Frank

Frank!

I realise I haven’t written anything for some time largely due to writers block – I’ve scribbled down some notes here and there but nothing that would merit a full post until now.

What follows is a frank, open and honest account of a recent event in my life. An event that I am utterly ashamed of, something that only people extremely close to me know of.

You might be wondering why I have decided to share this with the world – I’m sharing in the hope that it will help people avoid these events in their own lives. It will give you an opportunity to help me raise awareness and hope that together we can fix a system that in my opinion is failing.

It all started on Friday 11th April 2014 in the early morning – apparently I was sleep walking around the house. I often sleep walk – usually after a night on the town and in the morning I’m not where I went to sleep. I’m either in another room, in the bathroom on the floor, outside somewhere or naked in a hotel corridor. Monika woke me up to ask what I was doing and this is where the madness began. From that moment on I had no idea what I was doing and now a few weeks on I only see flash backs of a terrible ordeal.

Whatever I was doing or whatever Monika said to me triggered a rage deep within, a rage that I was unable to mentally & physically control. I severely lost it! I rampaged around the house shouting and screaming like a man possessed. I trashed the clothes horse in the hallway, I ripped the light from the wall, I kicked a massive hole in the side of the bookcase, I threw a chair out on the balcony, I smashed a dining room chair to pieces, I smashed several storage boxes to pieces, I threw clothes, I threw objects that were lying around the house and then… I tried to end my life.

I’ve suffered from testosterone-fuelled rages before and I’ve even written about them on this blog – this one was different – this time I was not in control!

I’m not sure if I had properly woken up or if I was still in a state of sleep as I was acting confused and saying (shouting) the most ridiculous things to Monika. I have read online about people with Klinefelter’s Syndrome suffering from parasomnia, which is the medical word for sleep disorders.

I’m only sat here today because of the valiant efforts of Monika to keep me alive during my uncontrollable rage. They say when your life or the life of someone that you really care for is in danger that often a super-human power / guardian angel can take over and help out in the most unlikely situations especially when it’s not your time to go. Monika managed to stop me from taking a knife to myself in the kitchen and then subsequently when I had failed she stopped me from jumping off our balcony (6th floor) to the ground.

For the past 12 or so days I have not slept properly since it happened – I keep having flash backs and when I do dream I hear her crying for help.

I’m not sure how long Monika was crying out for before our neighbours got involved. They must have heard the shouting from me & the screaming from Monika and called to see if we were okay.

Fortunately our neighbours have a key to our flat and were able to let themselves in. They were obviously concerned and called 999 – I was on the floor in an incoherent state and Monika was physically stopping me from going anywhere.

I have no recollection of the time that had gone by – I was apparently still raging, frustrated and desperately trying to end my life.

I have vague pictures in my head of paramedics being present accompanied by police officers. Upon arrival they were trying to make contact with me and suspected that I had taken drugs the night before and this was a bad reaction to the drugs.

For the record I do not take drugs other than what has been prescribed to me for the Klinefelter’s Syndrome. I don’t smoke and I have the occasional drink – the night before I was at an awards ceremony with work and I admit I had too much to drink.

The paramedics and police were unable to make contact with me at the flat and relieved Monika so that they could ask her what happened. Apparently at this time I managed to break free and had another attempt to get to the balcony. This time it was met with brute force and I was immediately handcuffed and put into a restraint by the police. I fought with them for about 5 minutes before they were able to get me under control it took a few of them to hold me down – I was apparently still raging at this time.

They made a decision to take me to hospital and the police sectioned me under 136 the mental health act due to my state of mind with the intention of getting me urgent medical care. I was not being arrested, as I had not committed any crime. Even though I did attack the police officers and due to the fact that clearly I was not my usual self they decided at their discretion not to press charges. I have no memory of them being there, what I said to them, how I acted, leaving the flat kicking, screaming, shouting and raging still.

The police decided that the ambulance take me to the nearby Homerton Hospital that has a special ‘136’ unit to deal with mental health issues. Upon arrival they rejected me as a patient and referred me to the standard A&E where a member of their staff would assess me.

I remember receiving a cup of water through a straw and having people prod me and ask questions in the hospital. I remember a doctor asking me if I was going to behave as I was handcuffed to the bed semi-naked. The doctor wanted to check the injuries that I had that were due to me being removed by force from my home earlier. I remember him asking me if I had taken any drugs as they could see a crystalline substance around my nose. It was probably crusty snot & tears following my earlier outburst.

The below is my discharge form from A&E – I have removed names to protect those who were involved apart from my own.

Homerton Hospital

After about an hour I came around and slowly started to realise what I had done. I have never felt so ashamed in all my life – not remembering what happened made it worse and even now the flash backs haunt me. My initial question to a teary eyed Monika was did I hurt her in anyway and thankfully I did not. The police officers then visited me as they were not able to leave the hospital until the consultant from the 136 unit had assessed me. They started to fill me in on my actions and I felt a strong feeling of remorse and I was very apologetic towards them. I thanked them for their actions and decisions – it could have been a lot worse for me – I think they did want me to get help and not intentionally be heavy handed with me.

