Becoming vulnerable

My recent bereavement counselling session highlighted that I have a tendency to talk about events in a way that doesn't reveal the true depth of the emotions that I was experiencing. I've built up walls, or surrounded myself with a suit of armour as a way to avoid being vulnerable.

Although that can be a good thing, it can also mean that when things get really bad, I don't have ways, and don't allow myself, to reach out; to allow myself to be vulernable; to get the help I need. Instead I let things get progressively worse until I reach the point where all I can see is suicide as a way out and then reach out to get help.

Not a good situation to be in because one of these days I won't reach out and, well you can guess the end result...

So why can't I allow myself to be vulnerable, why can't I take off the armour? How do I change that?

For me being vulnerable, opening myself up to people is an incredibly scary thing to do. It means opening myself up to the possibility of hurt and pain, and that is something I find difficult.

In the past I've allowed myself to let people get close to me. I've let my barriers down and they've let me down. The loss of trust is bad enough but the fact that I've opened myself up, let myself be vulnerable, shared parts of me with people; only to find those parts rejected or to find that people were dealing with those parts by treating things as a game. That leaves scars and makes you build up the walls more securely.

Rhys broke through those walls the moment I first set eyes on him. He was my life, he filled my world with love, fun and laughter. Watching what he went through during his life, seeing him in pain, sick, unable to eat, everything that the Leukaemia and tumours inflicted on him, that hurt so much.

It also strengthened the walls I'd built up because I needed to hide that hurt away. I needed to block it off so that I could focus all my strength on Rhys and Tracey. I needed to make sure that they were able to get through everything, and the only way I could do that was to become the rock that anchored us all no matter what. To be the calm in the storm.

From the first moment I knew that there was a chance of Rhys dying I had to hide that knowledge away. I kept that possibility from Tracey and Rhys until we eventually found out for definite that there was nothing further the doctors could do for him and he was given the terminal diagnosis.

Finding out that he was going to die broke through the barriers I had put up and I found myself crying on so many occasions, but the barriers were still there. I kept my tears to myself as much as I could, crying in the car or the shower, or when I was with the hospice nurses and Tracey and Rhys weren't with me.

Today, one of the journals I fill in each day asked the question, "What makes 'me' me"?

In the past I could have reeled off a list of thing. I'm a parent, I'm a triathlete, I'm a burlesque dancer, a photographer, spouse, aunty, so many different things. I'm still most of those but they are things I do, people I'm related to, and they all go towards to describing me, but they aren't necessarily 'me'.

Photoshoot at Clifton Photographic

Crossing the line with Rhys at Outlaw Half: Nottingham

Chilling the day before the Bala Middle Distance

Photoshoot at Khandie Photography

Photoshoot at Khandie Photography

I could take up different hobbies and people would describe me by those, but the core of who I, what makes me 'me', that wouldn't change.With the loss of Rhys I'm faced with figuring out who I actually am, and that is scary because I don't know if I'll like the answer, but I have to work it out.

Finding out who I am means opening myself up, taking down the walls, or as my counsellor suggested "at least making a door in them". It means becoming vulnerable and that is something that I don't know how to do.

For some time I've been following Brene Brown on Facebook. Last week I bought two of her books. I'm reading the first, "Daring Greatly". As I read it I hope I'll find ideas for how to be more open, more vulnerable, and to take the first steps on that journey to discover who I really am, now that Rhys has died.

Who was Rhys? Part 2

I recently found a USB flash drive with some things that Rhys had produced while at school. There was something that he'd written in 2007 which is a good place to start the next bit of his story.

The Day I Surprised My Dad And Mum

Two years ago on my Mum’s birthday I surprised my mum and dad by having Leukaemia. I went into hospital on the Tuesday with mum and dad and we saw the doctor, she said you will have to go up to Bristol for medicine to make you better.

Then on the Wednesday we went up to Bristol in an ambulance. The ambulance went the wrong way but my dad kept to the path. when we got there I went up to ward 34 and they put me on a bed.

