Choices to be made, so Choose.

Kevin's Blog:

Choices to be made, So choose.

"Rage, rage against the dying of the light" - Dylan Thomas

      I had almost finished this post when I suddenly realised it was all wrong and needed to be scrapped.  Things have been changing for me rapidly over the time I have been writing this blog.  I have been extremely focused on really getting to grips with myself.  I had managed to drag myself out of a fairly deep hole.  Looking forward, I have to find a way of staying one or more steeps ahead of my demons.  Self-hate, doubt, and hopelessness have an uncanny way of creeping up on you when least expected.  I have realised that those negative thoughts come from only one place, my mind.  Sure, I have faced a lot of ignorance and prejudice but I'm the one who has a massive problem with indifference and apathy.  What role do I play in my getting in such a bad state of mind? How do I prevent myself from becoming so isolated and depressed again? What do I need to do in order to put myself in a position to achieve what I want?  I have started to examine just how I tick, to see what is going on in my subconscious.  One of the best things I have ever done for myself is to take the initiative and go to a counsellor.  In my opinion, everyone should have an objective person from outside their inner circle to help keep them honest about themselves.

      I was lucky enough to get a counsellor who had no experience with person's with a disability.  This was good because I imagine a counsellor specialising in disability would have been over interested in my DMD.  After all, I am a normal man.  My DMD only affects the muscles of my body.  My intellect and spirit are that of a normal man.  My counsellor is truly brilliant.  He seems to be one hell of a man as well.  It is very important to me that that is the case, I doubt I would listen to the opinions of an ass hole.  The most important thing about seeing a counsellor and the like is to be honest, painfully so.  Everyone is different but if you haven't lost it emotionally in a counselling session, you need to go deeper into your mind, there are some messed up things in there for sure.  If you are really thinking critically and honestly it should hurt at times.  For me at least, it damn well has.  My counsellor see's me as a full man, someone who is a man first and..... actually I've never heard him refer to me as disabled.  Wow, that's cool.  At the start, the main thing coming up in the sessions was my desire for and fear of romantic relationships.  My insecurities were running my life.  He has tried tirelessly to build up some self respect in me, cheers mate!

      The counselling has involved a lot of self discovery.  With the relationship issue and everything else I must appraise my role in it and take responsibility.  So, my role.  I wasted a hell of a lot of time blaming others for my imagined undesirability.  I had an endless supply of why I shouldn't justifications for not even trying to date or have a relationship.  I thought the world would implode if I were turned down.  Hahaha, everyone gets turned down sometimes, big deal.  Nevertheless, that is what I did to myself for years, effectively I disabled myself.  I told myself things like, I'm not good enough, I'm not man enough, I'm not worthy, I'm not a whole person, woman hate me, they think I'm ugly, they think I'm useless.  It would seem I like lists of horribleness.  So, what will I do from now on.  Well first of all I will tell myself the exact opposite of all that nonsense.  That starts now.  I'm good enough.  I'm a decent man.  I'm a whole person.  I am of value and worth.   My DMD is NOT a personal failing.

      Be it relationships, work, study, or whatever, the problem seems to have the same root cause.  It has become increasingly clear that the stumbling blocks I face are of my own creation for the most part.  Though the focus of my counselling and blog has been predominantly around relationships, it's on a deeper level about working out just who the hell I am anyway.  I have long been reluctant to describe myself.  To me that is a reflection of being unsure who I was and of an expectation that whomever I was, that person was certainly not acceptable.

      I've written extensively about the problems of my life, like I'm the only one right?  Here is some progress.  I have never worked before.  I do now, I have been doing a few hours here and there at the camping ground my family operate.  I'm no expert with computers or software but I have no difficulties with simple things like data entry and other basic tasks.  That represents a diametric shift in my attitude toward working.  Usually my thoughts of work would have been drowned out by my insecurities, small steps for now, I'll get there.  I have decided to take a paper on counselling to see how well I like it.  All going well, I'll continue to study toward becoming a counsellor professionally.  I figured the readers deserved some good news for sticking it out during the sad stuff.  I have found a drive I have never had before, it feels great.

