Dare to dream

Main text originally posted into the Facebook Group November 2015, epilogue June 2016 and republished with permission

Little did I think as I lay in hospital post SCA that one day I would be sitting here today in this place writing this post.

At 4am in June 2013 I suffered an SCA whilst sleeping, my partner Dawn awoke up by sheer chance to find me face down in the pillow bathed in sweat, but quite dead, ironically the very day we were due to fly to Spain for a tennis holiday.

She turned me over onto my back and phoned an ambulance before commencing CPR.  The ambulance arrived 8 minutes later and worked on me for a further 20 minutes before my heart started and I remained unconscious in an induced coma for the following 7 days in the hospital Intensive Care Unit followed by a further two months in hospital.

When the Doctors allowed me to re-gain counciousness I was riddled with Myoclonus (involuntary muscle jerking) so I could not co-ordinate my legs, arms fingers indeed the jerking was so bad I could not hold any utensils to feed myself, walk or do anything without an involuntary spasm which was so violent on one occasion it threw me out of bed.

I was moved from Intensive Care to first a cardiac ward and then to a neurological rehab ward.  I was still bed ridden and placed in a ward with accute stroke victims who could do nothing for themselves, I was so affected by this that to this day I take prophylactic aspirin to reduce the likelihood of a severe stroke.

This did nothing for my psychological well being as I realised that this was exactly how the medical staff saw me, with the same level of dependency and likely outcome and thus my thoughts were that I was destined to live out the rest of my life stuck in a bed, being looked after and observing real life through a distant window.

In fact I distinctly remember laying in that white sterile bed under those aeseptic fluorescent strip lights listening to my fellow patients groaning in pain noting the monotonous boring tick tock activities of the daily hospital processes and crying to myself in abject self pity thinking this was my life from now on.

Oh how I longed to once again feel the small things in life like the rain on my face, the warming sun and hear the rustle of the wind in the trees, the chatter of excitable small children with huge enthusiasms for what was to come and the birds twittering as they went about their daily business.

I simply wanted more than anything to live a normal life and experience normal things with normal healthy people, but as it was I couldn’t walk, speak sensibly or even demonstrate acceptable behaviours because during my SCA I had sustained hypoxic brain injury which had affected all of these things, and now it was me that was not normal nor healthy.

I remember the feeling of being observed, spoken and tended to as if I was a little boy with no will of my own or the capacity to determine what I wanted or didn’t want.

I thought that if I couldn’t have a normal life with dignity, doing normal things, I didn’t want a life at all and I would end it.  But before I did that I had to stop listening to people telling me what I could and could not do and find out for myself what would be achievable and then re-evaluate whether life was worth living or not.

I asked a kind but bewildered visitor to find me a Zimmer frame and I got out of bed and tried to walk to the toilet so for once I could pee into a toilet and not a bottle because I wanted the dignity of urinating in a toilet like normal people do. Unfortunately for me my legs gave way and I fell and did some muscle damage, the medical staff picked me up and put me back in bed and chastised me for all the form filling they would have to do. The following day I tried again and fell again and then they then put alarms on my bed and put the cot sides up, stole my Zimmer and offered me drugs to keep me quiet.  This was a dangerous cross roads for me, a choice to give up and succumb to a drug hazed half life or carry on being a nightmare patient until I couldn’t.
So I made up my mind and disconnected the bed alarms, refused the drugs and then much later managed to acquire a wheel chair meant for pushing patients in, the ones with the little wheels.  But I discovered that if I lifted up the foot plates I could scoot along using my feet. I did bump a few things though and was told off by the ward nurses. But this wily and experienced senior ward sister gave me permission because she thought it would exercise my legs and I would scoot around with a lofty look of contempt for the nurses who had tried to have me banned.

In my wheel chair I eventually got myself outside and used to go and sit under a huge sprawling evergreen tree where I would talk to it like it was my totem or something while I watched the world go by.  I loved that tree, and still do in fact……….. it was my friend, listened to my many complaints and never criticised anything I said or did. During many subsequent hospital visits I always make a point of going to say hello to that tree and giving it a tender pat like an enduring, good, faithful and understanding friend.

i think if you have read this far you might be a little bored by now so I will synthesise the subsequent story as best as I can.

