Life as a love gangster

I’m literally typing into my laptop here with absolutely no plan whatsoever on what I’m going to write. I’m feeling grateful for things, as I often do. I love the fact I have everything in my life that I do and my daughter is happy and healthy. So I just fancied seeing what comes out when I start to write.

Sometimes it’s good to just do this. Not every blog of mine has an agenda. They’re just ramblings of a lunatic mostly.

I don’t feel much emotion.  It’s nice meeting new people and getting to know them, you learn a lot from people. And I think with each encounter in your life there’s always something you can learn from them and use to grow as a person.

A big symptom of brain injury is emotional numbness

I feel things when I’m looking after people at work, I think that’s a weird sort of love. I feel laughter, I feel sadness and anger. I feel good at the gym. I feel relaxation, I feel determination and passion. But I haven’t felt fear since my accident, which is peculiar to me. I don’t feel other’s considerations of me, hence why embarrassment has been largely absent.

I just read one of those picture quotes you see posted up on Facebook, I think that’s what prompted me to write a short blog tonight.

There’s nothing more important than to love and be loved.

That’s what I use everyday. Maybe that’s why I smile a lot, but there is so much to be thankful for. And to be in a position where I can make people smile who need it most, that is a real blessing. I love that and always will.

Love

Such a thrown about term. I mean it in the sense that I’m not sure you will understand, not even sure if I do. I love to look after people, I love to make people laugh, I love interacting with people, I love being part of something everyday. I love embarrassing myself to make others laugh, thats one of the big ones.

Life is what you make of it. I could sit here and express sadness over the fact my decree for divorce has had a court date set, but that my ongoing legal claim (4 years) has not had a court date set. My divorce paper reads:

It has been proved there is a breakdown in the marriage and the respondent (me) has been proved to demonstrate unreasonable behaviour leading to this.

My unreasonable behaviour….

… a change in personality due to severe head trauma. 

The ‘old’ Mikey…

….The ‘new’ Mikey….

Hey, no hard feelings. Honestly. I know I’m not to everyone’s taste and I was pretty great.

However, despite these two terms being thrown at me constantly over the past four years, some things will never change. The things that I like to think matter.

Over the years I’ve put so many strategies in place it’s just become a part of me, who I am.

From hiding my lisp and my poor memory by using humour when I’m tired,  to making a note of where I parked the car, using humour when I struggle with word finding to zoning out and going quiet when my head begins to torture me as a result of too much concentration, everyday I’ve implemented ways to try and live successfully with a brain injury. 

I currently have an essay due at the end of the month. I’ve been working hard on it, but yesterday I had a wake up call

Over the years, pain and discomfort have become so familiar to me that I have had to view them as my friends. Now I have gone the other way, physical pain is almost pleasurable to me.

Brain pain (copyright Whitehead 2016).

Yesterday evening, neuro-fatigue hit me as hard as a fat nurse hits the button for the vending machine after a night shift.

It felt as though someone had cut my head open and put razor blades inside and shook it like a snow globe

I have no memory retention during this time. If you were to tell me something it would be as though it didn’t happen!

Each step I took vibrates my head tenfold and it feels like it’s to explode. Each step is like a sledgehammer to my head. I have to start squinting because of the photosensitivity 

I caught a glimpse of myself in the mirror. Another classic symptom of mine is I go white as a sheet

Sickness arrives, then I start needing the toilet repeatedly for a number 2. I’ve only been sick twice though, I use strategies to prevent reaching that stage.

When I have a lot of things going on, I am susceptible to this. These symptoms are my brain’s way of telling me to slow down. ‘You’re doing too much essay writing’.

Imagine feeling this after a shift at work. Or after a busy day at uni. Then imagine you can’t remember where you parked. It’s raining and you’re feeling worse by the minute. Hopefully you can appreciate the importance of a parking permit so you can park nearby.

But I remember that it would be much harder doing all this from a wheelchair. I am so thankful for this you could never understand!

Essays are beyond hard for me. Sometimes it feels impossible, especially when my head feels as heavy as a boulder or I start to spin while trying to do my research.

I can feel my eyes start blurring and spinning when I concentrate on things for so long.