What was a bigger surprise was they kept me in for 6 months. 

In 2003 Rhys finished treatment for his Acute Lymphoblastic Leukaemia. Life could get back to the sort of normality that lots of other families enjoy.

Rhys was enjoying primary school and we were enjoying a life that didn't revolve around hospitals. 

We had 18 months of that before Rhys started complaining that his arm hurt. We weren't overly concerned at the time but asked the medical team at the hospital that had looked after him if it was possible to get him checked over. Tests were performed and before we knew it we were being told that he had relapsed and the A.L.L was back.    

                                       

As Rhys described we found ourselves heading to Bristol once more. This time our stay was a lot longer because the doctors decided that they wanted to give him a more aggressive treatment, and the best way to do that was for him to spend the time in Bristol because he would be having cranial radiotherapy in addition to chemotherapy.

We were lucky because we were able to get a room at CLIC House, which is about 15 to 20 minutes walk from the Children's Hospital. At one point we found ourselves using the flat attached to the house. It was during that time Rhys first raised the possibility of dying.

No parent wants to think that their child is going to die before them, no parent ever should have to have those thoughts. Neither should a parent have to have a conversation with their child about why they think they might die. I found myself having that conversation with Rhys one weekend when I was staying with him.

It was a short conversation because Rhys' response to my asking him why he thought he might die, had someone said something to him for instance,  was "I don't know, it just popped in to my head".

Not wanting him to fixate on the idea we quietly left the subject drop and it was never raised again, at least not for another 12 years.

The 6 month stay finally ended in December 2005, allowing us enough time to pack everything up in Bristol and head home for Christmas.

The treatment protocol at the time for boys that had relapsed was two years of treatment so we once again found ourselves in the routine of daily medication regular blood tests, and those all important visits to the hospital, whether for check-ups, lumber punctures or short stays while the doctors pumped Rhys full of anti-biotics and other drugs to combat whatever infection or illness he'd picked up.

In 2007 we reached the two year milestone and treatment once again ended, but life wasn't to return to normal.

Within months of having completed treatment Rhys was having excruciating headaches. He would sometimes go to bed at night with  headache and wake up the following morning with the same one or another one. Some mornings they were so bad he couldn't get out of bed and we just had to leave him go back to sleep, ringing the school to inform them that he wouldn't be in.

Over the following months we explored every route to try and figure out what was causing the headaches. We went to the optician to have his eyes tested. We had appointments at the hospital ophthalmology department but this didn't show anything. Eventually his consultant in Bristol suggested a lumbar puncture for completeness, because the chances of it being the Leukaemia were incredibly slim due to the length of time since he'd finished treatment.

A trip to Bristol followed and Rhys underwent yet another lumbar puncture.

It wasn't long before we were back in Bristol to hear the results and they weren't what we wanted to hear. Rhys had relapsed once again.

His consultant explained to us that there were only two options, either he underwent a bone marrow transplant or we went home and it would just be a matter of time before the cancer claimed him. We did what any parent would do and choose the option that gave him a fighting chance, not a huge one. As we were told at the time, Rhys was unique. He had Neurofibromatosis. He had A.L.L, and was about to embark on his third batch of treatment. The hospital had not dealt with another child with that same history.  Rhys' chances of survival were around 20%.

From May until September of 2008 Rhys and us found ourselves in Bristol on the Bone Marrow Unit while his body was battered with radiotherapy and chemotherapy to destroy his bone marrow before it was allowed to rebuild itself thanks to bone marrow from a anonymous woman donor from the USA.

I won't describe that time in detail here because I wrote about it extensively at the time on a blog we set up for that specific purpose. That blog can be found here.

Who was Rhys?

With a blog called Surviving Rhys I should explain who he was.

Ieuan Rhys Powell, to give him his full name but everyone called him by his middle name because it was easier to say, was born on the 7th January 1998 at 12:16pm in Yeovil Maternity Hospital.

