Cyberbullies & Trolls.

A member of the Tree House shared a link with us as she knew some of us had been having difficulties in the past and at present. This video left her speechless and it certainly stopped me in my tracks. I wanted to share with you, the very same video in the hope that you too, will appreciate Shane Koyczan’s work as a spoken poet.

This video also has captions (Yay!) making it accessible to deaf people.

Maya Angelou said “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” 

I will never forget how people have made me feel over the past few years with their words, assumptions and insults. I have on occasion gone to the police who gave the other bully a warning, who as a result had me looking over my shoulder for quite a long time. That has now passed but new ones inevitably came along. One broke my heart terribly and subsequently others have broken my trust in people. Several openly bullied me online (I hope they are ashamed of themselves) while several tried behind closed doors then searching me out with fake profiles to continue their trail of bitterness.

Nowadays I do not know who I can trust but I do know my conscience is clear having done my best to do right by everyone whilst being true to myself except it is now time for me to stop being at the forefront of it all because people are once again minding what I do or say.

Dr Seuss’ quote “Be who you are and say what you feel because those who mind do not matter and those who matter, do not mind” is one of my all time favourites as one should never change for anyone else.

I contemplated giving up, simply because I had enough of all the ill feelings being inflicted upon and how people seemed to keep coming back for more. A friend once told me that I was a fighter not a quitter and I know once he reads this he will smile., knowing he is being remembered.

Apologies but you will not take another ounce of my strength, my positivity and my spirit which planted the seed of this wondrous Tree House. The dwellers from within will continue to nurture it regardless, helping it to bloom and grow with all its goodness while the bad apples left are outside, to rot.

A bad apple

A bad apple.

Thank you to all of those who have supported and kept me going lately. I know some of you will continue to do so, come what may. Love you all – so much. You are not getting rid of me just yet! 😛

Positivity rules! Onwards and upwards…..

~ SJ (Sara Jae)

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Hungry? By Paul Leonard

Take a look at this picture, do you know where it was taken? What are they waiting for?  Was the photo taken at a bus stop?

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No, this photo was taken outside Covent Garden at around 6pm on Thursday just gone, the day before the newest iPhone from Apple came out.  Speaking with man in the checked shirt, he told me the new phone was due out at 8am the following day and so presumably the line would only get longer … and longer!  (I would of gone back the following day to take a look again, but I wasn’t well enough.)

At this time, there were around 6-8 tents that people had erected to sleep in over night and this queue which stretched the width (and longer) of the front of the Covent Garden Apple Store.  Now, don’t get me wrong, I am a huge geek and love all things technological but the site frankly sickened me!  Scores of people waiting to spend at least £600 of their money on a phone.

The very same evening, some of the Admin Team from Tree House met up for a Chinese meal.  Food was great, company was even better, just the staff were the problem (which we may save for a future post.)  The food was very tasty as I say and for 7 of us, the cost was just over £78.  We were all well fed at just over £11 a head, a bargain.  We had left over food and decided to pay for some boxes to take the food out with us.  The purpose, for midnight munchies?  No, to try and find a homeless person and give the food to them.

Just outside Leicester Square tube, we met Nigel, along with his dog.  Here he is with Sarah, Paul and Sara:

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Anyway, Nigel had left over spare ribs, lemon chicken, some rice and noodles and even some prawn crackers.  (He must of thought all his Christmases had come at once!)  We gave him the food and we made him and his dog very very happy!

This got me thinking about the messed up world we live in.  People prepared to spend a fortune on “fluff and stuff”, stuff that will pass away in time and break and yet there are people like Nigel, who in one day, would be lucky to make even 1% of the cost of the phone (£6) and still have to buy food from their begged for money!  Personally, I don’t agree with giving money to homeless people in case it fuels a habit that perhaps shouldn’t be fuelled but giving food and drink, this is the way to do it.

“Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.”

Nigel, this post is dedicated to you and certainly not the guys in Cupertino, California.  As I said to you that night, “Go well – whatever you do, do it well!”

 

~PAL

 

A Show of Gratitude.

“Yesterday is history, tomorrow is a mystery, and today is a gift; that’s why they call it the present.”

– Eleanor Roosevelt.

