A letter from my hubby.

Each morning I get up I die a little
Can barely stand on my feet
Take a look at myself in the mirror and cry
Lord, what you're doing to me? 
I have spent all my years in believing you
But I just can't get no relief, Lord!

"I am a collection of thoughts and memories and likes and dislikes. I am the things that have happened to me and the sum of everything I've ever done. I am the clothes I wear on my back. I am every place and every person and every object I have ever come across. I am a bag of bones stuck to a very large rock spinning a thousand miles an hour." Macaulay Culkin
People think they have summed me up, but they wrong I am so much more than what people assume.
I am a husband, lover, dad and a friend, I bleed when I fall, cry when I am sad and laugh when I am happy. Mainly I am just me. Loved by God.

I am that weird guy that you will swear is gay but is as straight as an arrow. The nerdy person that likes art, fashion, photography, music, food, likes to read, the person that is sensual and likes sex and has a bit of OCD. Yes the guy that loves to paint his nails, loves manicures, pedicures and waxing his legs. I am the guy that takes his teddy bear to the hospital with him and cries for any silly thing. `Oh I have ataxia.

How do you prepare yourself mentally to handle this shit?

It is disturbing, and all you want to do is kill yourself.

People ask me, Have you tried yoga? Exercise? Meditation? Kombucha? Counselling?  ...and the list never ends. I don’t have the energy to explain that YES!, I’ve tried them all, I’ve tried crystals, dope, alcohol, prescription medicine, seeing a phycologist, going to church, praying, going to the gym and not eating any junk food, yes everything and the fact is that I am disabled and have a very rare disease and that I am in a wheelchair and most probably will die of this shitty disease. I also have severe anxiety, struggle with depression and have OCD. What I want to try is acceptance. I want to see what happens if I can simply accept myself for who I am: battered, broken, hoping for relief, still enduring somehow. I am living my life doing the best I can with the cards if been dealt with, no I am not lying in a heap but I am doing me. I will still take a cure if it’s presented to me, but I am so sick and tired of trying to bargain with the universe for some kind of cure. I truly miss the things I cannot do no more but give me a break. I am trying to let go.

 The key to living a good life is not giving a fuck about more things, but rather, giving a fuck only about the things that align with your personal values.

Not giving a fuck is not about being indifferent. It just means you’re comfortable with being different. Don’t say fuck it to everything in life, just to the unimportant things.

Mark Mason – The Subtle Art of Not Giving a F*ck

I am planning to go live my life with full intend and go out with a big bang one day. Fuck it, let's go.

I am fine being a badass knowing myself and knowing what I give a fuck about.

A few things I truly miss:

 1. I can no longer go for long walks on the beach, I can also not swim in the sea, snorkel or do any water sports so am always sitting watching from the side.

2. I can no longer climb steps and this means there are a thousand places I cannot go.

3. I can no longer enjoy going for hikes or climb a mountain or any outdoor sports because I am in a wheelchair and my disability affects my coordination.

4. I can no longer play the guitar, this makes me very sad.

5. I can no longer have a shower as we rent and there is no seat or bars and a big step.

6. I can no longer cook as the counters are too high and with my poor coordination I might cut a finger off or burn myself.

7. I can no longer work, I am in a wheelchair with a speech impediment, I do not think people want a minister they cannot understand.

8. As I get worse people do not understand me and look at me as if I am an idiot so phoning someone is never easy and when I get anxious I tend to talk very loud and because I am frustrated with myself I use the F word.

9. I had to stop driving, that is terrible and giving up my landy sucks.

10. I can longer just eat anything as the risk of me chocking is very real, I ended up in hospital and had to have a scope remove a piece of chicken that was stuck.

11. Worst of all is that "MY DOG" died.

I have lost my independence, and constantly have to ask for help. Every day I am dying a bit more so excuse me for not always being chipper.

So the long and short it all is that it sucks but I am trying to get over myself and letting go.

 A few things I like:

1. Favourite book: Hitch hikers guide to the galaxy.

2. Favourite food: Tandoori Chicken . with loads of chilli.

3. Favourite drink: Champagne.

4. Favourite movie: Shawshank redemption.

5. Favourite series: Seinfeld and Big Bang Theory.

6. Favourite pudding: Baked Cheesecake.

7. Favourite IT: I love all things Apple.

8. Favourite actress/most sexy: Angelina Jolie.

9. Favourite thing to do: Throw things away, I strongly believe less is more. 

10. Favourite band: Queen.

11. I hate photo's of myself.

12. Favourite saying: "Do not go to bed until your homework is done."

13. I love tattoos and piercings.

14. Most importantly I love God.“Spiritual but Not Religious,” I have a personal relationship with Jesus but hate “Religion”. Jesus message is very simple, ~ He loves everyone and so must we.

 I am a committed Christians who wish to live my life with conviction and try every day to put into practise Jesus's teaching. I try to be the change I want to see in the world, to live with love to all creatures and not to judge.

I think we can simplify our life's, be less consuming and more giving.