Coming Out …

We often associate the term Coming Out with a milestones within the gay and lesbian community. Coming out as a gay person, I believe, is a very big step and is probably filled with many emotional challenges. 

I am mindful of how difficult that coming out must be for a gay/lesbian person and I can only imagine what reactions they encounter from their friends and loved ones. I won’t pretend that I know personally. 

I like to believe that friends and loved ones would want to know and want to share their support for their gay/lesbian loved ones, but I know that the reality can be vastly different. 

After centuries of discrimination and oppression the homosexual community still have many struggles and still fight for basic human rights. Sometimes I find it difficult to believe and even harder to accept that this is where we are as a society. Still. 

However, this piece is not about the plight and the rights of these brave and wonderful people; although I do hope I live to see sweeping changes in my life time. This piece endeavors to draw tenuous similarities between how people feel that they must hide their realities from main stream society. 

In the case of the chronically ill, rarely will we make our struggles known or publish pictures of ourselves when we are sick or suffering with chronic challenges. Even with other chronically ill fighters. 

I can only speak for myself, but it feels as though it’s not allowed. There seems to be  an unspoken rule about showing anyone your truth; so I don’t. 

If I post a picture of myself on Facebook or social media I will endeavor to show myself at my best, even if my best lasts only for an hour before the meds wear off and I am in tears and pain again. Even if my best requires assistance from my husband/carer and strong drug cocktails. 

Sometimes a forced smile and an outing is too much to manage, despite how much I yearn for them. But I feel that sharing my pain and reality with the rest of the world will somehow make me even less acceptable and label me as a whinger or seeking sympathy; So I don’t. 

The truth is that the last thing I want is sympathy. Sympathy doesn’t change or help things. However I would like people to know that there are reasons that I am not the person I was and hope that it might help them understand a few things through my eyes and reality. After all, we become close to others my getting to know who they are and their experiences of life. It’s how lasting bonds are made and sustained. 

Sometimes I have posted a picture on Facebook of a swollen joint or a painful spasm and I may get a comment from a few fellow chronic fighters wishing me good luck and comforting thoughts, but rarely from healthy friends / family. Rarely do they make comments so it makes me feel like it’s not acceptable and that I should keep my realities to myself; Despite leaving comments about their children’s party, their last meal, their holiday antics or their smashed up cars. 

Those of my friends or family who have had children and have shared the difficulties of sleep deprivation and various other child raising issues seem to get a lot of support and appreciation from their social networks, but that same appreciation  doesn’t seem to extend for those of us with chronic issues. Why? 

Coming out as chronically ill person who must deal with pain, progression, a myriad of symptoms, fatigue and isolation, it becomes a huge decision and carries with it great risk and consequences . 

You stand to lose friends, family, employment and many other opportunities, through no fault of your own! It’s incredibly unfair and indescribably painful! 

It is also worth mentioning that there are even some chronically ill people that may feel the urge to judge you as well. Perhaps this is where the chronically ill and the gay community differ, I hope that they don’t judge or criticize each other for coming out or sharing the realities of their everyday life. 

I have been forced to think that my reality might seem very boring or uneventful to many people so I try to edit my life accordingly. 

I long for the day when sharing a recent struggle or painful event is acceptable for public consumption and will not cause  embarrassment or labeling from friends and family. 

I often shake my head when I think that this is a time where it’s normal to share naked selfies, sexting, and pictures of drunken exploits but shameful and self indulgent to show the cruel effects of life with diseases. 

It seems that even today in 2017 the rules of dont ask, don’t tell apply to many different groups and many different situations … and almost always hurts those who least deserve it. 

But I will always live in the  hope that things can, and will, change. 

Gentle hugs, 


To Treat Or Retreat?

I am at a point in my journey where the past years have seen me do many tests, take lots of drugs, visited many specialists and receive more diagnosed diseases… 

I find myself asking “how much is enough?”

Rather than continue down this road of unearthing more issues and starting new drugs for diseases that have no cure, I now wonder whether I may be better off simply spending the time coping and finding a little place in the country to simply live out my days as best I can. 

This is incredibly inviting to me at this time since there doesn’t seem to be any way of avoiding or curing the pain and disability that I now live with, so maybe the time I have left can be better spent and more enjoyable living the simple life. The life of a country recluse. 

I have been looking at tiny country cottages and imagining a life even more removed than I already am. 

What could possibly be wrong with such a plan? 

Even the stress of suburban life, city traffic, constant specialist appointments and urban sprawl is too much for me now. I yearn for even more simplicity. 

I feel now that I really don’t need much in terms of luxurious accommodations, a simple ‘disability friendly’ home is all that is needed. A garden to sit in. Room for my furry children to roam, living within  driving distance to stores and supplies, and within safe distance of a hospital in the event of a medical emergency. 

It is tugging hard on my heart strings! 

I guess I really won’t know if it will work unless I try and perhaps there is a way of ‘dipping my toes’ into such a life first? 