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On this exceptionally memorable date, I would like to extend my annual show of gratitude to the doctors and nurses of Charing Cross Hospital who several years ago gave me the best birthday present one could ever ask for. 

A second chance to cherish life and being able to watch my beautiful children grow up of which I intend to make the most of.

I never ask for much but I would very much appreciate it if you too could show your gratitude to our NHS services, especially the Doctors and Nurses who devote and dedicate so much of their time and passion to ensure we get the best care around the clock – please could you join forces against any NHS closures and get involved?

For if Charing Cross Hospital had closed down then, I would not be around today.

And last but not least, to our beloved Tree House and its dwellers for creating such a unique place without any barriers.

It is what we all make it.

Please accept this dedicated post as a token of my gratitude for being true to yourselves.

Thank YOU, to each and every single one of you, my family and my friends – for putting up with me 😉

Carpe Diem – Everyday x

~ SJ (Sara Jae)

The Domination of Nomination Drench.

The Domination of Nomination Drench hits the British Isle like wildfire – pardon the pun!

You know you are deaf when your newsfeed is filled with people pouring buckets of cold water over their heads. Up and down the country deaf people are logging in to see their newsfeed crammed full with friends and random deaf people drenching themselves with cold water. The buckets are not the only means of getting wet, some use buckets, others jumping in their poor children’s paddling pools, others jump into canals whilst holding hands, and one has even used a digger to release a rather large amount of water.

This is happening up and down the country and around the world.

The reactions vary greatly – some people hop, some scream, others remain straight faced, and some literally freeze on the spot. But not before they pass on the fate of the drenching craze to 3, 4 or 5 friends. Even the over 60’s are getting involved! Kirsty’s Uncle Ken – who has absolutely no involvement with the deaf community joined in.

Sara’s view on the latest craze is “It’s fun but some friends are saying they would rather donate to “Water Aid” due to lack of clean water and availability in Africa and 3rd world countries. I asked a few people today what they thought of it and they all said “Why?!” As it seemed to be a case of crowd following just for the sake of it like ‘Neck Nomination’ which was eventually discouraged due to it being so dangerous. As long as people are happy and are sensible about the challenge although I must admit it’s getting a tad boring seeing the same thing subsequently yet its been a hot scorching day so when my turn came, I very much welcomed it!” In the end she was very glad she seized the day and would do it again – which she did after being re-nominated post article.

Kirsty’s video:

And her Uncle Ken’s who is in Greece:

Paul’s video:

See what happens when one goes with the flow? Just don’t feel pressured to oblige – donate to charity if that suits you so.

Yet how did it all start, why are people up and down the country nominating each other – Has some strange plague taken over our minds, or are we simply nuts?!

Who really knows how it started because if one googles ” ice / cold water challenge” it gives you results mainly based in the USA, some by the forces even! So this is not just in the deaf community and not something entirely new sweeping social media yet it is new within the deaf community based in the United Kingdom except that when it first started within the UK, people had to buy alcohol when or if they forfeited the dare. It is the people’s choice who they decide to donate to and if it is a charity or “Water aid” of their choice, so be it.

~ SJ (Sara Jae)

Update: Please read our continued article on “Nomination Drench” by reading “Between a rock and a hard place“.

Update: Even Water Aid is doing it now to thank the deaf community 🙂

Pierce Starre: Breaking free: Part 1

Last Friday, June 6th 2014, young Mr. Pierce Starre set off on his 30th birthday into a 30 day journey of the unknown.  Did he jet off to a faraway country? Sail to the middle of the Ocean? No, he went somewhere better… somewhere closer. That somewhere is right here, on our doorsteps. England! We truly do have a beautiful country, we just need to open our eyes and see, walk a little further from the towns.

Pierce Starre: A child of deaf parents, a caring partner and a wonderful father.

Pierce Starre: A child of deaf parents, a caring partner and a wonderful father.

His journey started in Derby, the place where life finds him now, and will end on the 6th July at Whiston Hospital just outside of Liverpool, the place where his life began; but has never revisited. Pierce did not rigidly plan his journey, just the general path; fate would decide how his journey unfolds.

