My Music, My Crohns

I’ve always had a passion for Music and in particular drumming and producing. In 1994 I was made redundant from my job but was quickly offered a job to manage a recording studio in Malvern (an artistic/spiritual town at the foot of the Malvern Hills). The studio was called ‘Merlyns Cave’ and as the name suggests, it was a magical place. It was equipped with a huge mixing console, 24″ Studer Tape machine (bought second hand and was used to record Queens Bohemian Rhapsody). It had a huge array of outboard gear and a 1st generation CD-Writer which in 1994 cost £5k and each blank disk cost £25.

The studio also had Akai samplers and synths so I was introduced to this whole new world of electronic music, midi and the future of sound. All my spare time was spent producing music and in the day I ran the studio and assisted with the engineering. Long nights and sometimes no sleep for days meant I learnt such a lot in a small time.

After leaving the studio and starting my own design company I had no time for music. All my energy went into my business. After I sold that business in 2003 I invested some of the sale proceeds into a basic studio set up at home. This never really got set up to it full potential because Crohns kicked in and basically life became very difficult, very quickly. So from 2005 to 2008 was a complete mystery to me. I have very little in the way of memories from this period other than desperation, misery, pain, hospitals.

Then 2009 was a new beginning, a new start for me and my music. I started writing again in 2008 whilst in hospital. It was a vehicle to get my emotions out. I had so many things to say and also to make sense of in my own head. So Music and Photography became my vehicle to be creative and get my vegetative mind into shape.

So here we are now. The studio is finally set up. I have 30 songs in various states. 5 singles and a 4 track EP on iTunes and Amazon. Here for iTunes

Time to keep going……

Lee x

Worn Out

I have been meaning to blog for months now, but due to heavy workload and recording I really haven’t had the chance to sit down, think and write.

Constant bladder infections continue to interfere with normal life and a constant stream of deadlines dictate the pace of things.

I’m sitting here today, hot, tired and after a 10 hour day, wanting to sleep. The only thing that kept me awake was my discovery that “Is This All” is currently No.6 in the CD Baby Indie Chart. That was a shock but a really nice feeling. I’ve sold 850+ so it’s better than my target of 20-50.

The adrenalin has now faded and the tiredness returned. Hopefully tomorrow I will start my communication with the world once more. But for now I need to sleep.

Lee x

Lots to catch up on!

Well it’s been several months since I last blogged and that’s mainly due to my Ninja Dad training which has added a huge pile on my plate. Finally Joanne is back to full strength and back at work, following a successful surgery, allowing me to focus on my business, which has slightly suffered as a result. Saying that, I have coped so I’m actually quite impressed with myself.

During this time I’ve been quite involved in my music and taken that to the next level with some further investment in my home studio. Today my studio monitors will be delivered completing the acquisitions. A new soundcard module, guitar and software have allowed me to up the quality considerably. I’m looking forward to remixing all 9 songs to a new depth with better clarity and separation in the mix. Watch this space.

Whilst on that subject, Saturday saw the completion of my rather therapeutic track called “Take the Pain”. SONG HERE. This song was written in 2008 when I was in a shocking state of mind. Rock bottom, giving up, battered by surgery, in hospital, lonely, depressed and hanging on. It’s been nagging at me for years to record it, so Saturday I decided too. It was quite an experience and outpouring. I sung it with emotion that I don’t think I could ever do again. It was a one off moment, never to be captured again with such feel.

I had some wonderful comments on the song and it really struck a chord with fellow Crohnies, who share the experience as they too have indeed lay on the bed looking out of the window watching the seasons passing by. To those people, thank you….

Where next for me?

Lee x

LOOK OVER YOUR SHOULDER..!!

On Tuesday my wife went into hospital and I thought nothing of doing my job, the school runs, sorting the children out and stopping them worrying about their mum. After all I’m a good dad and it’s what I do.

The first time we visited was yesterday evening (Wednesday) and on route we picked up my wife’s friend. When inside the hospital we headed for the ward and as we got deeper into the building I started to get clammy and feel slightly nervous about being there. Bear in mind I had been there for the most horrendous 9-months of my life and witnessed every routine and smelt every odour. I recognised people, some even recognised me.

