Alopecia and Me

There’s a balloon on my head or at least that’s what it looks like. How do I explain alopecia in terms that people may empathise with and dare I dream even understand? Our immune system is meant to fight infectious organisms and substances but mine decided over 25 years ago that this includes my hair. Yes, my own body’s defence mechanism went on a friendly fire offensive against my hair cells and killed them.

First it looked like hairs on the pillow and soon there were none left on my head. By none I mean none, at times of stress I have no hairs anywhere on my body that a woman would. However, I did notice little white hairs on my arms on Monday, which some may say but everybody does Fi – well my body hasn’t done so in over twenty years! My hair has grown back once and nearly back twice only to fall out again within a few months so now can hardly remember what it feels like to have any hair at all.

Being bald drained any outward self confidence, the bullying at school left their own scars to make for a vicious cocktail inside of me. Looking in a mirror became a phobia as I was scared to see the freak in my head in flesh and the ogre have physical form. I had zero therapy to understand it all and the doctors were as useful as chocolate teapots when I could see one but even then the control of my life was not in my hands. It is only now I have accepted fully that it is part of me, I will never be able to stop others reaction to it and do not care what they might say or do for there is no cure to reason to laugh at me. I am overdue buying a new wig, I feel like a change…one thing is for sure I’m not going blonde!

© Fi S. J. Brown

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The Supermarket Dream

As well as deep thinking I have an active imagination and visual mind that like to play even in my dreams. For example part of a dream the other week included a koala feeding me at an Indian restaurant whilst he sat in a bin! They are often a dark comedy that doesn’t often make sense at first but when I stop to think them through they do.

Here’s what I remember of last night’s dream: I was outside a supermarket before it opened and decided I fancied something to eat when it opened. The store had recently been renovated so prepared to be lost trying to find what I needed. Only when I went in the store it was huge and had everything I could ever want or need and seemed like it was expanding as I looked. I only wanted essentials but other things kept coming in to my basket that I didn’t want. When I decided I had enough there were no tills to be seen or people to ask. I found what might be an exit and decided to try it as even if triggered an alarm someone would help…right?! It did eventually but they shook their heads when asking where I came in, which was miles from where I was then and uncertain how I had come so far. One of them took me to the biggest virtual flatscreen I had ever seen and said if I wanted to simply choose not browse I should have used this but with all the endless possibilities how could I? So I was sent in an elevator. I pressed a button to go to the tills and buy the small selection I wanted but the elevator voice spoke saying “are you sure that’s all you want, I don’t think so! There is much more in store!” It sprayed me with a liquid soaking me and my shopping! I then woke up.

What do I think it means? It’s a way of seeing my life, with endless choices and possibilities. I try to exit but that wasn’t an answer. The more I try to work out what I want the more complicated it feels. I only want a simple life but what does that actually mean? I only ever wanted a place to call home, a dog and be happy with a job I enjoy doing. As to what that job is has been a constant headache over the years as ignored my instincts. Although slowly feel I’m getting there at last.

Dreams are odd things breaking that one down finally makes sense of what my waking mind has been thinking. Hoping I am finally seeing my true path and not more trees growing blocking where I thought it was. I am nervous but excited by this development. Who knows what’s next and even if we knew would we really want to?!

© Fi S. J. Brown

Will you join me?

In a world that the visual image has been heavily manipulated and spun almost as much as the written word how do we know what we see is real and the people in them actually exist in the form we see them in any shape or form? Praising those that exemplify the fake a la Kim Kardashian to Cheryl (whatever her surname is right now) and putting them on pedestals of what 21st century beauty should aspire to be. In contrast calling someone brave for their attempts to step away from it as though they are being daring for to go without make up to choosing not to have Botox in their lips by the age of 22. Personally I find it ridiculous that we let someone’s manipulated image show us what we should look like and aspire to be as in reality nobody can look as they’re shown to be without deception to surgery. Some may say it is not their fault but sadly the golden carrot of money is often enough to make many follow blindly like a sheep or dance like a puppet on stage.

We do not need designer clothing but clothing that is made fairly for those making them under often horrific conditions to the consumer that will wear them. Fashion magazines and websites are built on insecurities that we all naturally feel and urge us to change with the seasons and years but as we all realise soon enough they come round again at least twice or thrice in our lifetimes! Fake tans to skin bleaching almost make us feel bad for our natural skin tone and heritage yet why should it, just look how stupid racism is and judging another based on their physical form of family history. Instagram or Snapchat filters for a bit of fun or help us hide behind masks as feel we fit in better so won’t be judged or laughed at…and even worse perhaps encourage more likes on social media. These likes that eat in to our self esteem that we must have so many likes in order to feel pretty or approved of by others; we are sugar coating our lives with unnecessary filters.