Breaking free

Breaking free

In the opening of his blog BORN TO BIRTH Pierce tells us that his journey is about exploring the notion of living unconventionally, that too many of us are trapped by the routine of life and we seldom break from it. So far Pierce’s exploration has evolved to something far more than what I believe he was expecting. Along the way he has met many people – all of them with kindness in their hearts, and Josephine the lady who will save the world along side him! His sleeping arrangements have varied over the past 7 days from pitching a tent in the middle of a lush field to a stable and a Wendy house! All of the people he has met, places he has seen and slept can be found on his blog (link supplied above).

I personally have been enthralled by Pierce’s journey so I sent him a cheeky little message asking if I could interview him over the entire period of his journey. To my delight, he agreed! So here I give you a haphazardly put together interview to bring you Pierce’s feelings and views along his journey.  At this time, of asking, Pierce said, I quote…

‘I have a feeling of completeness in my heart. I feel alive.’

Kirsty: It has been a week now so I must first ask how are you?

Pierce: I am in good spirits. I initially was struggling with my foot which flared up due to inappropriate shoes I began the journey in but I purchased a new pair and soothed them in rivers and collected rainwater, it has now cleared up. Hay fever and aching shoulders, due to my heavy bag, are my main grinding factors at the moment but my determination and focus gives me the strength to continue.

Achy feet!

Achy feet!

Lizzie: What is your philosophy and how does it relate to your journey?

Pierce: My philosophy: One Life, Embrace It. I think this probably is evident in my journey.

Kirsty: I am loving every minute of your journey, I love the photographs, and the way that you write. Through your words I am there, absorbing your surroundings, I can see the conversations, the smiles and crinkly eyes. I love Josephine, Calv, the stick, and the horse shoe. Which part or parts are your favourite/s so far?

Pierce: The journey as a whole has been wonderful, each moment is unique in itself. I don’t have a particular favourite. I am overwhelmed by the kindness, the people I have met and stories I have learnt. The beauty of Nature. I will say this: I am glad I broke out my systematic life to experience all the incredible moments. We can all do it, we just need to learn not to fear.

Kirsty: Paul and Andrea, they are an interesting couple and I loved reading about them and of showers in the rain. Here is a cheeky question – have you showered in the rain yet?!

Pierce: I haven’t experienced a shower in the rain yet however if it rains on this journey again at some point, I will put myself out there and do it, after all I don’t get many opportunities to shower on this journey.

Kirsty: Thank you!

Pierce: Thank you for your continued support I really appreciate it.

You can read all about Pierce’s journey on his blog which he updates daily. Next week we will be contacting Pierce again to see how he is getting along, to ask more questions to bring you “Part 2”. If you have any questions that you would like us to ask please feel free to ask us on here or on our Facebook group.

Thank you for reading and have a lovely weekend wherever you may be 🙂

– Kirsty Vessey

(For part 2, click here to read)

– Kirsty McMullan.

Silence Is Not Oh So Quiet by Daniel McManus

I woke up one fateful Saturday morning the 14th of February to find an unexpected parcel sitting at the bottom of the front door. Rubbing my eyes, I trundled towards it and picked it up. As soon as I recognised the handwriting, I gasped and immediately took it to the living room and placed it in front of me on a low coffee table. Knowing what it is, I looked at it for a moment then took a deep breath and gently ripped it apart. After almost four months of tinnitus hell, I thought, at last! After I’d opened the parcel, I took the transparent object and connected it to the tiny equipment, inserted a small, silver circular battery inside the equipment and put it in my left ear.

Then I switched it on.

Suddenly, I was inundated with various sounds I hadn’t heard since November when I had lost my last hearing aid during a drunken shenanigan at a nightclub: the humming of traffic from the outside, the dialogues on television… The experience was simply indescribable. It was as though I had heard sounds for the first time in my life and it was almost impossible to conceive. Four months of silence was long enough for me to actually forget what certain noises had sounded like. I had even forgotten what my own voice had sounded like so when I heard myself speak for the first time in four months I was taken aback. ‘This is my voice?!’ I thought. I used to hate it! Now it doesn’t sound so bad! Oh, how I’ve missed sounds so much and I wanted to hear everything again, so the first thing I did was open the violin case and lift out the most sentimental item in my life – the only solace whenever I’m down. You seriously have no idea what it feels like to hear something you have a passion for again. I turned to YouTube and CDs to listen to a variety of music for a couple of hours just totally enjoying myself. I felt like the happiest person alive.

