my face?

At the end of this long interview he gave me an even more fake smile and he announced my diagnosis.

He told me that I was a “smiling depressive” and what I needed was valium. With this announcement he pulled out his prescription pad and went to write on it.

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A toxic baby blue drug with a heart in the centre.

I told him that I was working and I don’t do work and drugs so I would not be taking any medication.

He looked surprised and dismissively still wrote the prescription. I repeated that I had no intention of taking Valium. He then angrily handed me the prescription. When I wouldn’t take it he looked resigned—all with that huge fake smile.

Slowly he got up, gave me the personality test to fill in and left the room. I did the test and returned to Professor Goodwin for the result.

The Perfectionist

Professor Goodwin said that I had a perfectionist personality type and that I would be wise to give this up so that I could get better.

I am guessing that you don’t run a business or become a state champion at something without being somewhat a perfectionist and driver. I was not told to go to counselling so I decided to just cut myself some slack and go with the flow more and this is what I did.

This helped and I was better again but NOT COMPLETELY BETTER. I was still in pain, still tired, still not feeling that zip in the morning — that joy for life and the ability to just use my body with ease.

To sum up the first stages for healing Chronic Fatigue that I used were:

  1. I cut the chemicals out of my life — a great book about this is “Slow Death by Rubber Duck” by Rick Smith
  2. I ate gluten free food that was pesticide free. Now you can choose organic whole foods.
  3. I read books and learnt about the perfectionist personality and allowed myself to let go of controlling life.

In the next blog I will explain about adding a spiritual/larger dimension to my life and how that was the last key to healing.

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How I Manifested Chronic Fatigue

We all want the key to a life of health, wealth and happiness.

I don’t have that key, however, I have story about my way of creating that in my life.

This was a powerful journey of the soul and it requires a gentle telling.

This first post is about who I was before I got chronic fatigue and how I created it.

Ongoing posts will be about how my journey unfolded as I went back to robust health.

It was a rocky journey and it will take a few blogs to explain it all.

Let’s start at how I created my ill health.

How to create a chronic illness.

In the 1981 I was the Western Australian Windsurfing state champion for the second year in a row plus I owned a very successful Physiotherapy business. Additionally, I had a marriage with a man whom I adored and all was well in my world—or so I thought.

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Windsurfing and loving life

On my twenty fifth birthday I was struck down by the pointless of my existence.

Is a perfect life the end of an era?

Everything was so “perfect” and I felt that I was wasting my life. I now know that I was having a spiritual crisis.

At this stage of my life I had the physical enablement of a four year university degree, plus the spiritual disablement of a four year university degree.

I now know that universities and the media are not the way to find your vocation or the meaning for anything at all.

I now frequently remind myself that:

Life has no meaning—it only has the meaning you choose to give it.

Don’t get me wrong, I am over the top grateful for my university education, it taught my brain to behave and be logical.

I just took it too far and let the logic take over my feelings — that was my huge mistake.

I have always been my own person, I didn’t care to fit in too much, I have mainly gone my own way — yet after university I tried to “fit in”.

I “tried”to do things the way things were done here on Planet Earth—at least the way I had been brainwashed at university.

I now tell people;

 “It took me years to overcome my university education”

…and I am not joking!

My wonderful partner didn’t know what to do with me, I was unreasonably questioning everything. Absolutely everything.

Our relationship, the way I worked, connection with friends — everything.

It was exhausting for me and confusing for him.

His way of dealing with my crisis was to became bossy. He simply didn’t understand what was happening to me and in his fear he tried to force me to “do what was rational and right”.

I didn’t understand either — we were both confused.

After a short time I left him. I truly loved him with all my heart yet I left him because the power of the awakening was too strong to fight.

Leaving with love and kindness

It broke my heart to leave this kind and wonderful man, yet, I didn’t have a choice — my soul was calling me.

I love this man to this day, he was an important person in my life.

I went travelling — just to take time out — to simply be me without any influences.

I had always been a traveller and this had always been my way of getting perspective. When I am alone I easily tune in to my souls messages.

Initially my travel was for a month or two. I kept calling home and asking if the people running my business would keep working for me so eventually it expanded out to six months in Europe and Turkey.

My death wish

In retrospect I believe that I had a death wish.

I created so many intense experiences travelling alone as a single woman — in a world where men seem to have the power.

