sick.note-section-header TW13

Spastic … and sh!t

I already know that my title for this post will cause some controversy. But I draw your attention back to the opening paragraphs of my blog, and I quote:

Some of the words I have written here will hurt those who matter: and for that, I am sorry.
But I cannot lie about what I feel when I write for myself.

These words record a part of my self that I wish to remember. And so I continue to write: in the hope that in time, my words will bring me to that point where everything is forgiven.

 
The bold text is added here as I wish to draw your attention to the most pertinent points.


 
 

 

I would like to start by clarifying that I am using the word “spastic” in its original medical definition. Derived from the Greek spastikos meaning “drawing in” or “tugging”, the word means:

a. Of, relating to, characterized by, or affected with or as if with spasm

b. Characterized by hypertonic muscles (the interruption of nerve feedback loops between muscle and brain)

 
As proof that I have used the word correctly in describing my condition, I submit the following video for evidence.

WARNING:
This video is NOT suitable for children; or people who are easily distressed. If you are eating at this point, I would suggest that you finish your meal first. And place a bin at hand just in case. 😉


 
 
 

 

So there you have it. This is me. Now. And that’s what this post is about.

 
A couple of weeks ago, I attended an Occupational Health appointment that my employer arranged as part of the Sickness Monitoring Process. Understandable, as I have now been off work for 18 months.

The day keeps repeating in my mind because one of my ‘episodes’ started in the taxi on the way to the appointment and didn’t stop for nearly 3 hours.

This meant that I sat in my wheelchair spasming erratically; making loud noises and being totally incapable of speech; throwing limbs and suffering a lot of pain for my troubles.

At one point, my Dad (who was acting as my escort) told the Receptionist “I need help” and they sent a Nurse out to sit with us. I was so bad, that they had her sit in on my appointment in case a medical response was needed.

Because of my incoherent state, my Dad called my wife and she answered the Occupational Health Physician’s questions over the speakerphone.

Dad and I have since spoken about how freaked out he was by my condition that day – no easy admission for a man who just “deals” with sh!t. And the experience got me thinking.

I am very much my father’s child. Sh!t happens and I deal with it… through writing; through discussions with my sisters and/or my wife; or regularly, in the privacy of my thoughts and sometimes secretly, when I am by myself.
 
 
 

 

What that day made me realise is that I have taken to hiding the full impact of my illness and just how bad it makes me feel. I don’t know when this started, but it’s got a lot to do with being bored of answering “How was your day?” with a list of all the things that went wrong with my body.

 
It’s funny, because the people I am trying to protect are the very people who have seen me at my worst. But as this situation drags on, I am beginning to fear how the way I am now, will taint the memory of me in the minds of my loved ones.

My personal introduction now goes something like this:

“Hello, my name is ‘might war’. I experience acute muscle spasms which leave me weak with stuttering gait and forward slouching posture. These convulsions build until I collapse with movements similar to an epileptic seizure crossed with Stroke, but I retain consciousness throughout. The episodes occur daily, and significantly affect my functioning.

Friends and family have taken leave or arranged to work from (my) home to ensure that there is regularly someone around to monitor and support me.

I experience facial spasms that leave my face swollen for days at a time and cause earache in both ears; daily speech and swallowing difficulty – at times I am physically unable to speak due to locked jaws (which sometimes causes breathing difficulties) and it hurts to chew.

The muscle weakness in my legs has left me pretty much housebound as I stumble due to weakness and constant dizziness when my body is in motion; and I cannot go outdoors unaccompanied.

I also experience short-term memory problems as a result of the medication I have been prescribed; joint pain in my hands, elbows, knees and ankles; considerable reduction in my coordination; sight problems (blurred sight and double vision) and sleep disturbance.

Would you be my friend?”

 
 

 

I used to be hot once. I am very afraid my wife will forget me as a sexual being. We’ve talked about it and she reassures me that this is not the case, but I can’t help worrying. I mean seriously, who would look at this example and think “Mmm, want me a piece of THAT!”?

 
We haven’t shared a bed since November 2011. The tremors and spasms become stronger the deeper I fall into sleep; causing me to shake the bed, and inadvertently elbow, punch, kick and scratch – which is no help to the one who has to go to work the next morning. And so I took to sleeping on the sofa in the living room.

Then in the third week of December 2011, the fibromyalgia kicked in with a vengeance and due to the resultant pain, I have had to sleep sitting upright!

For 10 months, I’ve been surviving on between 2 and 5 hours sleep a night – even when I take the sleeping tablets that my GP prescribed. And that’s on the nights that I am able to sleep! Insomnia is a close, personal friend of mine and we spend a lot of time together.