He weighed 7lb 14oz on arrival and was a decent 55cm in length, with a head circumference of 33.3cm. I still have all these little details written down.

Rhys was about a month premature because his Mum (see footnote below) had been suffering from pre-eclampsyia, which had meant a number of stays in hospital during the previous weeks. Fortunately we weren't in hospital on Christmas Day, but Boxing Day ended up being another matter, as did New Year's Eve.

After he was born, Rhys spent the first days of his life in the baby Intensive Care Unit before spending a few weeks in the flat on the maternity ward. A time that still brings back memories of nurses knocking on the door and asking what was cooking because it smelled delicious, it was a casserole, and, on another occasion, trying to walk the length of the ward while hiding wet jeans due to a nappy failure while he was sitting on my lap.

With that start in life it was no surprise that he was going to make our lives interesting.

Between his first Christmas and New Year, he developed a case of bronchitis, which resulted in us making a visit to the hospital in Cheltenham to get him checked over. We'd been staying with my in-laws in the Cotswolds at the time and were heading to Wales to stay with my parents over New Year.

In the summer of 2000, Rhys was diagnosed with Acute Lymphoblastic Leukaemia (ALL).

A few months before he was diagnosed we had gone away for the weekend to a wedding, leaving Rhys with my parents. The week after I was away on a training course and received a phone call from his Mum to say that he'd been limping and didn't want to walk, just wanted to be carried. They were taking him to the doctors.

The doctor suggested that he might have pulled a muscle or something similar and it wasn't unusual, if it didn't improve in a few days then they should take him back so they could take another look at him.Within a couple of days he was OK again.

In July, his legs hurt and we took him to the doctors who suggested that we monitor him and if it got worse take him to the hospital. That same evening we were in A&E waiting to see a paediatrician.

When she eventually arrvied we talked and she told us that she didn't like the colour on him, he was far too pale compared to his Mum and I, and she wanted to do some blood tests. We could either go home and come back in the following day, or she could admit him and they could do the blood tests on the children's ward that evening. We opted for the latter.

Once was safely on the ward in bed, and bloods had been taken, I left him and his Mum and went home.

Back then we had dial up Internet at home, which meant that when you were using it people couldn't phone you. At around midnight, the front door burst open and Rhys' Mum came in. I was needed back at the hospital because the blood results had come back and the paediatric consultant on duty wanted to talk to us about them.

Throwing on some clothes, we headed back to the hospital and shortly were sat in a room with the consultant who told us that Rhys had ALL. The shock was so much that it was all I could do to stop myself from laughing.

The doctor explained about the disease and what the immediate plan of action was. Rhys would be tranferred by ambulance to cancer ward at Bristol Children's Hospital.

Waiting until Rhys was being taken to the ambulance, I headed home and packed some bags for a few days, then drove up to Bristol and the hospital; arrving just as the ambulance crew were leaving.

The next couple of weeks were a whirlwind as Rhys began treatment and we tried to arrange for him to be transferred back to Yeovil where his treatment could be continued by the doctors and nurses there, under the supervision of the team at Bristol.

There were memorable times for him while staying in Bristol during those early days.

We saw the hot air balloons flying passed early morning when they took off from the balloon fiesta.

Rhys was allowed out of hospital and went to the zoo.

Months of intensive treatment followed before Rhys was deemed to be in remission and was switched to the maintenance treatment that would last for the next three years.

In 2003, Rhys finally came off treatment and our family life could get back to something that resembled other people's.

But the story doesn't end there and I'll continue with what happened next in another post.


Footnote:
I've mentioned Rhys' Mum in the post, by that I mean his biological mum, the person that gave birth to him and spent the majority of the time at hospital with him. Throughout his life I was the main bread winner and so had to go to work. Even so, when he was in hospital in Yeovil I spent as much time as I could, when not working, at the hospital with him.

