A Labour of Love Part 4

I’m having coffee with one of my favourite people, Cindy Rochstein, when I learn her powerful story. Four time author, PR consultant, public speaker and founder and CEO of a charity called Pencils Community. If you are like me and hit it off with Cindy, when you talk to her, you discover she has a story she doesn’t often reveal to others. A story about self-acceptance and self-love. It helped me look at the world in a different way and so I asked her to share it with me.

How to love a shark…

19389776_10155474079730152_155109675_nTo me, the definition of self-love, is when you can truly look yourself in the mirror and say, “Hey, I am doing ok – I have my good bits and flaws but on the whole I am happy being me.” They say that the people who have lost the most are the ones that have the most to give – because they know what it feels like, and the desire for no one else to have to experience what they have, is extremely powerful.

Like many, I am my harshest critic and any judgement that someone else may have of me, does not compare to my own self-criticism. So, to self-accept means, I must welcome all the parts that make up me, and understand them. TEMET NOSCE. Latin for know thyself.

Some parts I welcome more than others, but I know ultimately, I must welcome them all and that at any point I can turn and look in the mirror and begin work on the aspects that, well, need some extra.

As a writer I have written in the past about this and have come to the conclusion that we are all made up of PEISES (yes that is NOT a typo, and yes it is meant to sound like pieces). The Latin definition and interpretation of PEISES is “Balance”, and my definition reflects this also.

In my view, Life and Holistic Wellness is made up of PEISES: “Physical, Emotional, Intellectual, Social, Environmental and Spiritual” aspects. We all have them within us. Some aspects are stronger than others, but no single aspect defines us. For instance, you could be an ultra-fit marathon runner, and yet be completely void of any spiritual awareness. You may be wealthy with a big house, and yet feel unsatisfied and emotionally closed. Or you might be me. Physically disabled, and yet still emotionally and mentally strong.

vietnam.jpgI was 19 when I left for a trip to Vietnam – I wanted to see and experience the world, challenge myself, and immerse myself in a culture both exotic and beautiful. This was also a time when it wasn’t “cool” to travel to countries like this, with a more safe and traditional path being England or Europe on a Contiki tour. So, I set off on my epic journey to conquer the path less travelled.

Vietnam is a country of amazing beauty, yet riddled with a dark history. The fallout, like land-mines, the lingering presence of Agent Orange, and extreme poverty are the scars that juxtapose against the beauty of the land and its people. I had set out to change the world…the only thing was…it changed me.

The trip changed me for the better; to travel independently, learn some language and culture, gain self-confidence, all those wonderful attributes when you succeed at a personal goal. The emotional, intellectual and social PEISES. There was, one down-side. It was so tiny. In fact literally part of the micro-cosmos, because a tick carrying a disease by the name of Rickettsia, bit me. I didn’t know, but life was about to take a bit of a downward spiral.

Upon my return, I seemed ok, but I knew intrinsically I had changed. Something was wrong. Over the next few years, I suffered unusual symptoms out of the blue. Dramatic weight loss, extreme jaundice, rashes and swollen joints and injuries to my knees and wrists that couldn’t be explained. Twelve long years passed, multiple surgeries and countless tests, dressed in a simple hospital robe feeling alone and vulnerable, while doctors looked for a reason, and finally, a diagnosis of “Rickettsia”. (For those not familiar with Rickettsia, it is similar in some ways to Lyme’s Disease). The unique part of Rickettsia is the cumulative effect over time. You know that joke about the person that goes to the doctor and the doctor says I have good news…we’re going to name a disease after you? In 12 years I had a toxicity level high enough to make me extremely sick. And its discovery made my very serious doctor jump up and down and shout “You beauty! We found it”.

Rickettsia_rickettsiiSince ‘my cure’ of the disease, I have continued to suffer physically. Like Vietnam, my body has scars and lingering effects. Crutches and bandages, from swollen joints and limited range of movement, are a regular part of my day, as are pain killers and the next round of whatever immunosuppressant my doctors want to try. I like to laugh about it, and have renamed it ‘the shark disease’: as long as I keep moving, I am not as stiff and sore, but when I stop and sit, or at night time, the pain can be all-consuming.

I am now 41 – for over half my life I have been in a state of chronic physical pain and have been a pin cushion for every medical treatment available, forever the lab rat for medical staff to experiment with. I’ve become so conditioned to doctor’s appointments and injections I don’t even think about it. The doctor’s love letting the students administer blood tests to me, because their mistakes don’t even register on my pain scale.

Last month’s medical specialist statement was “I know you are looking for answers, but we just don’t have the technology yet to know how to treat you properly, and we do not know how much damage has been done to your body. No-one has suffered this disease untreated for so long and survived. You are lucky that for now, it is just in your joints and not your internal organs.”

Now, I don’t know about you, but it takes some tough-ass mental fortitude to be gracious in hearing this statement is my physical fate. I never knew I could string so many swear-words together in my head. Yet externally gracious and accepting, does not mean I have given up. Acceptance is not defeat, it is not giving up, it is acknowledgement of something I have little control over. I will always look for ways to improve my PEISES. So yes, I will admit to telling you all now, that I have in fact, become a shark J (a sense of humour is often required)!

I like to think that over the years I have gotten pretty good at it. I have learned to separate my physical from my other PEISES (even though I work daily on my physical).  I try to find the inner balance of life; a wonderful combination of Eastern and Western medicines. So as we speak, I am about to embark on round – 982 million of new treatments. With the next drug treatment via injection (this week) combined with golden turmeric paste, vegetable broth, meditation, hydropool, green kale breakfast shakes, and my boyfriend’s newly researched nutmeg drink to help me sleep. Yummy…

However despite all the drama, my mindset, emotional and mental health are strong. I am happy and in love. I have a beautiful daughter and an extended growing family and all I could wish for. I have my physical challenges, but I will not let them stop me. Sharks cannot stay still, so rather than let this mysterious disease control me, I control it.

One way in which I do this is through my beloved Pencils Community.

About two years ago after cleaning up my daughter’s desk I found a mountain of her pencils and just could not throw them away. So I wrote a Facebook post asking others to give me their pencils, and from this I grew an entire organisation and social enterprise known as Pencils Community. One of the reasons that it works so well, is that it is a simple concept that everyone can be involved with. It is my passion and it keeps me deeply connected to my community and the act of giving back to the world.

It covers every aspect of PEISES.

Physical, sorting pencils, even when in pain. Emotional, knowing that these pencils change the lives of children in need. Intellectual, talking to people and communicating the message and the excitement of growing a social enterprise. Social, sorting pencils on community sorting days, meeting the most wonderful and generous humanitarian rockstars (my next book in development). Environmental, knowing that every pencil that comes through my hands reduces landfill and creates a more sustainable future. Spiritual, looking into the eyes of a child that receives a pencils gift and seeing the spark of hope grow, receiving messages from around the world that fire me to do more and to be more.

I feel honoured that Pencils Community has helped thousands across many countries and continues to do so. It is these feelings that keep me building and growing Pencils Community. What gets me out of bed and moving every day, applying my bandages, taking my pain-killers and getting on with life. I would rather wear out than rust out.

I am not just the girl who went to beautiful Vietnam and came back with an illness, I am so much more. I am a shark, and even sharks can love and be loved.



www.pencilscommunity.com / FB/Pencils Community


Melissa Coleman View All →

I’ve always been passionate about storytelling and impressed by the influence it has on people and the decisions they make in life. I love engaging with the projects I work on, diving headfirst into the research, investigation, and production of stories and articles I feel are worth writing about.

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