      I watched a movie recently that had a part in it where Michael Cane is reciting a poem by Dylan Thomas, 'Do not go gentle into that good night'http://www.poets.org/poetsorg/poem/do-not-go-gentle-good-night.  It resonated with me deeply, especially the line I quoted 'Rage, rage against the dying of the light'.  That line coveys exactly my current attitude toward my life.  I am raging against my own mortality, raging against my own indifference, raging against isolation, raging against my efforts to sabotage my own happiness.  I have made the choice to live, to live in abundance and fully.  I'll end with a bit of a mission statement.  I know that in the end, my DMD wins the day, complications from it will one day take my life.  I'm here to tell you it is going to have to do that against my will, I'm going to fight the bastard all the way down.  I'll leave this world kicking (haha) and screaming.  If this is a fight to the death, I will not go gentle into that good night and I will rage against the dying of the light.  Until next time, Peace and Love to you, Kevin J.

Confronting Feeling

Kevin's Blog:

Confronting Feeling

"A condition of Truth is to allow suffering to speak" - Dr Cornell West

      When I first started to write these blog posts it didn't occur to me that so many would identify with where I'm at in my life.  It didn't fully occur to me that many things I'm struggling with, others are as well.  Though I do have some added baggage, what my questions and worries are reflect those of my peers.  I have begun to truly see that in a fundamental way I must not be so unique.  So, I'm not so unique after all and my story is in fact just the human story told from a different perspective.  The question is, what do we want?  I feel that it is a variation of the following:  We want to form emotional connections with people.  We want to interact with one another in a meaningful way.  We want intimate relationships.  We want to form partnerships and raise families.  I don't wish to attain normality, however I should want and do want the things listed above.   Relationships aren't things, 'relationship' is an abstract concept but we describe it as an object to make it seem more tangible.  The quality and character of relationships are much more important than mere 'things'.  The theme of this post will be relationship and sexuality (in a broad sense).   

      I have long been very concerned with the way people view me.  I have always agonised over what prejudices people were holding against me.  Everyone fears the judgement of others, it's just a little more difficult when you have something obvious to be judged for.  Most people know very little about disability and less about mine.  I think they usually associate disability with spinal injuries or ALS (Ice bucket challenge) or MS.  Duchenne Muscular Dystrophy (DMD) isn't near as common as those three (collectively).  I want to start to change the way people think of me, I'd like to take some control over the narrative.  There is a lot of ignorance among the general population and shockingly among health professionals as well.  The scientific literature is lagging woefully behind what the reality of disability is, especially when it comes sexuality and relationships.  So even if you Google 'DMD' it is very difficult to find anything that's really having an in depth look at those issues.  The medical community seems unwilling to bring it up, so I will.  

      To hit this head on I'm going to be direct.  DMD is a disease that effects the heart, lungs (the diaphragm), and mostly skeletal muscles.  The male reproductive system is not affected by DMD in my experience or to my knowledge.  I do not know what people think I'm capable of as they seldom ask and when they do its because they're drunk (hilarious).  I can understand that sex is an issue your not really meant to discuss (in the disability context at least).  I imagine that many people are just trying to be mindful of the sensitivities of others.  If you are curious about anything to do with a persons disability, just ask.  If you approach your curiosity it in the right way and respectfully, no one really has any reason to be offended.  It's just a part of life, I think it's time we stop being so unwilling to examine our beliefs about sex.  That is especially true with regard to persons with disability.  Humans are inherently sexual, even the disabled ones.      