I have regular vomiting episodes where I throw up 2 or 3 times a day. Wifey has to have the subtitles and volume up on the TV just to cover the sound of me emptying my stomach over a couple of hours at a time.

And sometimes, I retch so hard that I wet myself!!!!!!! And I mean properly wet myself. A towel has to be placed under me until things are calm enough for me to be moved to the bathroom for a wash and a change of clothes.

Again, not attractive. I now wear Tena Lady as a precaution: and those buggers are effective! – although it does feel like I am sitting on a throne, they’re so thick. If the mattresses in the Princess & The Pea had been made of Tena, the b!tch wouldn’t have felt a thing. And would have gotten a good night’s sleep!
 
 

 

And then there are the involuntary noises. Which are loud. And I mean LOUD.

 
I had a new neighbour move in towards the end of last year. She had been there for a couple of months before we actually met: occasioned by the wind blowing her front door shut whilst she was taking the bins out. So she knocked on my door to ask if she could come through and climb over the garden fence as her backdoor was open.

Being a kindly neighbour, I said yes. As I was guiding her through my house and out into the garden, we made our introductions and she ended by asking me “Do you have a baby?” She was very confused when I replied in the negative and it took everything in my power to keep a straight face.

Because I know the reason she asked the question is because she can hear my funny noises through the (fairly thick) walls and from her end, it sounds like a bawling babe – and I was not gonna stand there explaining that it was in fact me that she had been hearing all this time.

My speech difficulties continue on a daily basis and multiple times: so much so, that I have a backlog of voice and text messages from friends and family. It’s gotten to the stage where I answer calls and when people hear me making sounds, they know that I am at least conscious and OK (even if it does freak them out a little). And there are times when I am physically unable to form words.
 
 

 

Then there are the problems with standing and walking.

 
I regularly use crutches to move around the house; and on a very good day, I am able to walk three houses down from mine before I become physically exhausted from the effort – and that takes me 1 minute 40 seconds plus.
A little disheartening since I used to be able to walk to the top of my road in no more than 4 minutes – and that was when I was strolling! I haven’t been able to walk to the top of my road since the beginning of April.

I’ve had to buy a manual wheelchair to help me get out more often. I found that I was only leaving the house to attend appointments – meaning that I wouldn’t leave the house for two weeks or more at a time. But because there is no discernible pattern to my episodes, I cannot go outside without someone being with me.

Since January 2012, my sister has been coming to my house after work every Wednesday to take me for a stroll round the block in the wheelchair. To give you an idea of how regular my episodes occur, we have managed to do this exactly 6 times since January. That’s 6 out of a possible 43 times!

We put the headphones on me when the convulsions and involuntary noises start as the music gives me something to focus on whilst my body does its thing.
 
 

 

And don’t get me started on the medical side of this whole debacle.

 
In the past year, I have been seen by a Neurologist, Occupational Therapist, Specialist Speech & Language Therapist, Clinical Specialist Neuro Physiotherapist, Rheumatologist, Professor of Neurology, Speciality Doctor in Psychiatry, Occupational Health Physician, Speciality Doctor in Oral Medicine, Consultant in Oral Medicine, Consultant Rheumatologist and a Consultant Clinical Care & Surgery (Ophthalmology). As well as a number of A&E doctors in three different hospitals.

I’ve had blood tests, a Lumbar Puncture, mouth examinations and saliva tests, CT Scans, urine tests, EEG Telemetry, lip biopsy, physical examinations, flicker tape, orange dye and blue dye eye examinations, numerous assessments and been injected with medicines whose names I can’t even pronounce, let alone spell.

I have been prescribed 13 new medications – 11 of which I am still on. These have combined to make my days a study in interesting contradictions.

The three main medications cause nausea and two of them cause vomiting: resulting in me usually having breakfast sometime between 2pm and 6pm as my stomach is unsettled for most of the day. There are weeks where I vomit at least twice a day, every day; which slows down until I’m only vomiting every other day. Basically, I’m feeling hungry all the time because I cannot retain the small amounts of food I am eating, but am not losing weight as I am not mobile enough. The medications also cause problems with my sight (blurred vision, increased REM and double vision) as well as dizziness – which occurs daily and lasts for most of the day.

Then there was the woeful experience of discovering that my body was intolerant to the Trihexyphenidyl given to treat my smaller tremors. The Neurologist was surprised that my body did not become stationary after several weeks as it’s usually used to treat the symptoms of Parkinson’s disease and should have eradicated the tremors (Yea me, for not abiding by the rules!).

