Seeing beyond the chair

A wheelchair is a strange thing.  It is a chair that allows a person like me to get around, but it carries so many additional connotations for the people who see it and for those who use it.

As a patient with PSP (Progressive Supranuclear Palsy), I have gone in under twelve months from running 5k to needing a cane, then a walker to get around outside, then an electric wheelchair, and finally a manual chair. I used it outside for the first time yesterday, and I am learning fast to adapt. Inside the home, I use a walker or chair depending on my strength, but the wheelchair is starting to assert itself.

Members of the public and those who don’t know you treat you differently – part pity, part kindness, and part nuisance. Family and friends see grief, sadness, and possibly pity. They see the additional challenges life has brought to them and to the user, and they see beyond the chair to the person sitting in it – seeing them for who they are, tinged with the sadness I mention.

As a person using the chair, I see a lot of the above in the looks of other people and feel many of the same emotions – the sadness at the speed of the disease’s onset, the prognosis (not good), and the difference a few months make. Less than a year ago, I was a jet-setting partner of a Big 4 firm.

Yet, in my personal view, the most important thing is how you see yourself and how that projects to others. I remain happy at heart and grateful for the many blessings G‑d has given me. I am grateful to have such a wonderful family and to have had such a great career. It goes without saying that I am not happy to be in this position, but it is the challenge that G‑d has set for me, and I have to make every effort to do my very best – and remain as positive as it is possible to be. That includes recognising that ultimately there is good in everything, even if I don’t see it.

Thankfully, I’ve been able to publish two books in my retirement mode as my cognition is currently not impeded (PSP has the same tau protein as Alzheimer’s, so most patients suffer from dementia symptoms). I have written on faith (My 10 Moments of Faith) and on PSP (Weathering the Storm – Living Fully with PSP), and I share my thoughts on my blog at www.benlazpsp.com and here.

This may sound self-interested, but as I head down the decline phase of life – albeit at 50 – I urge people to see the person in the chair and not the chair. More than that, it is likely that the person is dealing with unbelievable challenges, changes, and frustrations, and they should be seen for the lifetime contributions they have made and not just for the current difficulties they face.

I may have made similar judgements in my time as an able-bodied person, for which I now obviously walk back. No longer would I dream of doing things that I probably used to do, such as dismiss a person or pity a person because of disability, or even more annoyingly block disabled access points so I could run and get a coffee.