How can we learn that the imperfections we see in the mirror or talk to us in our heads are not things to air brush or filter away? Differences are seen as flaws not part of what makes us the unique person we are and the word ‘normal’ used for humans when there is no normal or average human being! There is no life Photoshop to change what we do not like about ourselves and lives, although I am sure we have all seen others try rewrite their history. Our individualism is under attack as now rather look and act like our favourite celebrities than the real us. However, as I said before these people are paid to edited to look the way they do to us, and make us feel bad over the slightest of things. Can we keep living in a world so fake and ultimately lose our individualism? I do not think so. So it is time to start the fight back, I refuse to bow down to someone’s manipulated idea of how a human being should be. Will you join me?

© Fi S. J. Brown

I am what I am (a.k.a Self Portrait 2018)

Five years ago I posted the photograph below with the words written upon it describing my journey recovering from Body Dysmorphic Disorder (BDD), self-hate, and low self-esteem. Today things are very different and this entry describes how things are today. If I am honest I still did not think I could ever reach the point of body and self positivism as the negative hung around like a bad smell I could not get rid of. Looking at old photographs I can see and feel my pain with part of me wishing I had the keys to a time machine to reassure myself but know I probably would not believe myself or recognise the person as me. The ogre that once lived in my head has been truly vanquished, such are the incredible healing properties of self-acceptance and happiness. Actually, I thought I was not allowed to be happy as was meant for others and not for me. Now I realise happiness takes many forms, and I have the right to that as much as anyone else on this planet.

In an age when judgement is made so much on our physical form it makes me still at question if I fit in. Judging on physical form deeply saddens me as know there is so much to us than our shell of many colours. To those that think looks are everything consider the following: when you see an iceberg you only ever see the top of it not what it actually looks like in physical form (this is like judging someone from the clothes you see them in and only desiring the slimmest of figures); equally consider a swan that as a child looks very ordinary but becomes a beautiful and majestic bird (this is akin to judging someone based on their past alone, not who they are in the present and what they may have overcome); and finally consider if the music remained only oral and never visual with those you judge their music based on their sex appeal you could never see (this is like basing your attraction on a walking puppet controlled by someone unseen where nothing is actually real).

I know I am not an ogre but I am equally not a Hollywood A-list celebrity, but then again I would rather be the ogre than the Hollywood star! Accepting me as me has been far harder than academic study; although on saying that my PhD was one of the greatest stresses of my life to date. I am me, not the love child of Frankenstein’s monster and the Hunchback of Notre Dame as I used to think. Which was replaced with Pablo Picasso’s ‘Woman in Hat and Fur Collar’ for a bit as I attempted to readjust the mental image in my head. This was followed by a patchwork doll made up of patches that represented all the different things that make me, me, and stitched together with love from those that are special in my life. However, now I see the same image others see in my photographs and smile like I never thought I could, it used to physically hurt my face for starters. If I was to have any other visual of me it is of a Matryoshka doll, because there is more to learn about me even when you think you know me well I will always surprise you with another layer to what makes me the uniquely beautiful human being I am.

© Fi S. J. Brown

5 years ago.jpg

To Be Free

Every time we leave home,
A road full of routine we follow blindly,
Into a world that seems unchanging.
Familiar faces exchanging glances,
Old places that we remember being built,
As memories rush by of times now gone.

New places seem frightening in contrast,
In a world where nothing seems to last,
And in a blink of our eyes it is gone forever.
Everyone just wants to fit in labelled boxes,
Normal as just who wants to be different?
We are all individuals but collectively one.

We find comfort in the routine,
The intimacy shared like a loved partner,
That we trust with our every heartbeat.
With changes bringing out our distrust,
As begin to question their loyalty to us,
And reach for prayer that all will be well.

Just as we loathe the sound of Monday,
Friday always seems just out of touch,
And weekends are over far too quick.
Letting time tick with a monotone beat,
Seldom stopping to learn our rhythm,
Dancing away like an one trick pony.

Many simply call it the ‘rat race’,
But then who’s laboratory are we in?
And who are we in competition with?
Part of someone else’s experiments,
But how to escape the hidden cage,
When there are no bars to break free.

Bread to fear the change of constant,
To fly away requires thinking anew,
Going the detours with an open mind.
Following a compass of our free souls,
Discovering the hidden life that awaits,
Free to live and dance the way we want.

Travelling awakened and refreshed,
Saying yes to invitations to the new,
Returning home enriched and fortified.
Living our lives with the fullest glass
And in the moment not past or future,
With happiness written upon our faces.