On top of this, it caused urinary problems by making me want to pee more often but due to two of my other medications being muscles relaxants, my sphincter muscles do not function properly. Therefore I regularly find myself spending up to twenty minutes trying to pee and being unable to – despite the pain of a full bladder.

I have tried breathing exercises and contorted body positions, but 70% of the time, it comes down to just pushing and straining and then dealing with the resultant pain. As my body is in pain for most of the day, I just add this lot to the list. Though to be honest, I would love a day when my body is not. in. pain!
 
 

 

And that brings us up to date. I am taking things one day at a time; am grateful for days when my speech is clear enough for me to be understood by others and am using music to help keep my sanity.

 
I’ve dug up albums I haven’t played in a while and been reminiscing about where I was in my life at the time I bought them :-). I’d forgotten how delicious Maxwell is; Alanis Morissette’s “Jagged Little Pill” still smacks it; and Eddie Vedder’s voice still makes me go “YuMMY!”.

My main frustration is in not being able to do things when I need to do them and having to depend so much on others … and oh yes, the increase in short-term memory problems.

The good news is that I don’t have a tumour, bleed on the brain or a terminal disease. The bad news is that there is no easy fix for what I have and that this situation could continue indefinitely.

So there you have it. A complete introduction to this site’s resident spastic.

Again, I know that people are probably going to say that I shouldn’t use that word in describing myself, but that’s how I FEEL.
I feel drawn in and as though my body is being tugged into postures that are unnatural and certainly uncomfortable. I feel distorted.
 

 

And that’s it. I just wanted to take this opportunity to publicly admit that I am starting to really struggle with this sh!t. To honestly answer those “How are you?”/“How are you doing?” questions that well-wishers ask.

 
I’m really sorry for lying to/hiding from you guys. I know you care for me and that’s why you ask. So in the interest of honesty and full disclosure, let’s try our conversation(s) over again shall we?

You ask: “How are you?”/“How are you doing?”

And my truthful answer runs something like this:

“I miss my body. I miss her playfulness and her agility. I miss her expressiveness and sensitivity. I miss the way we danced together: the way we could take the beat and articulate everything we were feeling and thinking. I miss the sheer pleasure of movement: of exploring all the shapes that my body could cast.

I hate the way my illness covers my loved ones in ineptitude. It hurts to look in my parents’ eyes and see the shame and distress they feel at not being able to protect me from this: at not being able to do anything to make it better for me.

I fear being forgotten as a sister; as a daughter; as a friend and as a lover. Particularly being a lover. I really, really enjoyed my role as a lover: I surprised myself and the art of intimacy was a truly meritorious lesson to learn.

I fear that the current me, will cloud the me-that-was from the memories of loved ones: that I will just become the thing that needs to be cared for.

And I am tired. I am tired of the pain and the weakness: tired of fighting my physical form just to perform the simplest, commonplace tasks. I am fed up of the daily struggle to function; and of being so sensorially deprived that I am even unable to pleasure myself with my own touch!”

 
It’s a bit of a conversation stopper, right? But I just want to get it out there: because Sweet Baby Jesus, I’m feeling tested!
 
 

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AUTHOR: I am might war. I have a love of music, the written word, travel, Anime, polar bears, people and “sticking and colouring”.

77 thoughts on “Spastic … and sh!t

  1. I think you’re an incredible person and so brave for sharing this life of yours which is so hard for you to live and yet you do it so strongly with such passion and intensity. I admire you for that so much and feel humbled by your struggles. I have some struggles of my own and can relate to the feelings of invisibility and frustration that you’ve experienced. There’s a whole community of people out here who understand that and I encourage you to connect with them if you desire as they can be a source of hope and support. But you’ve really got it going on and I can only say I’m in awe of you and your ability to speak so freely and vehemently about your condition. I like the title of your post a lot and agree it’s so real that it has to be that way. Good for you is the last thing I’ll say. Good for you.
    Steve

    1. Dear Steve

      Thank you for your kind and bolstering words. It took me 549 days of being unwell before I was finally able to put pen to page about my experience. It’s come as something of a relief to be able to write about it and get the thoughts out of my head so I can get some distance. And now that I’ve started, I’m finding that I can’t stop. But I have to say, it feels good. It feels really, really good. 😀

      I may have to take you up on the suggestion of connecting with the community out here. I don’t get out much these days and finding new playmates is probably just what I need.

      I love your term “Invisible Illnesses” – somehow, it feels right. I’m looking forward to learning more about what you mean by that.