Perhaps that’s why my concentration levels are shit. It is, like everything else, a coping mechanism.

I live for the moment. I do stupid things, I laugh a lot and I take everything with a pinch of salt. I’m childish and I have the mentality of a child. Because I need that escapism from the other serious things going on in life.

There’s way too much seriousness in life. I’m not stupid, I know you need to be serious sometimes.

But I believe it is more important to laugh. Life is too short and way too serious for my liking

 

 

 

For clarification, legality and accountability purposes,  I want to note for the record that this blog is entirely fictitious. Any names or stories written are written in the first person purely for realism and to explain any symptoms someone with a brain injury may experience. Any events recorded, if similar to any actual real life circumstances, are purely coincidence. The purpose of this blog is to help other people with brain injuries gain confidence and to help them avoid any potential deterioration in their mental or physical health by offering up specialised and individual strategies  tailored to brain injury, with the aim of living a full and happy life whilst living with a brain condition.  

September 2016

As I was stood outside my flat late at night with my friend smoking a cigarette, my new neighbour who I had yet to meet walked past and said hello. We got to chatting, and as it had turned out my friend knew the new chap and they started to have a catch up. After she paused for breath, my new neighbour asked me what I did for a living.

Bearing in mind I was stood outside wearing only a vest with tattoos and far too much flesh on display, I replied..

“I’m a children’s nurse, just finishing my last year at uni”

“Very funny. Go on what do you really do?’

November 2015

After I had moved out of the home I shared with my wife and daughter, I had decided to rent a room to save myself time, as I had a placement due to start at university very shortly. It was decided between my wife and I to be a temporary arrangement, with the aim of me moving back in to the family home after enough time had passed for the contaminated dust to settle.

I received a text late one night whilst I was saying there

Just so you know, I have decided to make enquiries about buying you out the house. I think it’s the best thing and it will help me out a lot

April 2012

“Hey man! Did you enjoy the dolphin swim?”

“We did! But we’re the only ones on the coach, no more passengers?” We had gleefully proclaimed.

“Hey no worries guys, you’re VIP! We are just going to get some lunch, we haven’t eaten”

That’s strange. Lunch at 3pm? 

After a prolonged period of time that one could have consumed 1 lunch, 1 dinner and  2 afternoon tea’s in, they returned to take us back to the hotel.

“You guys ready.. let’s go!”

December 2015

“You want pizza? Here’s your fucking pizza. Eat it cold for all I fucking care”.

Then she just went for it. Punching, kicking, shouting and clawing – everything except biting.

I was in shock. These people had pretended to care about me. All along they had lied to use me and get something for themselves.

They rented the flat I was living in, they were benefit fraudsters, illegally subletting and taking advantage of me by charging me extortionate amounts of money for the rent.

But they hadn’t quite lost interest there, they tried to get me arrested, telling the police I had attacked her. When the attempt to get me arrested had failed, they tried to take something  else that is very important away from me.

Present day

I was sitting in a lecture at uni. I had just been coerced into going to the front of the room and acting out a scenario as a nurse dealing with a vulnerable child in a fictitious clinic of some sort.

I stood up, my head was spinning. My vision had been blurry for hours, my head was making me feel sick and I hadn’t been able to really eat much as a result.

As I got on with the job at hand, I was not really switched on. I couldn’t remember for a few minutes what the aim of the scenario was.  My cranial nerve meant I was lisping, so I was trying very hard to stop that showing. I kept opening my mouth and it was such a struggle to find the words I needed, damn frontal lobe.

As I returned to my seat my friend had said something, I didn’t really here her.

“Glad thats over” I’d said.

“I thought you love all that sort of thing” She said, sounding very surprised.

“Things aren’t always what they seem mate”.

 

So, last week I attempted to call my friend Atique, who I spoke about in my previous blogs as only having a short time left to live, due to an inoperable tumour growing in his intestinal tract. He was in severe pain and bed bound as a result.

Whilst at work the following day, he tried to call me. Obviously I dcouldn’t answer, so I planned on calling him back shortly after.

I tried to call the day after, but with no luck. I then woke up the following day to a missed call from him, but I was unable to return the call for some reason or another.