© Fi S. J. Brown

My feet doing the talking

This quote is often attributed to Ghandi:

“Your beliefs become your thoughts,
Your thoughts become your words,
Your words become your actions,
Your actions become your habits,
Your habits become your values,
Your values become your destiny.”

It reminds me of the phrase actions are louder than words as we may talk a good talk but do we actually live by them? These days of social media it all too often that people can make themselves into what they want to be seen as by the world, in some ways reinvent what they may dislike about themselves or not have and be seen in a positive light or new way. Personally I do not see what the point is in doing so as at the end of the day the only person they are truly fooling is themselves. I do not pity them but more shake my head that they feel this is their only way. Equally life has a habit of catching out the liars and thieves, frequently biting them on the bum for doing so. I have been a believer in karma for a long time so let it do the hard work and not seek out to hurt another if they have hurt me or someone I love as know she will ring their bell, maybe not tomorrow but she will, and when does catch up with folks it is best to watch from afar as she does.

On this blog I often write about mental health, my story to experiences and journey so far in life. These are but words from my memories and thoughts, and never expecting anything in return from anyone; if I have made someone stop and think or helped them feel less alone then all good. However, I have also realised I needed to do something beyond my words to help end the stigma of mental health and help those that have no voice to speak up on it or how they feel due to it. Therefore I have decided that on the 1st of July 2018 I am going to let my feet do the talk for a change and walk 20k (12.4 miles) in aid of Scottish charity Support in Mind (Scotland)It is my chance to put these words and thoughts into actions and my habits of walking to ecotherapy to help with my mental health to become part of my destiny. I would be honoured if whoever reads this (if they haven’t already done so) to sponsor me via this link, but do not feel you have to and thanks in advance if you do as greatly appreciated.

I have not fully made up my mind yet but I am considering doing the walk (if not in part) without my wig (I have alopecia universalis) as part of my long term recovery from body dysmorphia as to me that is just as important as walking this walk for those who walk in silence every day as are frightened or abused by another to recovering from their own demons of the past and present. What matters to me is to do a challenge that says to me I can do whatever fate and destiny ultimately have determined my path to be; no matter what stones I may fall over along the way I will keep walking forward and not back as put the bed what has hurt me before and let karma play her games with them. Then I will enjoy the birdsong that reminds me of friends near and far that are walking beside me even if I cannot see them in person very often. I am but one person to change the world around me and ignore the doubters. Remembering it only takes one person to believe in us and when they do the domino effect rolls out on and on, near and far, and together we can change the world for the better.

© Fi S. J. Brown

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The Room

When my depression was at its worst it felt like I lived in a room with no light, be they electric or natural. I could not escape the room as I was a prisoner, but equally I held the key if I only knew where to find it. I knew there was something large covered in cardboard, that I would only notice when I finally discovered there were curtains. My knowledge of the world outside the room was from stories others had told in whispers to songs and books. Despite the darkness I had always found ways to hear and see them. Was I frightened to remove the cardboard? Yes and No. Initially I would say no as did not know any different, and yes when I found the cardboard I was frightened as uncertain of what lay behind them. It was almost better the devil you know than the devil you don’t.

One day while daydreaming and pondering curiosity challenged me to try remove part of the cardboard to see what would happen. I accepted, despite my initial fear. It led to a glint of light shining into my darkened world; creating something new that I never realised I needed so badly. Gradually I decided that I would remove the cardboard to see what lay beyond as the light I was seeing from the small gap intrigued me. Bit by bit I slowly removed it until I saw what appeared to be a large window that looked on to a large garden and rolling hills. The view made me cry as felt more a prisoner than I had ever done before, perhaps the curtains and cardboard had sheltered me from the truth. Equally I saw the room properly for the first time. It held – a music player with vinyl records, bookshelves of fiction and non-fictions, a chair, table and bed with cushions. Simple in some ways but I guess held all I really needed for living, if you could really call it that.

As days past I found myself looking more and more to the view beyond. I had not looked to try find a key to the door, which took me a while to notice even after the cardboard had come down. How was I to make the journey to the view I kept wondering, for the only openings appeared to be firmly sealed shut. Was I destined to forever dream of this world that I could see and not use any other sense? I looked at my collection of items and thought…what would happen if I smashed one of the windows, could I not climb out and escape to the world beyond? I mean, I already had scars (physical and mental) what would a few more make in the name of freedom?! I took an old jumper and tied it round my left arm hitting one pane of the window, partly in hope and partly in wishful thinking I could finally be free.