      Take care,

      might war

  2. Hey mightwar, My dear dear friend.. I miss the way you moved that butt too.. but that gorgeous sunshine smile ain’t gone nowhere.. you still have the ability to light up a room with all your love and all your faith. In those moments when you forget the pain because your mind takes you on a different journey, those moments are the key to your comfort. I need to see you more, away at the mo, see you in a few weeks, thank you for sharing your inner most xx

  3. You are so amazing and watching that was truly hard but your strength, determination and downright cussedness still shines through. I love you so much my daughter from another mother… I wish all that you wish for yourself with all my heart. One day beautiful lady, one day xxxxxxxxx

  4. Dear lovely people

    Thank you for all the comments, texts, emails and phone calls about this piece and about what it has raised for both you and me. I have been slow to respond because after drafting it, making the video (my 1st one!) and uploading it, I just needed some distance.

    Thank you for taking time out of your day to spend time with my words. And thank you for then sharing some of your own.

    Love and big hugs,

    might war 😀

  5. I finally grew balls marginally big enough to watch your ‘Fuckerty’ video and have been absolutely blown away. I can only marvel at your strength,determination and awesome sense of humour in the face of such horrendousness (please disregard the latter – adjectives fail me, there are no words to describe what you are going through and disbelief has been my general state). At the risk of sounding patronising and generally lame, I just wanted to let you know that I am thinking of and praying for you every single day. Thank you for your strength. I love you and your family. x x x

    1. Dear Marissa,

      What a lovely message to receive. I hope the video didn’t spoil your day too much. It has had a bigger impact than I had considered when I first made it. Basically, I ‘ve finally started being able to write about my illness – and it’s come at a time when I am pissed off about still being ill and my expression of my experience has been as savage as the experience has been. It’s been a wonderful relief to be able to put pen to paper – and very therapeutic.

      And don’t worry about sounding lame. This whole experience has been beyond us all. I’m just glad that you still felt that you could write your thoughts to me and I am very grateful for them. Thank you for your love and prayers.

  6. Hello, beautiful lady. Thank you for sharing all that with us. I truly hope you find a cure, and the cause of the problem. Isn’t the brain a funny, funny thing. It lets you write so beautifully, yet will also let you spasm and lose complete control of yourself. I am amazed at your fortitude and spirit. xo

    1. This illness has deepened my understanding of just how treacherously beautiful the human body and its components can be. Being able to finally write about my experience is helping me to maintain a fairly even keel. One day at a time; and one word at a time. It helps pass the long wait until the appointment date for the specialist hospital arrives.

  7. Mightwar, just found you; I think because you found me first. Oh, my dear, I thought immediately of many who could use your story and your film if only to be grateful – especially to be grateful. To me, you are a mighty warrior. I can only stand witness to your courage, your grace, your fears, and whatever else you care to share with us. Keep up the writing; we need to know you’re there.

    1. Dear huntmode,

      Thank you for your lovely and uplifting words. WordPress is helping me share my experience in ways I hadn’t considered. But mostly, it’s helping get the words out of my head and out into the open air – which is better able to contain the frustration and the anger and whatever else is besetting my thoughts. I’ll keep writing as this is fast becoming my record of the whole experience. This is me: and I am thankful for people like you – who are not so frightened by what they see that they look away.

      1. Mightwar, wrote about you in my personal journal – not for publication – you made such an impression. The difference between your film and the lucidity of your words is painful to observe from a distance, much less loving you as your family, friends and mate do. Thank you for pushing past the barriers.

  8. I now feel ashamed of my whining.
    You are very brave to have shared the video and your story.
    I can’t even start to imagine the agony you must be going through.
    May God grant you a quick recovery from it all.

    1. Dear Amira,

      Thank you for your words and your prayers. But please, do not “feel ashamed of [your] whining”. We all bear the scars of our individual experiences and the pain is real and valid for each. One’s pain is no less stinging than another’s. In my current illness, I know that I am blessed because I have friends and family who hold me through it all and remind me of the healthy life I am hoping to return to. And I am very grateful for this support as I know of many who do not have a friendly or loving hand to hold during their similar suffering. We will all face testing times in our lives and at this time, this is mine. Speaking of it is my way of dealing with the frustrations that arise out of it – just as your sharing speaks of the trials you face. And what we share, allows us to get to know each other – and ourselves – a little better. 🙂

  9. That video, let alone your words, simply left me so mortified. I mean, how does this “just happen”? Wasn’t there a stage at the beginning that the doctors knew, from experience, what would come next – and treat it? I just don’t understand how this “happened”.

