Pity? Pitied?

I remember when I was very young being taken to visit an old age home to see my great grandfather. We used to go often. Try as I might, I could not shake a feeling of pity for the people sitting in the lounge area. It was a feeling that their lives had stagnated to the point of requiring 24/7 help and being unable to look after themselves. I was totally wrong but that is how I felt.

I have no idea what they thought of us brats. I would never have stopped to ask myself such a question. Many kids do not.

When I was first diagnosed, originally with what they thought was Parkinson’s Disease, I decided to keep working full time and be open about it. Pity concerned me. I was not looking for pity or sympathy. I wanted to be judged as a high-performing individual and a partner of a big firm on my own merit.

Pity and sympathy are slightly different. Michael J. Fox said it more harshly than I would when he remarked that “Pity is just another form of abuse.” Whether it is truly a form of abuse is debatable, but I have never been a fan of it.

My last full day in the office (though it was not planned to be) I felt it profoundly. It was just before my re-diagnosis. I was walking with a cane and could not balance. After trying to rest in my private office, I asked my secretary to cancel all my meetings and organize a taxi home. I was in no state to drive or continue working.

I asked her to keep it quiet. She told people to stay back, but word got out. As one of my team and a security guard tried to help me toward the exit, I fell and smashed against the wall. Eventually they got an office chair, put me in it, and bundled me into the supply elevator. One of my team members took me home. That was about the last time I made it into the office. My condition had clearly worsened. I saw the neurologist shortly after. My diagnosis changed to PSP, and he ordered me to stop working immediately. I felt pity being directed at me that day, unmistakably.

Oddly enough, fast forward a year and a bit, and I do not feel it now. I have all the credentials for the role. I am severely disabled. I am basically wheelchair, bed, and chair bound. I am reliant on certain sanitary products, retired, terminally ill, and unable to drive. It is interesting that I still put that last one at the end of the list. Yet pity is not what I feel. That is not to say it does not exist around me. I just do not feel it.

There are three possible explanations. First, I do not feel self-pity. I do not feel sorry for myself. Second, I do not pick up on the pity of others. It does not register, as though I am somehow immune to it. Third, I genuinely do not care whether people feel pity toward me.

The third is the most interesting, and the one I want to sit with.

Some people almost certainly do feel pity. Sympathy, definitely. They feel a sense of caring and see what I am going through. But beyond that, pity implies they feel sorry for me or see me as diminished. I honestly do not know.

Because I do not carry self-pity, I seem to be insulated from the pity of others too. When I see kids in the street, I do not worry too much. We live in a small town rather than London, where growing up I saw firsthand that kids could be cruel to anyone who stood out. I should also say that I have voluntarily withdrawn myself from much of the physical world. Apart from walks, seeing family and close friends, and attending prayer services when they are held outside, I have largely retreated. Partly this is to avoid freezing episodes. If I am honest, it is also to avoid situations where too much attention is drawn to the man in the wheelchair. Call it self-preservation.

With people close to me, I feel their warmth, their kindness, and yes, an immense sadness, but I do not feel pity in it. I may be completely wrong. But I am comfortable with that ignorance because it is a kindness to myself, I have decided to keep.

There is also self-consciousness. Anyone would feel it. But here is one unexpected benefit of the wheelchair: I used to be extraordinarily clumsy. As the tallest person in the room, I once walked into a whiteboard rack mid-meeting and tore my trousers to shreds. I had to staple them back together and carry on. I used to apologize to lampposts. In a wheelchair with a carer, the opportunities for that kind of spectacular self-embarrassment are considerably reduced.

So where does all this leave me? I am left with a sense of self-esteem that has somehow persevered. It is not ego or arrogance, but something quieter. Friends still ask for my help. My opinions are still valued. I still feel a degree of purpose in my days.

My absurd humor is part of it too. I acknowledge my situation openly, and I think that takes some of the heat out of any pity directed my way. When you can see the same things others see and write about them with a straight face, it becomes harder for anyone to feel too sorry for you.

I feel good that pity has not taken hold. I carry enough already: grief, fear, and uncertainty. I do not want pity added to the weight. What lies ahead, if and when I can no longer communicate, I do not fully know. It frightens me. I think about it. But I feel increasingly sure that even then, pity will not be the thing that overwhelms me (lots of other things come to mind!). I am, on the whole and the occasional panic or burst of anger aside, calm and accepting of the situation. I am grateful I continue to have the chance to find ways to give and be with the people I love.

That feels like something worth holding onto.