The air that came through the crack was hypnotic filling the room. Gassing me not in toxins but fresh air’s taste and tickle; it even allowed me to hear the sounds from outside like birds in song. The window then became an itch that I had to scratch, knowing I had to make a larger hole and remove myself from my prison. It was only as I had removed the largest pane that I saw a mirror in the room and saw my reflection. In it I saw the face of someone I did not know but knew she deserved my love and respect like any other. As the tears fell on my cheeks I saw what lay round my neck, the key as a necklace. I shook my head, it had been with me the whole time but it took going through all to realise it. Much like life, what we need is something inside ourselves and do not realise that until the last moment.

This left me with a predicament, did I take the door or the window? As I knew not of where the room was and what lay beyond it, but instincts said best to help myself first before trying to help others (if there were any in this place). I took my step outside the window to a ledge and took a deep breath…I was free but where to now? I saw a drainpipe so rather than jump into the garden of the unknown I would slide down slowly into it. The garden at first glance was even more beautiful than I could have imagined from the window, was this like the biblical Eden? I looked back up at my window I saw all the others were covered in cardboard too, hundreds of them. In that moment I knew my life did not belong there and to head for the hills for the garden may hold hidden dangers if I stayed too long…or even worse returned to my cell.

It was in the foot of the hills I found a cottage and where I now live; listening at dawn to the birds that bring me news of the world to enjoying the other gifts that the natural world brings. The sights, sounds, tastes, smells and feelings they bring with hope. Day by day I walk further and further up the hills, knowing one day I will reach the peak and climb over the other side. I will see how far I have come from my darkened room and know I am finally free. For now I look back with the shadow of the room, house and garden within a few miles, so still hanging over me. I am determined to reach that peak and the follow my path in the light, far away from the darkness the held me prisoner for so long, accompanied by bird song that keeps me going through day and night.

© Fi S. J. Brown

The Privilege of Old Age

I haven’t written for a while as much has been happening in my life that’s left me more than a touch stressed and emotional.

Where to begin… My semi-estranged father has cancer, he developed secondaries and is now terminal – he is also paralysed in what he calls god’s little joke over the Easter weekend. He recently turned 81, an age neither of his parents reached and both died before I was born (three years and eight months respectively). Discovering his mother and grandmother died of breast cancer through a throwaway comment from my mother has added a layer of stress I did not need to have. As he has no siblings I have no idea of any personal risk to myself or nieces.

Weirdly I only saw my first pictures of his parents in the last month after my eldest brother took to scanning old slides my father had taken in the late 1960s to early 1970s. It was funny to finally see images of people that shared genes with, but I felt no connection to or reference point other than being my father’s parents. My brother also scanned slides of my father from fifty years ago, which included him posing with a mug of tea…I guess some things in the genes I never realised before! Those that have seen the few I have posted to social media have seen the physical resemblance between the two of us.

I am also dealing with my mother, who is waiting for a hip replacement operation (she is not in pain and is muscular) but is not quite prepared for how big an operation it is. Her worry is understandable but trying at times to out do my father for my emotion, ensuring I worry about her over him. It is hard being an empath when she is an emotional vampire and knows what she is doing as plays the victim like the narcissist she is. She turns 75 in August, retiring at the start of the year, but does not realise the people she often calls old are younger than she is! Her parents died when she was young, and have only heard snapshots of what either were like as people and never seen an image of either of them.

My father calls me the English one, and yes I have always felt more connection to England than Scotland. I am hoping to visit his home town this year to see the streets and places I know family lived to try understand part of me as feel I do not know where I belong or who I take after beyond much of my interests are similar to his. So many questions but realising that I will never have the answers. That is perhaps what is hitting me the hardest after our estrangements over the years, and feeling I never knew him as a person. I could not even tell you what his favourite colour, television show, or song is for example.

This makes me in turn wonder about both sets of grandparents – how they lived their lives, their interests and what they would make of the world today. As neither grandparent saw true old age it makes me wonder not only will my siblings and I see it, how different the world would be from the one I have seen many changes in my almost 40 years in another 40. The world feels like it is in such a mess right now I also wonder will there be anything left in 40 years time or would I recognise it as the one I grew up in. In one year I will be older than my father was when I was born. Makes me laugh when I explain the pre-internet world to younger people makes me feel like a dinosaur some days, but I am an old soul too that compounds things further.

Last Sunday I saw one of my mother’s best friends that has severe dementia in a care home, which has the worst reviews you can imagine…! I am the first to admit I cry easily but seeing a woman in her mid 80s reduced to a child with a television blaring whilst water and food were out of reach made me sad for her and angry at her daughter having known how badly she treated her. I felt like I was feeling the pain and loneliness of all the older people that have nobody. B is a gentle soul but nobody deserves to be left in the care of others that only work there due to the free parking (I joke not). It feels like we are so obsessed with youth that we do not want to consider the other end of the spectrum, and may yet end up living in a world like Logan’s Run.