In Turkey I had many life threatening experiences — plus many life affirming experiences.

If you wish to know more about this here are the links.

The night of the gun

The cat and mouse game—me the mouse

Locked in my hotel room by the manager

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I didn’t sleep in the tent,  I spent the night in fear with a gun at my head

Each day was out there and each night an even more fraught adventure. Keeping myself safe was a daily task.

I left Turkey loving the people, the beautiful country, however, these intense experiences left an imprint on my body.

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Me on the edge of the Euphrates river – We spent the night here. No food and lots of unfiltered water. It was bliss.

Days of living on the edge using cortisol and adrenaline is a sure way to get a chronic illness.

Returning to integrate all that had happened in my travels.

I really didn’t want to come home after the six months but my staff were begging me so I returned.

I was still confused and didn’t see the point of my life.

After a few weeks at home I was overcome with severe pain, large lumps in my muscles and extreme fatigue.

It was debilitating and I went from Doctor to Doctor to try and work out what it was.

Over twelve months I consulted fourteen different doctors.

They were all wanting to put me on medication without a diagnosis!!!

That is not science — I knew that was bullshit!

I felt ashamed to be part of the Western Medical system.

In my work I was (and still am) a human and a scientist and I treated my clients with that respect.

I expected nothing less for me, so I was having none of that.

Eventually, I was sent to Professor Goodwin at Royal Perth Hospital and was diagnosed with the new and incurable disease of Chronic Fatigue.

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The House of Books

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Weird things and surprises constantly occur in my life — I have often found that I know less about others than I realise and other people seem to know about me than I realise.

How does this happen? Is it because I simply jump in and talk to anyone? I have no idea.

This is a story about the synchronicity of flying to distant places with an odd story about the “THE HOUSE OF BOOKS”.

Once I was waiting in the departure lounge of the Bangkok airport for a flight to London. I noticed a man I recognised from the streets of Fremantle also waiting for the same flight.

I would often see this man his wife and children walking together around Fremantle. When ever I saw them I imagined that he was a kind supportive partner and father.

The plane was a jumbo with hundreds of seats and as life would have it — he ended up being allocated a seat next to me.

The flight was 12 hours so during that time I was able to get to know this man fairly well — particularly as he seemed extremely happy to talk about himself.

I learned that my imagination was wrong and that this man was unkind and abusive. He said things about his wife that made my thick straight hair curl.

He told me that he was leaving his wife and I could only think how lucky she and the children were to get away from him. What a lesson about my imagination!

On another flight which was to Indonesia from somewhere I was seated in the middle row of five seats.

In the first four seats were my daughter, then me, an Asian man and a blond Australian surfie who was in his 30’s. I have no idea who sat in the fifth seat.

The Asian man sat there with his coke bottle glasses, his quiet demeanour, his beautiful jet black hair that was completely in place. He was quiet and tried to keep a low profile.

The Australian Surfie had wild blond hair bleached by the sun and rarely done! It was quintessentially “surf hair”. He was happily drinking beer. He would call the air hostess as soon as one can was finished to get another one. Can after can went down the hatch.

As he drank he became happier, louder and friendlier so eventually he started trying to talk to the Asian guy.

The Asian guy was extremely shy and he kept looking away from the surfie. In doing that; he would turn towards me and then feel even more awkward. Finally he tried to not look either way and simply tried to make himself shrink back into his seat. Surrounded by Australians seemed simply too uncomfortable.

The surfie guy was oblivious to his affect on the Asian guy so he kept drinking and getting more or more “friendly.”

Finally I decided to join in—who can resist such an awkward situation?

I started quietly by asking Surfie about himself. He told me that he was a professional surfing promoter and was going surfing with his clients in the back blocks of Indonesia.

He garrulously talked about the terrible lives and conditions in the villages in that part of Indonesia.

He spoke of the health problems and about an Australian Surf Charity that he belonged to that was helping these people. Immunisations, medicines and all sorts of practical help was flowing from that charity to the people who owned the beautiful surf beaches. Rahdah, rahdah … on and on he went.

The Asian guy stopped shrinking back and started to look relieved and then finally became interested. With my chatting and the Asian guy joining in the Surfie relaxed and he proved to be a kind and good-hearted bloke who was simply a loud, chatty, friendly drunk.

Finally the Surfie started talking to me and the conversation went like this —

Surfie: “Where do you live?”