Then something hit me. I quickly ran to get my phone from my bedroom and flicked through the video clips. I stopped when I saw my baby niece. I sat down and played the clip I had recorded during my home visit last month. My eyes instantly filled with tears and I had a lump in my throat as I watched the clip and heard her gurgle playfully for the very first time in my life…

So, I guess this is what people mean when they say they cannot live without sounds – the voices of their loved ones and music in particular, the rain patting gently on the windows, the rhythmic thumps of a train as it slowly passes by, the roar of the thunder. For me, I’ve learned that you would have to go through a certain period of time without hearing anything at all to know what it truly is like and to completely understand why some things in life are so precious.

Silence but not really silence because the water is gently rippling and the breeze is whispering in your ears

Silence but not really silence because the water is gently rippling and the breeze is whispering in our ears

As I have been deaf since birth perpetual silence is something that is naturally all too easy for me to conceive. However, having been exposed to the very first sounds at a very young age meant I immediately became dependent upon them as I grew up. The fact is that the past four months have been the longest I’ve ever gone through without hearing anything at all. At first, I was naturally indifferent but as days turned into months I started to miss things I enjoy hearing more and more. I also had to broaden my visual awareness and peripheral vision to compensate for the lack of hearing and it wasn’t easy. There has been a few incidents where I was almost hit by cars because my eyes just simply got tired of constantly watching. You have to bear in mind that as a deaf person, I use my eyes all the time to communicate: reading sign language, lip-reading, which is an exhausting activity and can put a strain on your eyesight, looking out for strangers’ body language in situations where I would not hear public announcements (on the Tube for example) in case of unexpected changes, and so on. At the end of every single day, my eyes just wanted to sleep.

Further to this, I inevitably developed a life-draining condition – tinnitus: those annoying, incessant sounds of ringing, whistling and buzzing inside your head that drive you insane because they just never stop. Apparently, your brain is so used to hearing natural sounds that when you stop hearing them your brain, starved of sounds, starts to replace the absence of real sounds with ‘noises’ fed off by the tinnitus. So the perpetual silence is constantly blighted by those unpleasant ‘noises’.

So, you can imagine my utter joy upon the revelation that the four months of tinnitus hell was about to end when I finally put in my hearing aid, and I let out a long breath of relief.

After almost half a day of indulging myself in music, I stopped to take a break and sat down again. I smiled as I read my mother’s letter that came with the parcel because of her wise, motherly advice: “Now, look after it, son!”

And no doubt I intend to.

By Daniel McManus.

Carpe diem – Every day x

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One rather hazy summer, during the cool comforts of the night I was disturbed by a pin pricking sensation from within, in my stomach. I turned myself over in search of a cooler spot to try and return to my favourite place, a world of silence mentally and emotionally – Sleep. This sensation continued for a few days, even though I was not exhibiting any other symptoms I decided to grace the GP with the pleasure of my company, a visit to say “Hi” and for my peace of mind, for my children’s sake.

The GP turned out to be a locum who I had met a few times previously. I explained despite my deafness as best as I could, what was bothering me. “Hmmmm” She said, doing a check on my stomach. “You need to have an ultrasound scan which I will send off right now, for you.” I looked at her in wonder and accepted her decision without question.

I had to wait, for a phone call?! They (who would be doing the scan) would be contacting me to make an appointment. Feeling unnecessarily stressed, at the thought alone of a phone call since I cannot answer it or make the appointment myself, being profoundly deaf from birth. I have never been able to decide whether to be amused or perplexed at phone calls requiring my immediate attention so I usually end up combining the two, especially when they know I am deaf.

Damn…. The referral form for the scan was not accepted apparently due to some errors on it so the GP had to refer me once again. This was two weeks later from the date I last saw them. Quite spontaneously, I spotted my husband looking at the calendar, talking hesitantly…. I had hoped he wasn’t talking to himself! Too many times I had spied lone passer by’s talking and I do a double take out of care to make sure they were not vulnerable…. Only to realise short moments later, they were holding a conversation over their mobile phone. Relief overcame me finally finding out I had an appointment for a scan. I was still feeling that niggling pain and it started to prey on my mind, just a tad.