While the questions have been swirling around my mind and heart I keep asking myself “… should I continue to treat or plan my retreat?” 

At least I can say without hesitation that after 10 long and exhausting years I have certainly done an enormous amount of treating and now I should consider giving myself a chance at the alternative. 

… to be continued 

Gentle hugs, 


Dark Pools

Some people are like dark pools of water. Irresistible and mesmerizing. Drawing you in and filling you up. 
A soothing bath. Warm. Surrounding. Penetrating. 
Deep with unseen knowledge and emotions. 
And you will never want to leave, 

and you can never forget. 




You don’t marry the person that never hurts you but the person who stays to help clean up the pain for as long as it takes. 
You don’t marry the person that is easy to be with, only to live as two friends and nothing deeper. You marry the person that you can’t live without. That you can’t stop thinking about and feeling them moving inside you. 
You don’t marry the person that offers you wealth and comforts so you have nice trinkets and a fat bank account. You marry the person that offers you room to grow and things to work on. 
You don’t marry someone because it’s your time. It’s your duty. Because your scared of losing your chance. Because all your friends are married. You marry someone because your heart is ready for challenges you can’t possibly imagine and a journey with no destination. You’re ready to let go control of your heart to the person who wants to protect it with their life. 
You don’t marry someone with a plan of what to do if it doesn’t go your way or when it gets hard. With an exit strategy. You marry someone by diving into the unknown with your entire being, so you must fight for it, knowing there are no safety nets but the ones you make together. 
Marriage is not about vows and words, but actions and feelings. 
It’s not about gifts or titles, it’s about promises and dreams. 
It’s an invisible connection binding your hearts and directing you like a compass, with the strength of an orbiting planet. An unstoppable force. 
Marriage is the fertile ground where everything grows and flourishes and where beauty is everywhere, even in the darkness. 
It’s a smell that can’t be bottled. A feeling that can’t be explained. A place that can’t be found on a map. It’s an unbearable pain and unspeakable beauty. 
Marriage is more than love. Love is only an ingredient. A mere sound in the opera. A colour in an endless colour pallets …
but love is the spark. 

The beginning. 

The smell before the rain. 

The first leaf of Autumn. 

The belief. 

The hope. 

The reason. 
… Until death do us part

Limits … 

This piece is more a collection of personal observations and thoughts from my life. It has an overarching question that, I feel, links these themes and ideas, but it takes some explanantion, so I will do my best. 

However it comes out, I still feel these ideas very deeply and they have been formulating inside me for many years now. 

It goes like this… 

In life I have encountered two main types of people. Those who seemingly reach a certain point and plateau, whereby any further change, learning or development seems almost impossible; at the very least highly improbable. And those who seem to be ever evolving and growing exponentially. 

The first type are the people that are exactly the same as the person you may have met in high school or have known for many, many years. They can be a relative or practically anyone in the street. 

Nothing has changed on a behavioral, emotional, intellectual or personality level. 

When you meet such people it takes a relatively short time to ‘get to know’ them, who they are, and their limits. 

This can be endearing in its predictability, but… it can also mean that the years can cause a wider and deeper separation as you change and they don’t, or can’t. 

And then there are those people, a much smaller group and extremely rare, that have changed and evolved, and continue to do so as life and time moves on. 

They are truly surprising and wonderous to me. 

I have always tried to use my energy and efforts to grow and evolve from each thing that I have encountered in life. It has been my credo for my entire life. 

I realize that there are some things which are strong character traits to my personality but I have also seen a great many areas of change and growth through each new thing that life has presented me. 

Society today seems so obsessed in pushing physical boundaries with such things as extreme weight loss, extreme sport and various other physical pursuits, yet few people think about expanding their emotional and intellectual capabilities or personal development and growth. 

It seems so sad to me and a waste of most of our potential as human beings. 

Over time our physical abilities will change and lessen, but that is not necessarily true of our other dimensions if we make such things a priority and give it meaning. 

I now turn to the topic of illness and physical disability but only in the context of this theme. Originally I thought that becoming physical impaired and chronically ill would limit and halt my abilities to grow as a person and that I may even regress as my world grew smaller and less social, however I am truly amazed at the way I have been able to make some very surprising and valuable changes. It has given my life new meaning. 

Through adversity I have learnt humbleness, empathy, patience, resilience, self worth, prioritizing, emotional honesty and vulnerability, persistence, coping, forgiveness… and much much more. 

It still puzzles me when I encounter people who, although still physically able, have seemingly reached their limits of personal growth, however I recognize and respect their decision to do so. Perhaps they may not have physical limitations but they may have much deeper limitations which influences them on a much more profound level. Again, it is their right and I acknowledge that. 

To me, it only makes those people who have changed and evolved throughout their lives, and who deliberately try to do so, even much more extraordinary and precious. And I am grateful when I encounter them. 

Like shooting stars, they are amazing to behold and a very rare event that we seldom forget. 
Gentle hugs,