The Myoclonus gradually subsided although never completely disappeared, and both walking out and at home I have collapsed many times causing both bruising and cuts. No one seems to know why I collapse but dehydration, electrolytes and tiredness may have played a part, and I am much more careful about managing this now.  Fear of collapsing in public often prevented me from doing things but with Dawns support together with the book Freedom from Fear helped me to largely challenge that negative line of thought.

I have as a point of fact been a keen sailor most of my adult life and enjoy the beauty of the ocean and so to consider that as doddery as I was that one day I could ever sail the oceans again was slightly more than I could have dared.

Or was it ?

With Dawns support or maybe her desire for an easier life I set about planning to go off sailing and knew that in order to be able to do it I had to achieve certain objectives.

Sold a house, folded my business, got fitter and braver, adapted my expectations and then found a catamaran that I liked but the only problem was it was located on the other side of the world from England. Indeed it couldn’t be any further because it was in New Caledonia near Australia which of course involved very long flights with brief stop overs and as I detest airports and flying this could be a problem.  If I am honest I probably have some sort of phobia for airports.

Well it proved not to be a problem and I am currently sitting here on my new boat writing this post having sailed 800 miles from New Caledonia to Australia with my long suffering partner Dawn.

The trip wasn’t without issue, 400 miles from land I developed dreadful arrhythmia’s which made me feel quite unwell for a day. In the end I got rid of them by jogging on the spot for 250 steps just to bump my heart back into rhythm but this is not a strategy that I would recommend……………….it was just undertaken in desperation and it worked for me on that occasion.  Yes it frightened me at the time, it frightened Dawn as well but I had to know if I could do it and as I sit here writing this I am clearly not yet dead.

I will go and do a download of my ICD and book to see my cardiologist to see if anything shows up and obtain some advice from him which I am hoping will be constructive.

I suppose what I am trying to say is that having an SCA isn’t the end of a good life.  If you are new and reading this you may feel that this is the case……………….. but it isn’t !

We all know life is a risky business and maybe more so now but please don’t let the Nay Sayers convince you that you are better off or safer by not doing something that you think you might like to do………….. have a go……………. the worst thing that can happen is that you die trying and what an admirable epitaph that would be.

Healthy people also die trying.

I think it’s important to each of us to try and achieve something for ourselves each day.  Doesn’t have to be a big thing just do something, because doing something adds value to your own well being whether that is climbing mount Everest or growing beans in the garden.

Sometimes if you are feeling suicidal growing beans in the garden can be a personal Everest so doing it is much more than simply planting beans……… The one thing that I hear a lot on this site is people being told that they can’t do this or they shouldn’t do that.  I am not sure that not doing something makes you live longer or it just seems like it ?

Many people get old and die regretting the things they didn’t do in life and as we all have dreams and aspirations why do we allow other people to tell us not to do the things that we would like to ?

You have to have hope and you have to strive to achieve your dreams so when someone who is supposed to know better tells you that you shouldn’t or you can’t it’s because it doesn’t matter to them……………. it’s not their dream is it ?

Do you have a dream?

Epilogue

It’s now a full three years since my SCA so tomorrow it’s sort of a third birthday or third year celebration and I thought I would do an update to the above.

I did see a couple of cardiologists both of whom were supportive of my plans, although one flatly told me that if I got palpitations again I should take another beta blocker rather than jogging on the spot………. but I will probably ignore that and jog on the spot again.  Having returned to the UK we sold, donated or dumped pretty well everything we owned.  Filled in reams and reams of paper about this and that.  Dawn managed to get us a great deal on health insurance cover and armed with 12 month visa’s we flew back to Australia on the 15th April 2016.

Since then we have done a lot of work on the boat and are now nearing the end of a huge 3 month planned refit.

Early July the two of us plan to set off to sail the 500 miles to the Australian Whitsunday Islands for 3 or 4 months cruising around the Islands of the Great Barrier Reef.

After that……..well who knows ?

In truth I am still lacking all the co-ordination that I had pre SCA………still a bit doddery on my feet……..still a bit tired all the time……….and still very pig headed 

So that’s my story of my last three years since my SCA and now we are going to go out for dinner to celebrate because we can 

Thank you Dawn for performing good CPR…….. for my life, for loving me no matter what and for supporting me in all my endeavours…………… and thank you the reader for taking the time to read my story.

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