Me: “In Fremantle”

Surfie: “Where in Fremantle?”

Me: “Solomon Street.”

Surfie: “Oh, I know you. You live in the house that is raised up from the road with a view. You have a the limestone wall at the front and you go up the stairs to the front door.”

Me: “Ahhhh….”

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Surfie (oblivious to my response)

“I call your house — the house of books— Your house has books stacked everywhere… You had so many books about all subjects it was the most interesting house ever. You have so many books — yes the house of books.
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I was feeling rather strange at this stage, as he was thoroughly correct about all of this.

Me: How do you know my house?

Surfie: “I went out with Libby who lived across the road from you. She was a really great person and I still think the world of her.”

Well, Libby she was the daughter of the people who lived across the road from me and she was also a surfer.

Surfie: “When you went away once you had her looking after your house and dogs so we stayed there together.

 Yes, the house of books— I loved staying there….”

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Horses, dogs and children… Sage Advice from an Australian Jackaroo

Silhouette of a CowboyMy school in Wubin had a program that linked you with a “pen friend”. This was sort of like an old fashioned “facebook friend”. My pen friend was called Michael Boladaris and he lived on Wonganoo station that was miles out of Wiluna in the Western Desert.

We sent letters to each other for many years all the way through primary and high school. At the Wiluna gymkhana we would meet and hang out together.

Going outback to the gymkhana was a long adventure of driving down roads into the desert often not seeing another car for up to half a day.

We would drive by soft yellow sand plain with a mad profusion of crazy coloured wildflowers, and then into the red dirt that got up your nose in your ears and every crevice of everything.

 

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Beautiful red dirt with a pristine blue sky.

We would stop along the way in deserted gold mining towns and we children would fossick for junk.

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Desert finds. In the past there were many gold mining towns near the roads. These are now just concrete. broken glass and bits of metal with the odd find.

Finally we would be in Wiluna and camp in the bush as there were no caravan parks.

No showers or toilets for camping in those days, we would just camp somewhere flat use the showers provided at the gymkhana and when we felt the need we grabbed a shovel and squatted behind a bush.

Families  would cook on an open fire and after dinner we would sit around  and gaze into the fire or someone would grab a guitar and sing.

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Fire gazing — the original TV

We would all be so exhausted from the gymkhana that as soon as it was really dark we would sleep in our swags under a pitch black sky with a myriad of diamond like stars.

I would watch for satellites — they were really infrequent then, and then I would go to sleep with the sound of the wind, cicadas and at times; night birds.

One night just as twilight was occurring and dinner was cooking on the open fire a old guy was sitting with my family around the campfire.

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Open fire cooking makes the food taste better — sort of smoky and crispy.

I remember that the bush had that soft orange glow that it gets as the last rays of sun hit the tops of the low bushes and reflects from the gum leaves. There was a quietness in that evening where sound carried for a long distance.

This man was probably somewhere between 25 – 30 years old and seemed so OLD to the young me. He was dressed in jeans, heeled cowboy boots, and a check shirt. His body was lean and muscular with skin that was thickened and dark from the sun. Around his eyes were smile wrinkles with white in the crinkles where the sun didn’t tan due to his habit of smiling.

He gently cajoled me aside from my family through the scrub and away from the fire in that beautiful early evening. I clearly remember the beauty of that soft light on the bushes, and the quiet.

I was a shy farm child but he felt OK and he worked hard at overcoming my shyness until he really had me on my own and had my total attention.

He then gently and repeatedly told me some of the best advice I have ever been given in my life and it was:

“Never go with a man who is not kind to horses, dogs and children.

If they are not kind to horses, dogs and children they will not be kind to you.”

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Check out how people treat their dogs and that is how they will treat you.

He asked me to repeat it for him to show that I understood and then lead me back to the fire.

In my life, I have noticed that this advice is true for both men and women — if they are not kind I know not to give them much attention — to leave them alone.

The times I have not used this advice I have always regretted it.

I have never forgotten that man and I wish I could thank him.

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Was I Stalked?

Sometimes life works in mysterious ways and a chance meeting results in something that over the course of time becomes a situation that is beyond your wildest dreams.

One of my friends is an artist and from time to time he holds a huge party at his home and invites all sorts of people who come to buy his art.

These parties have Spanish Dancing, a huge outdoor wood fire and all sorts of wonderful events and different people.

