I have explained before about how deaths like Yasmina's can hit you like a brick & never leave you then get you to reflect on what you are doing with your life, don't waste it is the constant message I tell myself. but being told after 40 years of excellent health that your life as you know it is no more is the strangest thing. When I meet fellow heart patients on this journey we will share experiences as we all do and it helps to know you are not the only one. It is not always negative I find many are funny but always the shock forms part of it.
I forget how my body felt pre diagnosis. I have forgotten what it feels like to sleep consistently through the night. I have forgotten what it is like to not wake with headache or to sit in meetings at work and not absolutely lose concentration. This is mine & Lorna's life now. We have just learned how to manage our life to accommodate the symptoms & the hilarious 1st question of day of "how you feeling" to each other is followed by a rundown of the checklist of symptoms.
The biggest thing is it makes me more emotional, I tell everybody I love them if I do, I hug everybody I want to and I don't care. I tell everybody what they mean to me like Kay, Jean, Rob, Sam, Tania or Caroline this week and it nearly always makes me tear up.
So when I see donations to my Gofundme http://www.gofundme.com/dkgxkc6s I genuinely am overwhelmed with emotion, when I see another 100 names just this week on my Facebook page www.facebook.com/johnscycle950 I want to thank them all. So please ask to meet me on route like Tracy, Sarah Jayne & Liana have because I will love to meet you for a selfie.
So when I am asked why am I doing this it isn't an assured spontaneity idea like most of my decisions, it is I know what make me happy and for 8 years my life has been building towards this and please believe me I love everyone of you for reading this and your messages will make me tear up but I don't care because I am just happy I woke this morning to write this and many of you fellow patients understand that.
Thank you
I look forward to reading your posts as you cycle from 'end to end'...! Your messages of strength will touch so many people!
ReplyDeleteLiving with heart failure: now there's a thought...!
ReplyDeleteI guess for a lot of people the words 'heart failure' don't exactly amount to 'living'. More like the opposite, if the truth be known. For example, I just received my new ICD 'ID card' and if you read the list of cardiac conditions I have to qualify for such a device, then you might think: 'How does this guy actually make it out of his front door in the mornings?' (For those not in the know a pacemaker / ICD is your best electronic friend. The ultimate app...)
So, failing is not what it's all about. Yes, your heart is not getting the best grades in its 'Highers' but it's still doing its stuff. With a little help from randomly brilliant cardiologists, medical professionals, assorted amazing friends and colleagues, plus a dash of stunningly supportive family members - yes, your 'failing' heart can achieve many miracles.
Unbeknown to me, I've had heart failure all my life. Two major surgeries and one magic implant later and I'm getting used to it. But enlighten me here: is what follows 'failing'...? Now I bask in the company of others; I no longer compete verbally with them, but love to hear all their stories, struggles and dreams. If I see someone do a good thing or just be awesome in some way, I tell them. I appreciate and acknowledge so much that is offered to me by others. And all around I see the signs and evidence of joy. Not euphoric, over-the-top raving, but simple, humble delight in living.
Now about this guy John. Hereby hangs a tale... Look at this guy and what do we see? Well, he's a combination of a few things: a father, a partner, a manger, a supporter, a relater, a provider of humour and solace. And then beyond all this, he chooses to be a warrior and stand in the way of all that his own stack of heart conditions can throw at him.
He rides that bike of his every day. He faces down his fears every day. He will ride from end to end of our nation just for us, all of us, whatever our condition or situation. When he begins this incredible journey he will ride out of suffering and into legend. But if asked the question 'why' he will mostly likely say 'to give courage to others - and for Scotland and all that she represents...'
He will do this for you and me. He will do it because he knows he has the strength and grit to do this.
This is not heart failure. This is living...
Another thing that comes to mind in this discussion about 'living' with heart failure is the unexpected changes that can be experienced because of it. Some examples of change can be: diet, exercise, work habits and getting used to the new world of medications.
ReplyDeleteBut there are other, more subtle changes. One is the way we view, respond and react to the life we live. We could, for example, hide away and become very reclusive. Due to the sometimes debilitating nature of heart failure, this choice is occasionally forced upon some of us.
With me, this 'change of view' is my response to a particular challenge I think about most days. It became clear after a conversation I had with my cardiologist a couple of years ago. We've known each other for twenty years now and - true 'Brit' that he is - he can now finally address me as Rob...! As a consequence of this confidence, I cut to the chase and asked him: 'OK then Doc - how will it probably end for me...?' His response was instantly forthcoming: 'Either a slow decline, or a heart attack or sudden cardiac death (the dreaded SCD!)'
There I had it. Plain and simple. It was the last of the three, however, that completely occupied my mind for weeks afterwards. But gradually the threat of SCD coalesced, changed, into something very powerful: 'If there is a chance that the end could come 'like a thief in the night' then what the hell am I doing repressing my feelings, words and actions? Why am I 'behaving well' to fit in all the time? Why have I put my wild dreams in the attic?
John talks about End2End as one of his dreams. He is the living example of 'being the change'. His cycle marathon is a rallying call to all of us - heart failure-types or no - who have folded our hopes and dreams away for a rainy day that may never come...
He thus deserves our support in any way we can express it.