    I was confused at first when you said your ‘wife’ because I thought the person in the video was female, but then I realise you must be lesbian. At the end too, when you said “I miss her body” – your body. Doh, slow me.

    I don’t think the title of this post will offend.

    God bless you. I just don’t understand, but I commend you hugely for your share.

    1. Thank you WordsFall. The doctors are still not sure what is wrong and my Neurologist described my illness as “very complex”. At the moment, they think I have a “Functional Movement Disorder” and I have been referred to the National Hospital and am awaiting an appointment date. It’s just one of those intriguing conundrums.

      Your comments about the gender confusion made me giggle as in order to write about my experience, I’ve had to out myself.

      1. Ah, good for you outing yourself 🙂 I just happened to pick it up, & wondered was it yourself writing, or a ‘you’ writing on behalf of someone.

        I’ve read here in Australia about cheerleaders who got some kind of weirdness where they experienced spasms. I really wonder what is happening for clearly humans are not meant to be rendered to such a condition – well, I mean any animal.

        I wonder if it’s our food at ALL. I wonder. Have you considered that? I’m no vegetarian, but I do know weird stuff goes down with processing food these days, and truly, I would want to look into that. What if you had a basic diet for a long while.

        I’m sorry, I am not, NOT a doctor, but I have become suss about the food we’re consuming these days.

        My sincerest best wishes for you. MightWar, you are wonderfully strong.

  10. You. Are. F*cking. AWESOME!

    I haven’t outed myself. Yet. I don’t have any illnesses that keep me from doing anything I want to do. And still sometimes I get lost in how “complicated” and “difficult” things seem to be. I need to come to your blog and get to know you through your words, so maybe I can get to know me. Really. Warts and all – figuratively speaking.

    I loved what I read before I “met” you in this post – and I’m going right back to reading now. THANK YOU for being you.

    1. Dear Zen Archeress,

      Thank you for your opening line. It was a lovely and invigorating greeting when I signed in this afternoon with fogged thoughts, losing time, sight available only in the right eye and my coordination slow and groggy.
      Your greeting made me smile and reminded me that there was another state I could be – even if I am not feeling it at this specific time. Thank you.

      Ah, the “complicated” and the “difficult” – the things that make living this life such an intriguing experience. As you set out so “I can get to know me”, I can only offer this advice: Take Time With Yourself.
      There is no rush to discover all and/or fix anything/everything. Take time, and take things a little at a time: after all, the role of Wonder Woman/Superman has already been taken.

      I wish you the very best of yourself on your journey.

      might war

  11. Maybe they could cut out all the meds and begin all over again?
    Sometimes it seems like life should include a Do over button. But then again — you have a brilliant mind, and you wouldn’t want to lose that.

    1. Hello Touch2Touch,
      The good news is that the specialist doctor reduced some of the medications this week so hopefully in a few weeks time, my processing should be less foggy. Maybe.

      And you’re right, I’d like to keep the mind I have as it’s storing some pretty amazing memories! 🙂

  12. Tough life, I can relate to you a lot, I had a motorbike accident in 89 which I broke my back, I am left with weak limbs and spasms in my arms and hands makes it difficult to send a text sometimes with interesting results lol. I also hav fibro and arthritis. Like you I have a complete change of the way I live, work and commumicate as its becomes very difficult to hold a conversation when it feels like my limbs are being ripped off, as for short time memory, I got lost in a village while driving 30 minutes later I escaped =) Thanks for visiting and the comment. Take care, God bless, Pete

    1. Wow Pete, you broke your back? I can’t begin to image that level of pain. As you’ll understand, the change of life is necessary, but I’m still struggling to adjust to the quality of life this then presents.

      1. I some days have a ‘whoa is me, poor me’ days and want the pain to go away and let me be normal, I then slap myself and tell myself to stop being so selfish and there are people more worse off then me and I get on with it lol
        I have had to change my whole life, from how I sit to how I use the bathroom as I have a lot of nerve damage doing stuff is difficult, even typing out this message I have to concentrate or I miss the keys and it looks like an explosion in a letter factory, also the nerve to my colon, and the muscles that allows me to bear down to move my bowels is also damage so it means laxatives and wishful thinking lol.
        To see me I look perfectly fine and then they are surprised to see me work with sticks or frame, you should see their faces.
        You take keep in touch and look foward. =)

        Pete

  13. Hi Mightwar,

    Thanks for the visit to my blog. I also thank you for sharing your world with us. I don’t know what else to say and so as not to waste space here, I want you to know that I hope you’ll continue sharing what life is teaching you from your experiences with the rest of us. Honesty is the best way to blog I think and you’re doing mighty fine in that department.

