Diagnosis: A positive look at life from the edge

Life is rarely boring, and quite frankly, it seems death is neither. It may sound flippant, but a few short weeks ago I was diagnosed with what “appears to be” a rare and fatal disease called PSP (Progressive Supranuclear Palsy). Although probable, I suppose the comfort (in an ironic way) is that the alternative is a very aggressive form of its big cousin, Parkinson’s Disease, which I was originally diagnosed with five years ago.

PSP (a very little known neurological disease often seen as a variant of Parkinson’s) is possibly one of the “truly I don’t want that” diseases. It presents in its final stages as a toxic combination of elements of Parkinson’s and Alzheimer’s, and the life expectancy is seemingly low (very low). Awareness, even in the medical community, is very low, which makes it so much harder and I aim to do my best to change that.

I am coming up to my 50th birthday and have, on doctors’ orders, effectively wound up or at least am rapidly winding down a career as a partner in a big consulting firm, and have had to give up driving, something I loved. I thought I had so much to look forward to given that I “objectively” have the best wife and three kids (two adults and a teenager) in the world, but as we always say, “Man plans and God laughs.”

Yet, despite it all, in many ways it truly has been a strangely peaceful, calm and inspiring journey. My family and I were hit hard, but as I write this, I have had the nicest two days away with one of my kids and we have hardly talked about PSP. Things are a bit different – I walk with a cane/stick and have had to change plans to take it much easier. It has had huge positives. For example, we were both happy in the shopping mall that she could run around with my credit card and I could sit in a coffee shop, something I wouldn’t have previously been allowed to do 🙂

Seriously though…I am very disappointed that I probably won’t get to see the futures of my family at least from this vantage point, and I am none too thrilled about the likely pain and suffering to come, but I am immensely happy and content with what life has given me despite lots of trauma and this. I have a wonderful family who I am pleased to say are materially provided for, the kids have and are developing to be exactly what I wanted – better than me – and what is best is they have each chosen a different direction, ones that they want. I have had a great career and am very satisfied that I have worked very hard (probably far too hard at times) and have therefore been able to both make sure they are cared for and that as a religious Jew I believe I have worked ethically, responsibly and with integrity and hopefully left more positives than the opposite.

I have believed in God and been committed to religious life since I was 11 but I have been through different versions: from an intolerant, self centered, black and white teenager to a person traveling the world wearing a kippa and keeping kosher in many, many places in the world with many stories including cooking salmon with an iron and in a trouser press, eating curry with a shoehorn and bizarrely giving a lecture with a kippa to pork butchers in Germany. In recent times, largely inspired by a combination of the thinking of leaders like the late Rabbi Sacks, my own maturing, and seeing the way our sons (my son included) defended our country on October 7th, I believe more passionately than ever in God and the need for what He clearly wanted – a united people, a respect for all, a force for the good of the world and loving kindness alongside rituals that are there to reinforce our bond with God and with each other. I have come to distrust those using religion (of all faiths, including ours) as a weapon of power and control and not of love and kindness.

I don’t quite know how God above will judge me – there is a lot on the negative side which is there – but I believe that I am here for a reason and as a result am going to fight like crazy to fight the disease, to enjoy a high quality of life and to continue to bring meaning to my life, hopefully by raising awareness of my disease (you can read about the campaign coming soon on my blog. The words of Viktor Frankl after spending time in Auschwitz are proving true to me: “Everything can be taken from a man but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.” I choose to fight and continue trying to maximize every opportunity I have.

My message at this juncture in life is that, despite the huge changes and possibly partly as a result of them, I am more satisfied and at ease with the world and my faith than at any point I recall. I have briefly wondered what being given a terminal short-term diagnosis would look like – it is very, very different from what I expected.

Other people will, of course, have different journeys and mine has hopefully a long way to play out, but for me, this is a very life-affirming discovery.