Seeing B made me realise my sad reality, unable to have children with no financial savings or home of my own that there would be nobody to be there for me. Yes, I have close friends but would never expect anything of anyone, although I would be first to be there for them and help in any way I could. As for my siblings – my eldest brother is as useful as a chocolate teapot that’s been put in a microwave, the other is caught up with his with and daughters so rarely speak, and my sister is hardly part of my life.

The privilege of old age comes at a price, do I really want to pay it? Do we really want to live longer, or dare I say forever as the pay offs from here do not seem to be worth it. Almost an illusion like the one to look younger; surgery, needles and knives create masks but cannot change what’s going on inside our bodies…why have the face of a 35 year old when your body is that of a 70 year old!? Surely if we do achieve old age we should be proud to of it, an achievement like any other in our path. Respecting older people should be part of being human, but alas like so many things these days it is becoming less and less.

Tomorrow is always a whisper away that all too often we try to put off things until it comes but of course it never does come (or until we have no further option). If anything old age should tell us not to put things off and enjoy them while we can now. Life changes in the click of a finger, for better and worse, which is why living mindfully is so important. It is too short to have regrets or not taking opportunities. I may not be a risk taker but I’m learning to swim (not jump head first without looking or keeping my toes dipped in and out) and embrace what my life is all about…if I reach my 70s or 80s it will be a privilege I will be proud to have achieved.

© Fi S. J. Brown

Being a mother

As I write this on Mother’s Day around the world my social media feed is full of posts on people’s mums that have a special place in their hearts to their own children that mean the world to them.

There are group of people we rarely mention on Mother”s Day, those that have loved and lost a child, which causes a pain few can ever begin to imagine. I have also noticed few posts talk about non-biological mothers, the step to foster and adoptive mothers that come in and give the love to a child that is not biologically part of them but are still part of their hearts.

Being a mother is something very special that we often take that bond for granted. Not all mothers are best friends or understanding, some are abusive and hurt their children emotionally, mentally, and/or physically. Having a narcissistic mother that makes everything about her, controlling your every move, and hates when break free as you have done her wrong.

Yet what about those that are childless? Not everyone wants to have or is able to have one. I felt in my teens I would never have my own and now I know I probably won’t, not 100% by choice for my body says no. As for adoption it is certainly been a consideration in recent years, but I can only see me adopting a furry child that barks and woofs than one that speaks and walks as a human does.

Mother’s day is a privilege to have and share with either one we have given birth to or one we have taken into our hearts. However, please remember it’s not a day of joy for all, from those that have lost to those that are victims of their mother’s action. Equally, to those of us that may never understand that unique bond, we are not failures or freaks, we are loved as siblings to aunts and friends.

© Fi S. J. Brown

Watch our language

Mariah Carey is hitting the headlines this week, not for her diva behaviour or music for once, but for acknowledging her mental health and that she has bipolar. Although she may not be a singer I like on many levels, however I have empathy with those that like myself that have mental health conditions, and having friends with bipolar I know the ups and downs even with medication can be horrific to deal with.

However, it is the language that I have seen used that disturbs me the most. Headlines that say she IS bipolar…would we say someone is cancer or diabetes, of course not so why do we say it with mental health? Why does this matter? The way language is used shapes how we see things, and in turn perceive the world around us as words evoke images and ideas. If I said my skirt today is blue and purple I’m sure you all will have an idea of those colours having seen them throughout your lives and interpret how it looks. By calling Mariah bipolar rather than saying she has it has a way to conjure up images of stereotypes from movies or TV shows of what this disease is like and continues the stigma as believe the stereotypical crazy mental health hospital patient. Their individuality is lost as seen as a label not a person. This negativity can effect their self esteem, hope for the future to accepting of help and negatively impacts on recovery to reaching out for help when they need it in the future.

The difference between physical and mental health in the ways we talk about them is from the past filled with scientific misunderstanding to social ignorance, which had those that have them seen as witches to possessed by evil spirits, or even as a sign of weakness or failing. The reality is that these illnesses can happen to anyone; they are biological and arise from a combination of genetic predisposition and environmental impingement. We can no more ‘be’ bipolar than we can ‘be’ cancer. We cannot ‘just get over it’ and is not ‘all just in your head’.

When we have an opportunity with social media to humanise or dehumanise others when we talk about mental or physical conditions, so please think and use your words carefully.

© Fi S. J. Brown