    Warmest regards,
    Mary

    1. Hello Mary, and thank you for your visit and your comment.

      It’s taken me a while to figure out how to speak about my illness, but blogging has provided me with a new form of expression. I’m still stumbling over the words, but I’ve decided to do a series about functional movement disorders as a means of sharing my experience. Here’s to starting the conversation.

  14. Very powerful writing, my beautiful friend. How our lives can change, a chance encounter, accident or illness here – a bad gene there. Keep fighting the fight and remember you have many people who love you. xxx

  15. Love ya mightwar.
    As ever, your writing is articulate and powerful.
    Conveying your daily frustrations and the struggle to be seen as you and not the sum of all your various conditions.
    It’s so well put and your voice comes through loud and clear, just like you were saying it to me across the living room in Brinkburn Ave.

    Keep posting Hun, it’s great.

    Lainey
    Xx

  16. mightwar, mightwar mightwar………… what can I say……….. where do I begin! I almost don’t have the words to describe ALL what I want to say, and I can barely type through my tears……!!! You wanted to know if your post was POWERFUL……. Sista Sledge…… it TOTALLY FLOORED this old Queen……..!

    I am millions of miles away (living overseas) and ALL I WANT TO IS HUG YOU till at least one of us turns blue – and given both of our skin tones – that’s a lot of HUGGING!!! I knew you were ill, the last time I saw you at Trevor’s garden party you told me some of what you were going through, but that was clearly in the early stages (back in 2011 – I think) and I honestly had NO IDEA your condition had escalated to this level.

    Knowing you, I know that you’d never want my pity……. and that is not what I feel………. but your video was heart-breaking to watch…….., really heart-breaking, it hurt so much to see such a vibrant friend struck down in such a cruel way!!!!!!!

    And yet the strength of your character shines through your words in the same way it always did! PLEASE REMEMBER THAT……….!!!

    I honestly don’t know how you find the courage…… but clearly you do, and I am so grateful that in all of your physical pain…… your mind is still sharp, focused, direct and to the point! And I thank you for being brave and honest, for having the courage to share rather than hide – and to let myself and others (who love you from afar) know exactly what your life has become! I am sure that YATTA would feel the same!

    As an old friend of almost twenty years (going back as far as Uni days)…… I feel utterly ashamed that I didn’t know about your daily struggles! And really, it makes me wonder what on EARTH I COULD DO TO HELP YOU………..??? Something I guess every reader of your piece, will hear themselves saying! On a practical level I am not even in UK anymore, so I can’t do anything for you physically…… so that begs the question…….. WHAT – THE HELL – CAN I DO………???? Well I can give you this…….!!!

    Memories……..!!! You said…..,

    ““I miss my body. I miss her playfulness and her agility. I miss her expressiveness and sensitivity. I miss the way we danced together: the way we could take the beat and articulate everything we were feeling and thinking. I miss the sheer pleasure of movement: of exploring all the shapes that my body could cast.”

    That is the MIGHTWAR I remember, all of us dancing like demons in the questionable nightspots of Newcastle with Trevor B – on the decks…….. BUKI, CYNTHIA & YATTA D. All of us winding and grinding and living life to the max! And all the while, knowing that is was all just a transitionary phase of our lives – and all the while looking forward to the time when LIFE (in the big bad world) would really start.

  17. Oops, technology…… bit of a blip there!

    But wanted to finish by saying that you had said that…..,

    “I fear that the current me, will cloud the me-that-was from the memories of loved ones: that I will just become the thing that needs to be cared for.”

    IT WON’T……… I will always remember US as we were then….. because that is the beauty of a shared history……!!!

    I loved you then, and I love you NOW……. in whatever form I find you! And that will NEVER CHANGE!

    Live in HOPE SISTA SLEDGE……. that one day we will both DANCE AGAIN……!!! And I’ll have drinks ordered and waiting on the bar for when we are done…… showing them….. HOW IT’S DONE…..!!!

    Love & Light Always, Beautiful friend,

    Always in my heart – though thousands of miles apart!

    Love,

    Dx.

    1. Dear D,

      I cried reading your comment. Yeah, those memories are still there. Can you believe that it’s been nearly twenty years already? Man, we showed them how it’s done up there in Newcastle!!

      In reply to the question “What can I do?” well … there isn’t much that anyone can do really. Except be who they’ve always been to me. Trying to get and keep normalcy in my life is what makes the greatest difference. Hearing me out despite the pain that it causes you, is also good too.