When in the ward we sat and chatted and checked on my wife’s condition, who was doing well. I was looking around, watching the routines and that started triggering some rather uncomfortable memories. I was in trouble. For 5 minutes I managed to keep control but for those around me and in particular my wife’s friend who noticed I was not comfortable. At one point I thought i was going to really loose it and leave as I knew that wasn’t the place to have a meltdown.

When sat back in the car I let out a huge sigh and my wife’s friend asked me if I was all right. She obviously knew my circumstances and could see I was struggling. I said I’d be OK and we drove home dropping her off on the way. This all seemed OK and I thought I was ‘out of the woods’. Well to cut a long story short, I wasn’t and 100 yards from the safety of my home, meltdown.

The children saw me and were really worried asking if I was OK and I asked them to go upstairs get washed and ready for bed and I called my wife’s friend and asked if she could come over and put the children to bed. She did and I calmed down a little.

So I guess even after a long time, when something reminds you of what’s happened or what you’ve come through, beware. I was tired from work and other things, I was not expecting it, but I didn’t look over my shoulder and it knocked the stuffing out of me!

Us Crohnies are survivors and we just have to deal with what rolls our way. Not the best night of my life, but I will right it off as another experience and hope I never set foot in that hospital were I seemed to have become part of it’s history.

Today Is a better day!

Lee
x

Fuck drugs, give us iPads!

Since getting the iPad 2 several weeks ago I haven’t been able to put it down and have been blown away by its potential.  It does everything for me, from Tweeting to checking my bank balances.  I can sort and edit 1000′s of my photos and I can also record ideas for new music tracks.  Brilliant,  just brilliant. 

Last night I was awake at 2am and couldn’t get back to sleep although I think i grabbed an hour in there somewhere.  So I got the iPad2 out,  communicated and had a look at what’s going on in Twitterland.  Shall I watch a movie or listen to some music in my headphones?  Shall I tweet, blog or play games?  I realised I could do anything.  I have about 12 games of ‘Words with Friends’ on-going, so I played my moves, talked to fellow Tweeter ‘LisaAffi’ in California whilst playing 4 games with her.  So I’m sitting there at 4am, playing scrabble, talking to someone 6000 miles away.  That’s just insane.

If only I had the iPad when I was in hospital, as I think my time would have been a little better because the boredom and endless routine really messed with my head.  I recommend the iPad to anyone how deals with constant Crohns related shit.  It’s a complete friend to me now and when everyone is asleep and you’re sitting downstairs in the early hours scratching your ‘bits’ thinking of stuff to do, i can just reach for the iPad.

Fuck drugs, give us iPads.  That could be our new Mantra.  Fuck Drugs, Give us iPads. 

Lee x

He Made it For Me.....

Twittering Therapy

Up until recently I’ve rarely discussed Crohns or my experience with its destructive powers and the affect it’s had on my life, my marriage or my ability to deal with all that life throws at us. In truth I have nobody to talk too apart from a local support group, which mainly consisted of older people baking cakes and holding craft fairs once a month. I want more than that and I’ve reached the point were I need to start making sense of the past 5 years.

It was only at the start of the year that I really embraced Twitter as a good place to meet like minded Crohnie types. Since coming out of Hospital in August 2008 I have been active on Flickr but this is dedicated to photography so limited in it’s therapeutic abilities, for me anyway. I have made some good acquaintances on Twitter and a close friend too, who has had a huge impact on my life, just by being a great friend.

There are some like-minded people who either follow me or I follow. Some are transient dabblers whilst others are the core, the stickers, the regulars of what seems to be a growing Crohnie gathering, the #TTClub. Some I just don’t like and the block button has been dispatched in their direction. Never darken my door again! But in the main I have found Twitter to be a pleasant place to go.

I have to say that I’m not a big fan of FaceBook. In fact I really don’t like it at all. I’m probably in the minority but I have a mind of my own and FB just seems to be manipulative and controlled by others externally. They engineer how we interact by adding, taking away and reinventing new things so they can keep us there. Twitter does not because it’s so simple. You have 140 characters and that’s it. For me FB is soon to be deactivated, actually I will do it now….

Done…FB no more. Seriously, I am gone.