      It isn't sex so much as it is intimacy that is a concern of mine.  It's something you are very unlikely to come by unless you are in a trusting and communicative relationship.  Intimacy is a kind of communication itself.  What is it communicating?  Love, an emotion so visceral and primal.  So innate as to transcend even time and space.  If I could answer the question 'What does it mean to be human' in one word, it would be love.  Love is essential to life.  Without it I don't see how anyone could survive.  If you could survive, I doubt you'd thrive.  Tough there are many who love me, I am only human and I long for more.  I long for something that family cant give you and friends are unlikely to share with you.  There is something different about being with someone in a romantic sense.  For this, there is no surrogate.    

      I'm never really sure how much detail is appropriate, but I have been brief so as to avoid over share (for my sake).  I shall go more in-depth into my thoughts about love, relationship, and intimacy another time.  It is an extremely difficult topic for me and most other people I'm sure.  As I said in the first post, I hope to access enough courage to speak the whole truth about my thoughts, feelings, hopes, dreams, and fears.  The Truth shall set you free.   Until next time, peace and love to you.  Kevin J

Waking up finally

Kevin's Blog:

Waking Up, Finally

       I had my second post almost done and realised I needed to acknowledge how much the positive feedback means to me.  I'd also like to acknowledge my family and others who have love for me. They have played such a massive role in my still being alive, in a meaning way at least.  The attention that my first blog post has been given is a shock.  I am truly stunned by the amount and quality of feedback it has received, both on the original post and the ten or so follow up shares.  I have rarely been so humbled in my life.   The messages of support and solidarity are of profound significance to me, I am moved.  I made the right choice by writing this, frightening though it was.  
    

This post won't be brief like the first, bare with me.

      In the previous blog entry I wrote about being in crisis.  This is true, however by putting things into context you will see that an existential crisis is a good thing compared with where I was.  It is my intention to end this post on a positive note.  I want to get the sad stuff out of the way.  Let what I say be two symbolic middle fingers directed at the fear in my heart.  That fear has held me back long enough, no more.  
      March 17th of this year was probably the low point of my adult life.  Nothing stands out for me about that day accept for what I wrote in my notepad that evening.  I won't repeat it but suffice to say, it was ugly.   It's one of those things about your internal critic, you never know when it will turn up or why.  It was the most disgusting thing I've ever said or written about anyone and it was about me.  We are our own worst enemies at times.  The mind can be a scary thing left to it's own vice's.  It's the little things that make the difference, for me anyway.  On this occasion, the thing that stopped me from doing something terribly unfortunate was the photo of my first nephew on the wall above my computer.  I could not bare to think I'd be the first source of major trauma in his young life.  His photo is there for those dark moments when despair hits hardest. Thanks again buddy.
      So, for context.  I was in a personal hell.  I was hating myself.  I was doubting my worth.  A part of me was done with life and had had enough.  What happened to me happens to many people.  I became isolated to the point of being emotionally sick and spiritually disconnected from other people.  How I let that situation arise I do not know.  I remember growing up thinking I'd always have people around me.  The problem was I couldn't see that the biggest enemy to my own happiness was me.  As I've been on the way up from my emotional rock bottom, I have learned that a crisis is a major upgrade from a living hell.  
      When faced with grief and trauma sometimes a person can develop bad coping mechanisms, in my case extreme denial.  An example of my denial in action was my attitude toward children.  While I always have and always will love my Nieces and Nephews, I had convinced myself that I didn't have the remotest interest in having my own children, ever.  I was using denial as a means of avoiding the stark reality of my isolation.  It's easier to face something by pretending you don't want it, than asking the difficult question of how will I get it.  Up until the last few months I was just to down on everything to face tough philosophical questions or examine what my wants, needs, and desires were..  This crisis is about the loss of a coping mechanism (a destructive one).  It's as if I've woken up from a dream and hit the psychological reset button.  
      Now the good news.  The change of circumstance I alluded to in the first post.  Sometimes it only takes one person to change things for the better.  I have been recently blessed with two people that have come into my life and have helped change things for me in a fundamental way.  These two people know who they are, so I don't have to mention them by name.  I realise this is a really massive thing to say but they have saved my life.  They really have, I had given up on myself and was on the way out mentally, spiritually, emotionally, and physically.  They have come into my life and shattered the mirror I was viewing myself in. That mirror was damaged and distorted.  The distorted image of myself  I saw in it  was one I had come to hate.  The self I saw wasn't really me, just what the distortion made me appear to be.  The 'mirror' is a representation of my self image or self perception, the way in which I view myself in the world.  These two deeply beautiful individuals in there own ways have helped to restore my sense of self worth.  Without a feeling of value as a person, I could not live very long.  They have helped in a way I can't adequately empress in words, I'm deeply grateful for their presence.  I'm also grateful to my family for helping me stick around long enough for things to turn the corner.  I think I'm waking up, finally.  Until next time.  Peace and Love to you, Kevin J    