      I hope that the post didn’t spoil your day too much. I couldn’t warn you as I needed to gauge people’s first reactions to it.

      P.S.: I’d like to take you up on that offer of a drink. Next time you’re in town, give me the heads up and we’ll see if we can’t clear a space on the dancefloor for my wheelchair. 🙂

  18. Hey beautiful,
    I have been putting off reading this as the thought of such a lovely woman in so much pain is just too much to deal with…how selfish is that? I am not able to watch the video.

    It’s a beautifully written piece, that perfectly conveys what is going on in your world right now. I am amazed and crushed by what you, your wife, sisters, parents and friends are having to deal with and I wish I could take it all away. I pray you will be completely cured and back to the vibrant, energetic, healthy person you were and in the meantime, thankyou for sharing your experiences with us. Your wit, beauty and intellect will always shine through.

    Continue to enjoy your music and writing and know that you are loved and respected.

    NUFF, NUFF love always.
    Laura, Iyare, Lyra and Luke xxxx.

    1. Dear Laura,

      There are days that I share your ‘selfishness’. 😉 But the thing about this whole misadventure is knowing that I don’t have to bear it alone. I am blessed with friends and family who allow me to share my experience – however I am able. And that realization comforts me beyond words.

  19. There. are. no. words. Little One. I have no words to describe the heartache, no words to describe the loss we have all experienced, no words to describe the amount of pain that’s inside me. If I were you I could probably find the those words eh? Just know my dear, sweet darling that there are also no words that can describe, or measure, the amount of pure, unadulterated love I have for you. I PROMISE WITH ALL OF ME THAT YOU ARE MINE FOR ALL TIME.

    Zelda

    1. And knowing that we have each other Zelda, makes all else bearable. I thank God for you: with every breath in my body, I thank God for you. Even as I sleep …

  20. The human body is so mind boggling; to think we will never really understand why it does the things it does or how?! Yet for the mind to remain so focused behind all the chaos is amazing and terrifying. I’m really happy that you commented on my blog so I could find yours. Thank you for sharing your story and thank you for your exceptional way with words (NO WONDER YOU WENT TO ASKE’S – UGH). I just think wordpress is a fantastic pool of individuality. I think I wouldn’t have known anything about this if you hadn’t shown me – now i’m going to share it. It may not have been your goal for me to do so but i intend to – awareness and perhaps support can help future research. I went to review a film early this year called ‘I am Breathing’. It opened the floor for more discussion on Motor Neuron Disease; it wasn’t preachy it was funny, and the main contributor was so matter of fact but poignant and it was kind of an open letter to his baby boy and the audience. Its what your short film reminded me of. You’re so frank, honest and engaging. Thank you.

    1. Dear TrashBash,

      Thank you for your comment. I agree with your point about WordPress – it has introduced me to whole new worlds too. I am happy for you to share the information. Initially, I wrote about my experience as a way of helping me contain the feelings it raised. Now, it seems important to show the experience so that others can have better understanding of what it is and how it can be. I don’t know if I can achieve this, but I find myself needing to try.

      The film you mention sounds intriguing and I’m gonna check it out. Have you seen ‘Inside I’m Dancing’?

  21. Finally I write. Finally I get the time, courage, a computer, quiet space and chocolate at my side to write to you. I long to see you, to talk to you. I long for you to meet my son. A child who deserves a few hundred renditions of “the colours of my life” or at least the campfire requests we know so well. Your work on this site is profound. I always knew you had it in you – the writing thing. But my, my, woman you’re going for it now. Do I need to buy a new hat for the Awards ceremony? Imagine. Two girls who sang and tap danced their way through University. Look at us now hun. Who’d have thought. Priceless. Beautiful and spontaneous.

    1. Dear Boo,

      It may be well past time for me to invite myself over (again). It has been too long and I miss you still. It would give me great joy to meet the adorable fruit of your loins (I’ve been cheering the news to others I’m still in contact with from university days. Richie says “Hi” by the way). And I was listening to “I Like Your Style” earlier this evening.

      This site has been a revelation and an unexpected outlet. A wonderful way to work through the frustrations of this illness as it ravages my life. But I’m still standing in spirit – I’m stubborn like that. The hat may have to wait, but it feels good to get the words out.

      Send my love and big hugs to the family. And give them a heads up: Time to get the prescriptions topped up methinks – I feel a road trip coming on. 😀

  22. MightWar–thank you for the like of my ‘monument,’ but it is you who is monumental in strength. The video was a mind blower. Continued wishes for health and healing. God bless.