So I leave uni early today due to a dodgy head. When I return home I check my email.

I new message from Atique

..which read –

Hello friend,

Atique died Friday evening. The doctors said his tumour was growing quickly. He was strong and positive till the end. 

 

Fuck. Well I screwed that one up, I didn’t get to speak to him again. Take something away from this, I’m sure I won’t need to spell out the moral to this shitty story. I hope with all my heart he got to see his kids again before he died.

 

 

And the heart grows heavier still 

I don’t tend to ever have my iPhone wallpaper set to a picture of Reese. 

Someone just gave me the idea of putting a picture up that I took of us at the park today in my flat on a large canvas.

The same reasons I can’t see her face on my phone wallpaper every time I look at my phone is the same reason I can’t have a picture of her on a large canvas in my lounge.

I’ve seen her for four hours this week. My long day with her on Saturday starts at 10 and will end at 4 o’ clock, then she’s going away for the rest of the weekend

She constantly talks about him and his kids. In all probability she is probably getting to spend more time with them on a weekly basis than she does with me.

Don’t tell me I’ll always be her daddy. That it can’t ever change. I know that you’re all only trying to help, but thats not the point. And it still hurts me a lot all the same.

 

When will it change? When will she feel like MY daughter again?

 

Who knows. I just hope I can at least make her proud of me with my job and moving forward with humility and integrity.

Thing’s aren’t always what they seem.

Be smart. Bear this in mind.

I will remain quiet. I will focus on achieving what they all said I couldn’t have and trying to make a small difference to others, especially to Reese.

 

I celebrate every day for the incredible gifts that I have been blessed with in my life. The people, the compassion, my amazing job, the love I have for things, my flat, the beach, the energy.. everything. Life is what you make of it, you can be your own heaven or hell.

As I’m waiting to hear news of one life leaving this world again I remind myself that I am still able to put one foot in front of the other and live today. That is why there will be no pain that I feel that I’ll let get the better of me. I’ll be too preoccupied living in the present moment to let anything take precedence over my life.

I do nothing in moderation. If I like something I go after it 100%. 0-100 in a millisecond.

Brain injury recovery is dependent on the type of person you are (Headway ND). If you are willing to fight then you will rehabilitate miraculously. If you want it then go after it,  being fearless of any pain or suffering. That’s been my strategy anyway.

What people think of you is none of your business.

I go after life like a hungry nurse goes after ‘thank you’ chocolates on a long day.

 

I’m in a tricky situation. I want to write about my experiences having spent the last two weeks on a neurosurgery ward, but for confidentiality purposes I think it’s best that I don’t. I could change names and dates, but I think that it could degrade or exploit the atrocious circumstances people have found themselves in. I’m not in to that.

So I will just say that there have been many strong emotions (including the odd tear)  and it’s been a rollercoaster of different experiences which has resulted in me wanting to work as a neurological nurse when I’m qualified.

 

Seeing patients who are in the same terrible situation as I was has been a surreal and humbling experience for me. One that I’m extending by another week!

I took a risk for this

Unfortunately I have just received an email from my friend in Mallorca who has been told that he only has a week or two to live. I won’t lie, thats pretty shit.

When parents are told their baby will die, what would you do or say to them?

I would do the only thing I’m good at. I would try to eek those few seconds of laughter out of them just to enable them a precious moment of respite. I believe more than ever that this how we can all beat a terminal illness, whether that be cancer or any other life limiting condition.

Those few seconds that the child or family are laughing are completely free of heartache and heartbreak.

 

 

Even though you might feel your eyes burning with tears and your heart feels like it’s being weighed down by an anchor, the joy you feel when you succeed with getting these moments will energise you to keep doing what you’re doing.

 

 

 

Even when it’s painful you can never let it stop you

 

What more is there than to love and be loved. Well I love kids and I love giving a piece of my heart to each of them. Good jesus, I think the cringe police are knocking on my door.

[Picture courtesy of google images]

We do get attached to people, it’s in our nature to do that. It’s a risk, but it’s one that keeps me going. I think I’ve found my niche to beating cancer until there is a cure for it, or any other illness that takes people’s lives away from them too early.