The scan date was not for another week but waking up to each brand new dawn, I anticipated it that bit more. To finally know the cause of this mysterious symptom which was starting to make me feel just a little bit nauseous. As one would say, “Patience is a virtue” and I have a lot of patience for only those that deserve it.

The nurse prodded and scanned me relentlessly with her probe, for an hour and a half. Escaping the room, only to return with her colleague in tow for a second opinion. By then, the atmosphere had turned ominous. The look on my husband’s face was one of concern. We tried in vain to hide this emotion from our children, pretending it was natural to have a scan, for so long. The nurse looked at me and said, “Your doctor will phone you within the next few days.” Another phone call?! I decided not to let these phone calls get the better of me as it seemed somewhat trivial compared to my health. Even though I felt physically fine and looked extremely healthy, I knew I was becoming seriously unwell. I have on occasion been blessed with premonitions and instincts so I started silently mentally preparing myself to embark onto a solo ride.

That night I ended up in A&E due to a bout of bad pains that was slowly subsiding… the emergency doctor there put it down to ‘Ovarian Cysts’. Which I was rather dubious of but she was qualified so she must have known what she was doing? The kids enjoyed the late night outing nonetheless.

A few days passed by slowly yet still no phone call came. Thoughts were trying to creep into our minds so in order to take a break from being on standby, we decided to take the kids to enjoy the wondrous weather and Mother Nature in our local park. Yes, you guessed it – we missed the phone call?! Sod’s law at its best. Fate works in mysterious ways. I was invited back to see my usual doctor and could I come in as soon as possible? Relatively, an appointment was made. “You have a mass in your stomach and you need to go down to A&E – now!”… Looking serious at me with such concern. “Okay” I reluctantly agreed… Wondering what this next part of the ride would consist of. You can’t stop the waves but you can learn to surf. Hence, going with the flow suits me so. Once again, I had to go with the flow.

Walking home cautiously, wondering what to say to my husband as a potential immediate holiday overseas to attend a family wedding was in the pipelines.

Honesty is the best policy. “I have to go to A&E now, they are expecting me” I told him sincerely. The GP had phoned ahead to let them know I was on my way. She had chosen this hospital for a good reason – they had at present one of the best oncology departments.

Another ride out for the kids once again oblivious to our worry and deep in thoughts. Innocent with their childlike ways. I did not have to wait very long at all in the reception area, I was ushered onto a bed and incessant questions were asked. treating me as if I was a pin cushion because they could not find a vein which had become the norm for me. I explained how one night I had this surreal experience of my chest turning ice cold, I could not breathe or feel my chest. I decided to lay upon the sofa and stay calm, riding it through. What must have been only thirty seconds felt like never ending minutes. Suddenly, much to my relief, I felt my chest resume beating away and myself breathing again…. Which had scarily happened twice on separate occasions. This seemed to give the nurses some more cause for concern. They immediately wired me up, monitoring my heart beat and at once, admitted me onto a ward.

The time came to bid my children goodnight as I had to remain on the ward while they returned to the comforts of their home. I hate goodbyes and this was one of the hardest goodbyes I have ever had to endure. The look on their sweet angelic faces as they turned away to leave was imprinted on my mind the rest of the night – It is still imprinted to this day which breaks my heart.

However, I had to fast with each day I remained as I was on the emergency waiting list for a CAT scan. Yet again, a few days more had passed before my turn under the CAT scan came…. To that date, it was a total of almost five weeks since I first presented myself with what I thought was a tiny, simple, trivial symptom. My instincts had informed me otherwise.

My consent was needed for them to carry out an operation the very next day, “to investigate” the cause. To observe with their own eyes what the mass was. I willingly gave them my autograph, for free.

Overnight, I felt endless chills and asked for extra blankets. This was early August so the nurses started monitoring me. Were they not telling me the whole story? I pondered.