Moments later the consultant came to visit me – he told me that he wanted to spend 30 minutes talking to me on my own and then some time to talk to Monika and me and then talk to the police.

For the first time since the diagnosis of the Klinefelter’s Syndrome I’m actually (spookily) talking to someone who is a) aware of it & b) understands the how a person with it can behave in a way similar to the events that took place.

These are some of the things we talked about and it felt good to talk;

  • My childhood & my family
  • My father passing away – his cancer and how it’s apparent that I’m not quite over it yet.
  • Previous relationships that ended badly.
  • Drugs – I reaffirmed that I am not into that scene
  • Alcohol – there was a time following my initial diagnosis I turned to alcohol to solve my problems – not a good idea
  • Sleep disorders
  • The system for identifying Klinefelters Syndrome
  • Klinefelter’s Syndrome in general > support, medication and lack of information
  • Infertility
  • Monika

The consultant came to the conclusion that various things in my life had been building up and that this outburst was related to that. Clearly mixing a large volume of alcohol and testosterone played a part & he was concerned that my medication should be closely monitored and regulated during the year. We discussed my sleepwalking and he agreed there is an issue to be addressed and he would refer me to a specialised sleep disorder clinic. In terms of my general state of mind he did not seem concerned at all – which is a positive.

We spoke at length about the Klinefelter’s Syndrome and how I feel about it – I mentioned to him about my blog and I suspect that he will be reading this post, no doubt he will add comments if I have missed anything out.

We then spoke at length about infertility – out of all the symptoms related to the syndrome this is the hardest one of all for me to bare. I get bogged down when I see friends get excited about their new family and wish everyday it would be an easy process for me to have children. We talked about the exploratory operation to find sperm and the cost implications of this. We then talked about the cost implications of having children by sperm donors and the effects that would have upon our lives.

We then spoke about Monika. Monika is my rock, she is my one true love and without her I would not be here today. I have never met anyone who has supported me through life’s twists and turns as much as she has done – even now, a few weeks on from this event she is still proud to stand by my side – continue to love me for who I am and wants to be my wife. In addition is willing to do whatever it takes to have a family with me, even if that is through exploration, donor sperm or adoption. I am very lucky to have this level of support in my life and I know that now more than ever before.

Following our chat the consultant recommended reading a self-help book whilst he made the necessary arrangements for specialist genetic counselling for me, something that I desperately need. The book is called ‘The Feeling Good Handbook by Dr. David D Burns’ – it’s about £9 on Amazon.co.uk and is the best £9 I have ever spent. The first few chapters are a bit wordy but stick with it and it will teach you some amazing techniques for how to avoid situations like I have described above.

I mentioned at the beginning about a failed system that together we can fix. I know that there are a lot of people out there who are not keen on discussing Klinefelter’s Syndrome and I understand that. However we can together drive awareness and we can improve how the system deals with adults who have found out about the condition later on in life. Modern technology makes it possible to screen for genetic defects before a child is born which gives new parents a chance to get support for their children early on.

The health service does not offer the same support for adults who have just found out about this condition later on in life and you are left to find out information / help yourself.

Next week I am taking annual leave from work. On Monday I will be printing out this letter and sending it to local / national MP’s and health organisations with the intention of them a) watching my video b) making them aware of the support that adults need.

I know that many of you reading this have various connections in media, politics or working in the health service. I would encourage you to print this letter off wherever you are in the world and help me raise awareness so that we all benefit from a better service. It would mean a lot to me and to the others who are unable to come forward. I would also encourage you to share this blog post – and the video I produced http://bit.ly/47xxy it took a lot of courage for me to share my story with the world and I’ll continue to do so with the hope that others will benefit from reading this.

On a side note – something you may not know, is that if you are ever feeling down, you can always go to the A&E department of any hospital and ask to speak to a psychiatrist for obvious reasons. They will see you and they will help you – like they helped me. If you want someone to talk to you can always call the Samaritans 24 hours a day, 365 days a year – I admire their work and recently I have called them to help me get through what has been an immensely tough time.

Mistakes are always forgivable, if one has the courage to admit them.
– Bruce Lee

3 thoughts on “Frank!”

  1. You are an incredibly mature guy, Dan. This site is the best site on the web to learn what it is like to live with KS.

  2. This is a great site. Thanks for sharing your story. I was just diagnosed at 50. It’s been a roller coaster of emotions. It’s like a bad dream.

  3. I really am in awe of your openness and effort to make awareness. I’ve enjoyed reading your posts, it’s been educational for me.
    Even though I’m not or know of anyone affiliated with the syndrome at all, your story has touched me and I will share this new found information. Thanks Dan.

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