At one of his parties there was a live South American band that was all rhythm and pan-pipes. The singers in the band were dark short and chunky South American men all machismo and flashing eyes.

They were men who knew their masculinity so they strutted and sang and played their hearts out and in between eyed the women.

After the band finished one of the band members made a bee line over to me and introduced himself as Ziro.

Ziro was a dark haired, short stocky man of about 40 years of age. He asked me all sorts of questions and I answered him in an absent-minded way as the party was pumping and I was too distracted by all the people and experiences.

Ziro started to tell me things about myself that had occurred to me over the last 10 – 15  years. He told me all about my dogs and when I got them and how I treated them. He told me about the different clothing I had worn over the years, and then all about my parenting and child. He knew where I lived — what car I drove.

It was like he had been stalking me.

He finally had my attention so I turned and actually saw him for the first time. I really looked at him and asked him how he knew what he did about me.

Ziro then told me a story that opened up a memory from a very long time ago.

The story was about a time in my life that I would rather have forgotten, in fact I had sort of put it out of my mind. My thoughts just came up against a closed door, however as he spoke the hinges of that door were squeaky and the door a tad jammed yet slowly my dendrites started to fire and that memory seeped back. A tad fuzzy to start with and then that memory was again clear. The door to that recollection was open and here is what happened.

When I was 35 years old I had a wonderful relationship with an intelligent and fun man and had been with him for 5 years. We had done some magical things together and life had just been one fun change after another because we both let each other live without limits. However, as I do every now and again in life, I had started a new theme of learning and it was all about emotional intelligence, co-dependence, interdependence  and spiritual matters. I was no longer so interested in what we had been doing for the last 5 years which was business, computers and travel.

My partner was still very interested in what we had been doing. I was feeling really passionate about the subjects of lucid dreaming and emotional empowerment, I wanted to understand my motivations and the motivations of others.

We were no longer so compatible and it was getting boring for me and who knows how he was feeling with my nutty talk about dreams and interdependence. To be honest I believe that he actually was fairly emotionally intelligent so probably didn’t need to learn the things that I did. Therefore we probably became boring to each other.

I truly loved this man and had bought him a beautiful purple spinel ring that was hand made for him by Geoffery Allen. It was a very heavy gold mans ring with a thick band.

One day we were having a painful conversation and we were feeling the stress of our incompatibility along with the love that we had for each other.

In one instance I watched my partner and my best friend walk over to a door and place his hand on the door-knob to leave the room. As he touched the door knob his hand flew back in the air as though he had been hit by an electrical shock. My partner white faced and shaking looked at his ring and the 19 caret gold band had ripped apart and the edges of the gold looked as though they were torn. How did that happen? To this day I have no idea how this happened.

We both looked at the ring and in shock we agreed that the ring was agreeing with us that our relationship was over.

I have to admit that I didn’t really believe in signs at the time however, this situation was so strange that we both just agreed that it was a physical sign.

Our relationship fell apart, just like a cardboard shelter in a storm it folded crumbled,  and finally ceased to be as it was.

It was such an awful process, I found leaving someone whom I loved like a slow boat to hell, once you are on it you can’t get off and when you get there it is too late to change anything.

A small part of me knew that it was really right that our relationship went the way it did and the larger part grieved as never before.

One day during this extremely confounding and painful period I was driving my Mercedes Sports SLC 500 and crying – sobbing my heart out and I came to a corner in the centre of Fremantle.

I was at a corner and going to turn right and as I slowly let go of the brakes to turn a man landed on the long bonnet of that car.

That long bonnet of the Mercedes

That was Ziro. He had been walking across the road and I had not seen him through my tears. As I slowly moved forward he decided that jumping on to the bonnet of the car was the safest place for him so that is what he did.

I stopped the car and slowly got out as he scrambled off the bonnet. He took one look at me and said:

“Are you alright?”

I was flabbergasted – Somewhere in the back of my mind I knew that I should have been asking him that question however my brain just stood still – it was completely silent. I was unable to speak.

After a few moments he assured me that he was OK and after a few more assurances I drove off.

From that moment on I was oblivious to him and his life, it was a memory I had just conveniently suppressed, however, for him it was a different experience from that moment on Ziro noticed everything that I did.

Many years later he was able to approach me at a party and get to finally know me…

Life has some strange twists and turns.