A Starting Point

I am going to have a go at writing a blog.  I hope to access enough courage to speak the whole truth about my thoughts, feelings, hopes, dreams, and fears.  I want the reader to try and understand where I'm coming from as a person even if they don't agree with what I've done or my perspective.  To those who are reading this and know me personally, I don't know what you will make of some of this.  I can't say for sure that my story is all that compelling but I will let the reader decide.   I am writing this as I believe it might be a therapeutic or cathartic process for me.  If anyone gets anything out of reading this blog than that’s fantastic, if not well that’s fine, it helps me at least.  This first paragraph is an introduction so without further ado.  My Name is Kevin, I'm a New Zealander from Waikuku Beach in Canterbury.   I view myself as a reasonably intelligent and well informed person.  I am a mostly normal man, accept there is always an elephant in the room with me, always.  Everyone has a point of difference or something that sets them apart from others, mine is just much more noticeable.  I'm quadriplegic as a result of a progressive and physically debilitating muscle wasting disease, Duchenne Muscular Dystrophy.  The thing that makes my disease outwardly obvious for everyone is the 'power wheelchair' that I use for my mobility.  I am twenty-five and there are lots of things’ that haven't happened for me that many, if not most people take for granted.  Yes, I have learned how to relay something really terrible in the least words possible.  I hope I don't sound bitter or depressed because ninety-five percent of the time I'm not in a 'bad' state of mind.  I will be brief and go into things in more depth in later blogs.

Why am I writing this now? 

         I am writing this now because I am twenty-five years old and suddenly I find myself in crisis.  I may not be the only twenty-five year old in crisis but I can only speak for myself.  What sort of a crisis you may ask... Well an existential one, a crisis of existence.  Why am I here?  What is my purpose?  Will I ever have romantic relationships?  Will I ever have a partner and children?  Will I contribute anything to society?  What would people say about me if I die tomorrow, what would be my legacy?  I am sure that many people struggle with some if not all of these questions.  Then again most people (a generalisation, I know) my age don't ask the relationship question in terms of 'will I ever?'.  I doubt that most contemplate the 'if I die tomorrow?' quite as much as I do either.   There are emotional, intellectual, spiritual, sexual elements to the crisis I am in.  To be human means you will have crisis or catastrophe in your life no matter who you are, rich or poor, fat or thin, able or disabled.  The origin point for this state I find myself in is as a result of a really big change of circumstance in my life.  Things are really going well for me in spite of how it might seem. 

       I have long wanted to write about my thoughts and views but was quite caught up in self-doubt or even self-hate.  I want to find a way to make a difference in people's lives.  I feel that I am in a great deal of debt to the people who care for and love me.  I feel that I have had so much care and compassion shown to me that its time I pay it forward, so to speak.  I don’t know that writing a blog is the best way to do it but it's a start.  I think it is best to start close to you and then branch out from there.  Thus, I have begun to contact other people affected by Duchenne Muscular Dystrophy (DMD) and/or their families to try and help them by telling my story, giving them advice, or just listening to what they have to say.  This blog is about reaching out to the broader public.  Perhaps I can do something about the horrible misconceptions many people have about disability and the individuals who live with it..  It is time I start using this mind that I'm so grateful for.   Until next time, peace and love to you.  Kevin J