Life is certainly strange. It is midnight, and I have woken up from a short sleep. I should logically be scared and riven with complete worry. I won’t go into details here, but my specific current ‘probable’ diagnosis of a Parkinson’s form of PSP is scary, to say the least, and it has not been easy in recent days. I must say loudly it is atypical of PD, so it shouldn’t be seen as the journey for people in general (just my little personal bonus).
As an aside I am probably going to retitle my blog as it is a little misleading to call it ‘Fighting Parkinson’s’ but this post is upbeat and certainly in my view relevant. I also hope the diagnosis proves wrong and it stays a milder PD – but we will see…
In reality, however, the actual fact is that my two last emotions in the last half hour before writing this have been to ROFL (Roll on the Floor Laughing) and huge annoyance at a mosquito bite.
What am I talking about?
ROFL – Two of my loved ones are abroad and got themselves into what was a very amusing (to me) situation (harmless but a little challenging). My daughter and I laughed harder than we have done for ages. I know I probably shouldn’t have done so, but I dealt with the issue, and all the while, I simply couldn’t stop laughing.
Mosquito – You know the moment when you hear the buzz and then you feel the newness of a bite. Well, even with a new prognosis that, to be frank, isn’t pretty, it absolutely becomes the focus for attention – especially when my wife has quite rightly taken the soothing cream to another country (I found the other tube).
When I think about how life actually plays out, it is not one continuous stream of pain or fear. It is lots and lots of moments, and most of them are good.
So what?
I am not trying to sugarcoat what is truly horrific news, which I still want to believe is not happening, BUT life still goes on. Today, I have had a lovely dinner with my daughter, spoken to friends on the phone and had coffee, had some interesting work meetings and financial planning discussions, and watched a movie. Yesterday, I had a whisky with my boss, shared some fond memories with colleagues and one in particular who is moving on in his career, shared amusing moments with my kids and wife, and of course, some gallows humor. Life moves on, and it is truly not all gloom and doom.
I say this with an air of authority for the first time in my life. I truly have a condition that, unfortunately, contends for a place in the Premier League top 4 positions metaphorically if there was an objective scale of truly nasty diseases. I stare down the barrel of a nightmare, but nonetheless, life still goes on.
We seem to be built (for me, with faith, it is divinely so) with an incredible coping capability to compartmentalize and move on, and I will be honest that it is truly guiding me through this.
Is it true?
I can’t speak about every minute of every day for sure, and I can’t speak of the years to come. There are, in my current life, moments of pain, depression, worry, fret, concern, and fear for sure. In every day so far, however, there have been moments of joy, amusement, contentment, and happiness, often in the little things and big things.
Big things – I had a meeting today with my financial advisor and heard some good news (for once) about the extent to which my family will be taken care of, and it filled me with pure joy. I then had a moment of panic as I thought about the things I need to do to get things in order.
Small things – There was the ROFL moment I mentioned, a really lovely dinner with my daughter where she cooked a really lovely meal for the two of us, reminiscing with friends after my post on driving, a phone call with my son, and I watched (and cried) over a movie I have not seen for a while. Beyond that, I also felt huge kindness from a number of people close and not so close to me who are looking out for us. Just the messages I got about my post on driving were simply special.
In my journey, I guess I am set to encounter some really harrowing moments, and the honest truth is that it is probably far harder for my loved ones than for me. But so far – a few days in – life goes on. I certainly don’t look forward to the coming health situation with relish, but there are really fun and good things ahead. I am going on a planned vacation with my wife, which come hell or high water (and possibly a wheelchair), I will make, a trip with my son, new beginnings in our kids’ futures (university, travels, future relationships, and exams :-)), and a hundred other things.
I simply refuse to let one thing and my condition become the center of attention to the greatest extent possible, and it is funny because life itself prevents it from happening, and I hope this continues.
Others no doubt feel different, but I truly hope and pray (and I believe) that from what I have seen so far, there will always be significant smatterings of little and hopefully bigger moments when my eye is off the bullseye that is so easy to see. I don’t know this for a fact, but I am starting to see it myself.
Life goes on, and overall, despite the enormity of the situation, it is still a wonderful world with wonderful people and yes, some less-than-wonderful elements. I can only speak about my own existence.
So a few days into a horrific prognosis and a stop to driving, I am still laughing, crying, smiling, and living. Life goes on. I am grateful to all those around me – my family, friends, colleagues, bosses, doctors, and medical professionals.
Statistics are statistics – I can’t argue with them nor ignore them. I am planning based on them for mine and my family’s future, but in terms of living life, I will keep on marching (maybe a little slower) but nonetheless marching. I can’t speak for others, and I don’t intend to minimize the pain others feel, but this is my blog, my therapy, my space, and you can choose to read it or not.
Life goes on!!
2 Responses
Ben – I cannot even begin to imagine what you are going through but your courage & joie de vivre is inspirational.
Thank you am trying to