More fasting as it was now operation day. I would finally know the cause for certain and hoped to be put onto the road of recovery. To be reunited with my children. I had been contemplating discharging myself and going home as I could not bear the children visiting me each day only to say goodbye but thankfully, I decided not to listen to that call for emotional peace.

Extreme nausea overcame me and I rapidly deteriorated, severely vomiting green liquid numerous times. The dividing screens were slowly draped around my bed and a dutiful nurse stayed by my side. Taking my temperature every so often and passing me the sick bowls. My husband arrived with the children only to take one look at me before his face dropped with worry. My skin had turned grey, my eyes were sunken…. I was drifting in and out of sleep due to the sickness and anti-nausea medication. I did not want my children’s last memories of me to be ones being in this state so I asked him to take them out, treat them to a meal and have some fun. Which he obliged to and during the meal, my son’s milk tooth finally fell out – biting a burger! They thoughtfully sent a media message to show me his new smile which relatively made my heart smile.

Sporting brand new hospital wristbands, the nurse noticed the matching dates on it. She looked at me with such kindness and exclaimed “Happy birthday!” I managed a smile back albeit weakly to thank her. There stood a porter at the end of my bed, waiting to whisk me away to the very top floor of the building, the fifteenth floor I think it was. I envisaged myself going to a ball in the penthouse suite. “Happy birthday!” someone else exclaimed after examining my wristbands to make sure I was their correct patient. I smiled weakly once more, to express my acknowledgement and gratitude. Pausing outside the “penthouse suite” my heart started to frantically thump away, my mind wanted to travel everywhere. I sternly told myself to remain calm and that “What will be, will be, I will survive if I am meant to” and mentally said my goodbyes to everyone I loved, there and then before slipping away into a void of darkness.

Sensing systematic lights were passing by overhead, I was groggily beginning to wake up and realising I successfully made it through. I was being trolleyed to another ward, trying to make sense of what had happened from the dressings and drains on/in my stomach. Endless tubes seemed to be everywhere. I feebly asked the attending nurse “What happened?” She responded “You had a ruptured appendix… The doctor will come and see you very soon.” Reassuring me I was in safe hands. I felt secure enough to drift off into a world of my own, to sleep.

The doctor’s face when he visited me relatively soon after I woke up, was a sign of relief. He was extremely worried that I would not survive as I should not have done. It is only because I was young, healthy, did not consume alcohol or smoke that my body did its job fighting the already ruptured appendix and internal abscesses it caused. My body had sealed it off; my entire stomach had stuck together which gave the doctors one hell of a cleaning job to do and it turned out to be one that took them quite some time. He told me whilst tapping the wooden bed table “You are extremely lucky.” Words seemed to fail him but I got the gist. For them, I was the centre of attention but I was too ill to know it. Naturally, I thanked them all for their help yet words too would not suffice my expressions of gratitude.

This confirmed how high my pain threshold was. No pain no gain?!

carpe diem photo2

If it had not been for modern medicine and professionals, I most certainly would not be around today to watch my beautiful children grow up into content, richly educated in life, adults. The emergency operation fatefully done on my birthday, some may say would add insult to injury but not for me. It gave me a second chance, a rebirth. Since experiencing a further two close calls within the subsequent year, I now cherish each and everything in my life. The warmth of the sun, the drops of refreshing rain upon my face, the tastes I sense, the laughter which is music to my eyes and ears… To put it simply, the beauty of it all. Life is too short and I for one know just how short it can be. Despite this, I observe many more people being ungrateful, being trivial, being petty, and being negative. This only frustrates me even more so and then some. I have learnt to try and put them aside until the appropriate moment arises to try and open their eyes, in order to educate regarding priorities, importance and positivity. Unfortunately, some people will never learn.

With each birthday that passes me by, I annually extend my gratitude to the doctors and nurses who gave me the best birthday present ever one could ask for. A second chance at life. Thank you.

I intend to make the most of my second chance so “Thank you” in advance, to each and every one of you, my family and my friends – for putting up with me.

Carpe diem – Every day x

~ SJ (Sara Jae)

(Photo1 – a birthday present which I seized last birthday for myself, my motto “Carpe diem” tattooed for posterity as is this blog

Photo 2 – flowers and a home made get well card from the kids and my husband)