    1. Dear loisajay,

      Thank you for coming to visit. Yeah, the video can be a bit much when you’re not expecting it (it still makes me a little tearful whenever I watch it). Hope it didn’t ruin your day too much.

      Thank you for your well wishes and all the best to you as well.

      Take care now,

      might war.

  23. What a very indepth biography or about page. I too suffer from spastic diplegia. I suffered two brain hemmorages three days after I was born. One very serious on the left side of my brain and one less serious on the right side. I had epilepsy when I was younger and with that came petite mal epileptic seizures. I have since grown out of it but I have a ventrapernicular shunt in my brain that regulates the spinal fluid so I don’t hemmorage again. I do not deal with everything you do, though one of the other things about me is I had cryotherapy. Had I not, I would be blind.

    My hats off to you my friend. Feel free to follow my blog or drop me a comment

    1. Hello Meredith and welcome.

      That’s so much for such a little body to endure – it must have worried your parents so.

      I’ll be popping over your way from time to time to get to know you more.

      1. Be my guest 🙂 I still deal with it daily but I’m 23 and much stronger now

  24. Found your blog thanks to you being Freshly Pressed, but I’ve been here for an hour now reading all about you and learning about what you’re living through. Your spirit, resiliency and strength shine through, as does your beautiful soul.

    Please keep sharing your story. You are incredible, and I admire you so much for baring your soul, sharing your vulnerability and your struggle with friends, family and strangers alike. May we all be as honest and as courageous as you are.

    PS – When I first read your Freshly Pressed article, I thought it was written from a male perspective. When I read on and realized you are gay, I liked you even more. (I’m a lesbian too). 🙂

    1. Hello Lindsay,

      And welcome to MightWar. Thank you for your generous compliments. I’ve found the blog to be a great outlet for the frustrations that have arisen out of my illness. However, I didn’t expect the response that I have received from this post. It’s kinda thrown me for a loop.

      And don’t worry, most people have taken me for a male too. I’ll have to correct that in the follow-up post.

      Take care of yourself now,

      might war

  25. I hear you! I’ve lived as a ‘spastic’ (Cerebral Palsy) for 49 years. It effects my speech, my balance, my coordination. Not being able to communicate through speech is so frustrating, it drives me mad because we are so conditioned as human beings to connect through the spoken word! I’m tired too but my husband (I guess he kind of knew what he was getting into when we met, although the ageing process has taken us both by surprise!) and son are my life and I’m just not ready to give up yet! I enjoyed your honesty which is quite brutal at times yet I can’t feel sorry or bad for you. This is our life, it’s who we are and although I hate it sometimes, especially as I get older and life gets so much harder, I have no regrets. I don’t think other people can fully comprehend our lives and the chronic pain or constant challenges we experience but – not truly. I guess all we can do is keep writing. 🙂

  26. I totally understand what it’s like to miss your body. I have Functional Movement Disorder also. I have like every symptom mentioned at http://www.neurosymptoms.org regarding FMD.
    It’s really hard for me to answer the question, “How am I doing?” because it’s always so loaded with emotions. Either I’m angry that I have lost some daily function, or nostalgic of what I used to be able to do that I see others doing, or just sad about my current situation. And it’s awkward to answer truthfully if you aren’t sure how they will react to this loaded, emotional response.

    I’m really enjoying your blog. You should follow mine, it’s called Functional Phenomena. I’m so sorry all this happening to you, but don’t lose hope. Always have hope. Even when it sucks and it’s hard to go on. Peace be with you. ❤

    1. Hello Hayley, I hear you. Spastic .. and sh!t was my attempt at conveying the difficulties of answering the “How are you?” question. There are weeks at a time when it is easier to just answer “fine” and be done with it. I was sick for nearly three years before I met anyone with this condition and it was such a relief to see my symptoms on another body; because then I finally had evidence that it wasn’t just me.

      I’ll be coming over to check out your blog – it’s always nice to see how others are dealing with this shit. And I’m with you on the subject of hope. As far as I’m concerned, my current predicament is not acceptable. I’m looking for a better balance. I don’t mind being sick for the rest of my life, but I want some of my life back.

  27. There is not much I can add to the conversation here except, Wow! I am anti pharma and mostly anti medical profession so I won’t even go there. I just hope one day very soon you awaken from this nightmare of pain and loss of body and become one with the very interesting mind that I see presented here!

    1. Thank you Emilio. Unfortunately I am currently dependent on a collection of medications to function as my body is in too much pain to heal otherwise. But in time, I’m using physiotherapy to try and strengthen my body and work towards lesser dependency and improved health. One day at a time.

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