When he was having treatment in Bristol  for extended periods and I couldn't be there with him because I had to work I would drive him and his Mum to Bristol, drive up and back during the week to visit overnight, and then go back up to pick them up at the end of the week, either to stay the weekend or to bring them home for the weekend.

Introduction

On September 11th 2017 my world came crashing down.
The journey that started on the 7th January 1998, and took a turn for the worst in the summer of 2000 finally came to and end, and a new one began.

On that day in September my son, Rhys, passed away quietly at St Margaret's Hospice in Yeovil. He was only 19.

Next Monday would have been his 21st birthday.

The last year has been far from easy for any of us. For me, well I lost my wingman and although I tried to cope, I was just a hair's breath from crashing, which I did both metaphorically and physically.

This blog is my way to explore both journeys in the hope that it will help me to make sense of things, as well as to work through some of the things that bereavement counselling is bringing up.

Happy 21st birthday Ieuan Rhys, my little man.

End of the Journey

I've been trying to write this post for a few days. This is actually the third version I've come up with.

Its been 7 years since I started this blog. In that time I've written a lot about my transition. That was the reason for starting it in the first place. To have somewhere that I could share my experience of transition, particularly through the UK NHS route. To share with people what transition can be like and to hopefully create something that people might come across and find useful.

During the time I've been posting I've enjoyed reading and responding to people's comments, I've also loved finding and reading other people's blogs and seeing their experiences. Through this blog I've made some lovely friends.

This blog has been about transition though and depending on my mood I see transition in one of two ways, a bit like light being waves and particles.

Sometimes I see transition as the point in time where we go from being the old self, that we showed to the world, to our true selves. For me that was the 9th January 2012 when I left my house and went to work for the first time as Jenna, as the real me.

At other times transition is where we move from being that same old self and go through a period of time where we learn how to be our true selves without hiding that person away, its a period of making mistakes and trying new things, its a time of learning to be a man or woman. It can be a time of joy, happiness and wonder.

It can also be a time of pain, heartache, a time of experiencing people who are ignorant or abusive; and for some its a time where they experience physical pain and injury, and far too often death.

The last few days I've been trying to write this post, in some ways I was spurred on by something Cass said in her post about the blogs that she used to read when she realised she had to transition. Today though something happened that made me realise that its time for me to finally put transition behind me.

I was talking with someone at work and during the course of the discussion we got onto operations and anaesthetics. As we were talking I found myself talking about some of the aspects of my surgery last summer. Nothing too detailed, stuff about anasesthetics, pre-meds, medication to help you sleep and needing to lie flat on my back for several days. I also mentioned the lovely liquid diet I had to ensure for the first few days.

This evening I came to the conclusion that that discussion was one that I really didn't need to have, I didn't need to share that information about what happened while I was in hospital with a colleague. That conversation clarified for me that my own transition has truly finished.

I have a few things I need to do, like electrolysis and sorting out my GRC, but my transition journey has finished. Come May this year I'll have been discharged from the GIC and as a result the only trips I'll make to Exeter will be to go shopping there or for other reasons, none of which should be for medical reasons.

Today I also managed to remember the password to my old Facebook account, which has been sitting around for the last 4 years even though I thought I'd asked for it to be deleted. Well in two weeks time it actually will be. Already the account doesn't show up if I search for it and doesn't appear in at least my son's friends list.

Life now revolves around my family and friends, burlesque (Mira will be performing in 5 shows this year but hopefully more), running and triathlons (still have a half marathon, two triathlons and the long course weekend planned for the next six months); and a newfound passion for photography (I'm doing a 10 week evening class which is proving to be interesting, especially as it will involve taking pictures using 35mm film and learning to develop it in a darkroom).

So this is going to be my last post on here. I have no plans to delete the blog. It continues to serve its purpose which is to provide anyone on a similar journey with something that may help them to realise that it is possible to be true to yourself and to live your true life.