I won’t lie, I do feel quite upset about my friend Atique. I’m not sure why, maybe I believed he had a bit longer to live. It’s not like I know him all that well either. I won’t get to see him again, but I knew that.

Life with a brain injury is tough, hopefully I’ve shed some light on that by now. But it hasn’t affected my love for people and helping them when they’re at their lowest and most despairing. When they need help and have nowhere to turn. When they’re on their last chapter.

And yes, I cry for them. I feel heartbroken for them. Maybe that is what keeps me fighting a brain injury and making it as a nurse, something I’ve always wanted and sworn never to give up on.

God I miss you more than words can possibly describe,

When I pick you up from nursery sometimes you do not even feel like you are mine.

Way too much time goes by between spending time with you,

When I look at you I see me and in my heart the pain runs even deeper through.

I’m heartbroken that I don’t even have a say in your busy and colourful life anymore,

Sometimes I wonder if you’ll get bored of me and of this I cannot even be 100% sure.

But there are a few things I have to do that I’m sure that will make you proud,

Because becoming a nurse against the odds is the silver lining in my cloud.

 

Nothing has stopped me yet and my supporters are so very few,

But one day when I achieve this I will remember to introduce them to you.

A children’s nurse with tattoos sometimes isn’t easy for people to comprehend,

But I’m happy with people coming and going and the misunderstandings having no end.

As long as I can still see you even though it’s not nearly enough as I mentioned above,

Because the most important thing in life is to love and in return be loved.

 

You might want to think about a different career Mikey.

‘But it’s my dream to be a nurse’

You’re lucky to be alive. Just think about it.

Since I restarted uni..

Divorce. False allegations made to the police. False allegations made to my uni to get me kicked off the course. The death of two family members. All this alongside trying to recover from brain injury and learn to live again.

I might not be perfect. I might have my faults. I might not be in your life much (not my choice). But I’m telling you now, when your old enough to read this, know that there is nothing that is stopping me over what I do have control over.

YOU are what motivates me to get out of bed everyday and do this. YOU are the one that gives me the belief I need in myself.

YOU are the reason I am able to go and fulfil my dream of becoming a nurse. Caring for people is the greatest thing you can do.

So many people have tried to make me fail. But YOU are what has helped me keep my cool and make better decisions.

You would be surprised where these serpents have sprung up from, the vultures that have made life a living hell for me for years. Urging me to give it up, teasing me with the promise of an easier life.

 

 

And now I’m going into my final year of nursing. I’m going after what they all said I couldn’t have. You need to be aggressive and relentless in what you believe to be right. 

 

 

25th July 2016

As I stood clutching my hand luggage waiting to board the 747 aircraft, I knew what I was just about to try was risky. There were people around me everywhere who had small children that were excitedly shouting and squealing which did wonders for my ear drums, because my ear drums were relaying the noise back to my broken noggin 10 times stronger than what it actually was.

I was travelling to Mallorca on my own. What would I do when I got to the other end? What if I became confused, disorientated or dizzy? What if I had a flashback on the plane?

 

If my mind and my flashbacks had a dialogue during this journey it went something like this:

Flashback: ‘Remember when you were on that Fox Flight air ambulance jet tied to the bed? Well now you have a window seat, there’s nowhere for you to go if you needed to get up. You’re enclosed in. Just like on that leer jet. 

Me: ‘Yeah, I remember. Wasn’t the best day out I’ve had’

Flashback: ‘Oh thats not scaring you? Try this – remember what the pain felt like in your head from all the haemorrhages? Remember the tubes sticking out your veins? Remember the sepsis running through your veins? You nearly died a few times on that journey’. 

Me: ‘Absolutely mate, but I didn’t. And for my troubles now I’ve even got a Fox Flight t shirt that I occasionally wipe my arse with when I’m out of loo roll’. 

Flashback: ‘Funny guy aren’t you? Well, remember the conversations around you on the flight? Your dad asking the doctor if you were going to survive? And what did the doctor say? He said he didn’t know. You couldn’t move’.

Me: ‘That doctor sounds like a nob head if I’m honest. You two would get on well’

Flashback: ‘Your tattoos might be a hoax to cover up the pain that your scars hold, but they can’t hide the ones in your head. You know that I follow you around when you’re at work in that hospital. You know I’ve come back many, many times before and I will continue to follow you. You will never be rid of me’.

