Blown away, a little embarrassed and grateful

I had no idea before today started that I would create a monster. It certainly wasn’t the plan, but it seems that way. It is embarrassing on so many levels, but I am truly touched, grateful, strengthened, and humbled.

I debated with myself whether to blog on the topic of my new diagnosis. On the one hand, I didn’t want people to know for obvious reasons. It is a prize I won at the summer fete – it is a booby prize of colossal proportions. Also why make a fuss? I trust in G-d 150% and know that there is somewhere and somehow a reason for this, and it is way above my pay grade, and I have no right to know why. I do not feel happy or pleased with this gift – I want to bury my head into a pillow and wish it away. It is truly horrific, and every time I think about it, it hurts but I am not the first or last and many people face similar or worse challenges every day. In that I am not in any way unique.

On the other hand, why hide it? It is the reality (probably as it remains a non-100% diagnosis, and I hope and pray that it turns into simply a case of what seemed like very aggressive Parkinson’s Disease – which in itself is enough to scare anyone, anytime). There are three other reasons why I wanted to be open about it…

1. Selfishly, it helps me to deal with it – I am not a secrets person and don’t want to feel like I have to hide in the shadows and emerge when I am beyond the point of being able to explain it. It is the control freak in me to an extent, wanting to control the narrative, even of this.
2. It is much better, I believe, for the family – I know it is harder initially, but it is much healthier to have it on the table and not pretend and hide. Our kids are adults and in their late teenage years – they deserve the respect I feel for them (they are better than me truly – all three of them) and should be part of the process as, to be honest, I truly believe it is harder for my wife and them than for me.
3. I do think that some people will benefit from me laying this out – it gives people important information about a journey I am sadly not the only one making, and I think it shows that, as I said this morning, life goes on.

So it was a debate, but I decided that I had to be open…

I am, however, shocked by the response today. Calls, WhatsApps, visits, posts, shopping, offers to study with me, colleagues helping, smoothies, groups formed saying prayers, people doing insane things like one truly awesome friend making a plan to book a ticket to come here instead of going to his annual pilgrimage at a certain European cultural event (:-)). It is all a bit overwhelming.

Seeing a WhatsApp message announcing a schedule of prayers/Psalms for your health is not something I ever wanted to see (and sadly, it is not the first or second time for me). It is a little seemingly over the top for a person who at heart is a shy Brit.

It is also truly heartwarming to see such kindness, and I am truly grateful. More than that, it helps fire me up for the fight. I know that defeating the disease is simply not going to happen, but prolonging it, making it a part of my and my family’s life and not the center, leaving my family well-placed for the future, enjoying the times to come, and a host of other things are my fight.

I also want to be a giver. I have never been a taker. I can’t drive, I can’t do many of the things I used to do, but if I can inspire one person and help my family for now and the future, I feel I am still giving.

So…the fight of a lifetime is on, and I hope and pray that the prayers and thoughts of people will help me and others. I just want to say thank you, but I do want to add one thing I have said in previous posts.

I am a logical person who, whilst I truly want the best-case outcome, I plan on a worst-case basis in terms of making preparations for my family, for myself, and for our expectations. I would prefer to be pleasantly surprised than disappointed. This is neither right nor wrong – it is just me, and I am not going to change this late into the game.

So please don’t be surprised if I dismiss comments such as “it could be worse,” “you could have had an accident tomorrow anyway,” or “be positive” – It is a terrible situation, and I acknowledge that for me and my family, but I will fight like hell for them and me to emerge as strongly as possible.

With all my love and gratitude (and a little bit humbled and yes, a little embarrassed)…but thankful

And by the way, I’m also absolutely fine and I’m l much more naturally comfortable with just quiet support and silent thoughts truly