The media has been full of articles about trans people, Jeremy Clarkson is the latest to cause a bit of a rucus while writing in the newspaper. The temptation is there to write things in response to things like that (although in Clarkson's case I think anything I'd write would be drowned out by the screams from angry statisticians who were mortified by his blatant abuse of statistics). Besides  people like Paris Lee and Jane Fae and so many others write far more eloquently than anything I could produce. The temptation is still there though and I might one day succumb to it and find a quiet corner of the blogosphere to put my jottings but that's not for now.

I'm not going to disappear completely though. I've had the support and friendship of others and so plan on doing what I can when the opportunity pops up to help others.

There are so many blogs that I'm following and I'll carry on commenting on them so you don't get rid of me that easily either. I'm also on Reddit and will post on any threads there where I think my experience will be useful.

The last 7 years have been interesting, they've been fun, and sad, and depressing, and joyful. Pick an emotion and you'll probably find it expressed somewhere in the 372 posts here.

The time has come after 7 years though to bring this journey to a close and to start a new one. A journey where I'm simply a not quite 50 year old woman, who has a trans history, and has a tendency to do nutty things like endurance sports and getting up in front of an audience and removing her clothes (some of them at least).

Thank you to each and every one of you that has followed my ramblings and provided support through your comments when I've needed it. Without each one of you then things would have been just that little bit harder.

And so to close I think I'll let the incredibly funny Dave Allen have the last words

"goodnight, thank you and may your God go with you"

You Look Great

Yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
It finally happened.

At least I think finally. To be sure I'd have to go back and read through all my posts on this blog.

Hmm!

I think we'll go with:

Yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
It finally happened.

Goodbye 2015

10 days into 2016 and I finally get around to writing my first post of the year.

Yesterday was the fourth anniversary of my going full time properly and returning to work as me, tomorrow it will be eight months since I stepped onto the train that would take me from home to Brighton and Tuesday will mark eight months since I corrected the physical defects that nature gave me.

2015 was a better year than 2014, but even so it was a mixed one.

I completed my latest marathon and actually managed to run all the way (apart from a tiny, tiny amount where I walked while I was taking on fluid at the drinks station). Having been on hormones for three years, and not having completed a marathon for even longer than that, I was pleased to just miss out on beating my personal best for the distance.

May, finally saw the culmination of a long journey with my GRS, and the beginning of a new one as I move on with my life and put behind me the need to have surgery to correct my genitals. The summer was an interesting one dealing with some of the problems that arose following the surgery. As much as it was a relief to have the surgery over with it was tinged with some sadness because Mum never got to see me reach that point and I never got to tell her what it felt like.

The rest of the year revolved around Rhys' surgeries to remove tumours from his stomach and head. For those that love what technology allows us to do this is what the surgeons used when planning out the operation to remove the brain tumour. A 3D printed skulll based on scans that had been taken of Rhys.

Indiana Jones and the Crystal Skull

In October and November I got to perform as part of the Burleskin troupe at Trixie Whipp's Halloween show in Puriton, Somerset and at a birthday party in Yeovil. My burlesque went from strength to strength in 2015 with not only those two performance opportunities but also beginning work on a new Christmas routine, one which I plan to have at a performance standard by next December, and also a new Doctor Who themed routine which is in the very early stages of development.

2016 is looking like it will be a good year. More performing in burlesque shows and finally getting back into racing with my local half marathon entered as well as sprint and middle distance triathlons and a weekend of races based on Ironman distance swimming, cycling and running.

I've been a bit under the weather so far which has had an effect on my training but I'm slowly getting over that so will hopefully be throwing myself back into training this week.

And finally, this week saw my son reach the jolly old age of 18 and being able to legally buy alcohol in pub, restauran, club or shop. Not that he would have tried to buy it illegally. We went out to celebrate his birthday and gave him the chance to buy his first alcoholic drinks. It was a complete failure as we must have gone to the only place that was out of anything that my wife will drink. Typical. I'm sure he'll eventually manage to buy some though.

Here's to 2016. Wishing everyone a wonderful and safe time.