Me: ‘I’m glad for your sake. You don’t strike me as somebody with lots of friends. I’ll see you in a few weeks when I start work on the neurosurgery ward, you’ll have plenty of opportunities there. Sorry to cut this short but I need to order a burger from that pretty stewardess I’m Hank Marvin mate’.

Flashback: ‘Ok mate have a good holiday, no hard feelings. It’s just a job I have to do’.  

 

Ok so the last sentence was a joke.

 

This summer has been the best of my life. I’ve met some wonderful people who have taught me that I am a likeable person, that I’m not as awful as I was erroneously made to believe for so many years from someone I thought loved me.

 

I’m living again.

 

I’m a new person. For the first time in four and a half years I like who I am. Thank you so much to all the amazing people I’ve met who I am happy to have known and now call my friends. I now feel more confident in myself and this is allowing me for the first time in 4 years to make more friends at home now.

Recovering from a severe head injury has taught me lots of things. It’s taught me that there will come a time where I’ll become scared at the thought of trying new and outrageous things. But when the time comes I need to gain a huge amount of courage and be able to just say ‘fuck it, I’m doing it’. This is the only way my brain will ever learn how to live again. Thats the only way I’ve learned how to live a bit more ‘normally’ or to feel ‘happier’ again.

It’s taught me that if you’re willing to put in the work and be brave enough change, like miracles, is possible.

 

So before I write a blog on how amazing my holiday was, I need to write about something that is burning a hole in my horse and cart (heart. Not fart).

So I arrive in Mallorca two weeks ago, looking forward to catching up with an old friend who owns the frozen yoghurt shop my family and I regularly frequent. He’s a lovely bloke, very friendly and I was looking forward to seeing him again this year.

When I arrived at the yoghurt shop, his wife gave me the sad news that he was unwell and not currently working. He is terminal ill suffering with an inoperable mesothelioma cancerous tumour  in his stomach.

I asked if I could visit and whether he would like to see me. She was very adamant that he would love to see me and I arranged to visit the following day.

 

He looked frail and like a different person to the one I had seen on previous holidays. The worst part was when I asked how his kids were, he had replied

They have to live in Morocco with my mother in law. It upsets them seeing me like this.

That hit me like a freight train carrying passengers bound for a fat fighters camp. I’m a strong dude, I work with dying children and have done for a long time, it’s my job. My specialty.

I felt my eyes becoming hot and filling up. I looked at his lovely wife who had started to sob a little bit too.

Well smack my arse and call me Julie. I was not expecting to show so much emotion here today.

I fought back the tears and held it together, I just hope he didn’t notice how upset I got. At times like this some people want you to get upset, it shows you care. But I knew that this guy needed strength and perhaps some wise words from the children’s nurse, not tears. There I am, a big bloke covered in tattoos, and all I wanted to do was cry and throw my arms around the dude and tell him all would be fine.

As I was leaving, his wife took me aside and said

That has helped him so much. He has been so down, but today I haven’t seen him like this in weeks.

I visited him most days after that, bringing different jokes and conversation with me each time. He told me on my last visit that each time I would visit he had no pain, that the pain left him.

We can’t always beat the illness we are treating people for. I’ve said many times in my blogs that I might not be able to take the cancer away from the children I look after, but one thing I can do is make them laugh. And for those few seconds they are laughing, there is no pain. There’s no fear, no worry, no suffering. They forget. 

It was hard saying goodbye yesterday. That will probably be the last time I ever see him. But I will carry him in my heart for the res of my life like I do with so many lovely people that have had to leave before their time. My heart has been heavy for a while, but I will be more than happy to add some more weight to it.

And the illness? Well, I’ll continue looking after terminally ill children while putting my two fingers up to cancer. I could have stayed away and just enjoyed my holiday, I could have stayed away for fear of feeling like I do now, but who the fuck will benefit from that. I would visit him a thousand times if I could.

Once again, I have proved to myself that although we cannot always win when we treat the illness..

….if you treat the person, you’re guaranteed to win every time. Adios Amigo.