OK, where was I? Oh yes, Twitter. Well since being on Twitter I noticed people like to Blog and that’s introduced me to that world too. There are some interesting writers out there who have some interesting perspective on life, love and other matters. Since I started ‘blogging’ i have found it very rewarding and also therapeutic. I think I’ve opened a can of worms though because I’m really starting to relive some of the horrors of my horrendous 2-years. I did consider stopping but after my blog about hospital last week, the reactions from people actually made me more determined to continue. This wouldn’t have happened if it wasn’t for Twitter and the amazing people that I have met in that world.

So, is Twitter a good thing or not? Yes it bloody well is. I think I’m definitely being helped – so for anybody who reads this, thank you, thank you, thank you!

Lee x

An Inspiration, What Crap!

Yesterday I was told by a close friend that I was an ‘inspiration’ and that seeing what I went through with Crohns, made him consider his own mortality. He even said that he just couldn’t have endured what i did and kept the smile I always had. This got us talking more, albeit on the phone and not face to face which would have been better. I told him that i wasn’t smiling because i was happy but because if i didn’t, i would have given up. I said to him that when you’re in that situation you just survive by whatever means possible and by survive I mean go into ‘autopilot’, where you switch off your other senses just to deal with the prolonged shit. It’s your bodies defence mechanism or your minds, but I guess both are connected so both affected.

After having a good natter we said goodbye and promised to have a night out on the Beer together, get pissed and grab a late night kebab before being sick in an alley somewhere. Looking forward to that!!! When I put the phone down something hit me and no it wasn’t the wife, it was like a release, an overwhelming surge which quite honestly reduced me to a grizzling wreck for 10 minutes or so. My wife gave me a hug and we just sat there for about 10 minutes just quiet and saying nothing. When I finally finished this display of blubbering, my wife just gave me a kiss and made me a cup of tea. What a star!

I recalled one night in hospital when they were extremely concerned about my infections, the output from my six (yes 6) stoma bags, the vacuum pump sucking crap out of my body, and the realisation that my blood pressure was so low and my heart so quick, I was about to crash. I remember laying there and thinking I’ve had enough of this crap now, I want to go, I can’t do this anymore, I’m tired, I really want to go. I remember closing my eyes that night and saying goodbye to everyone and everything and really determined that I didn’t want to wake up. I really didn’t and to this day i know i really really didn’t. I meant it and was at peace with my decision on my terms. I had given up completely. This was the one moment in the whole of that time that I had given up.

When I woke up in the morning I was angry and I just could’t take the shit they were subjecting me to anymore. For several days nobody could speak to me, I didn’t respond and I made no effort to interact with anyone including the doctors and nurses. I was never abusive, as that’s not in my nature, but I was very aware I was being a pain in the arse. I think at that point they knew that I had given up. A TPN in my neck line was all that was keeping me going. That big red bag of stuff just keeping me alive. I was fading away and they were just keeping me going and fighting my will to give up. That was the most stubborn I have ever been. I really wanted to die. I refused all treatment and I even disconnected the TPN feed. If I could have got a flight to a clinic in Switzerland I would have. Two years of complete shit had taken it’s toll.

The doctors and nurses stepped up the game. They bought my family in and my children too so I would see there was something worth fighting for. It only fucking worked. The clever bastards had beaten me again and I know that was the exact moment when everything changed. I remember it so vividly that even writing this blog I’m holding back my tears. if they hadn’t had done that, I wouldn’t be here now, not a chance, I was fading fast.

Although it’s now been 3 years since “I was fixed” physically, it seems i still, like many others, carry the scars of battle. I consider myself well, happy, and emotionally OK, but occasionally I have these little episodes which are sparked by the strangest things like a chat with a friend, meeting one of the nurses at Tesco’s or even seeing another ill person. I am resigned to the fact that the trauma will always be with me, it’s part of what I am now. Anyone who has spent 9 months in hospital will know that something changes in you forever. I went in a wreck, came out fixed but still have the scars, both physical and mental. This shapes me.

I don’t think of myself as an inspiration but I do think of myself as a survivor. My story may inspire people but it’s just something that happened. There are people far worse off than me and more inspirational too. I just have Crohns and it’s kicked the shit out of me. The only thing I want people to take from my story is that they can survive even under the most stressful conditions. Never give up hope. Life will get better. I’m living proof, but only just!

Lee x