We all know that Parkinson’s is cruel. However it can be cruel in the most unexpected of ways. Whilst on this unpleasant and unwanted navigation of life with Parkinson’s I have learned some occasionally uncomfortable things about myself. I am writing specifically about my lack of sympathy and concern for those around me that become ill / suffer with issues.
I know. It makes me sound like an unkind person. I feel unkind. It’s not something I like about myself, but I feel it’s something that I need to face up to. I have to deal with it somehow, make some kind of understanding with it, and beyond that, learn to find some peace so I can continue my life without resentment.
What’s the problem?
Resentment abounds when dealing with PD. There’s the obvious anger around the fact that you even have this at all, that’s a given. It’s unfair, why me etc etc. Then there’s the not so obvious anger. Anger with people that can walk, move easily and don’t even appreciate it. People that are able bodied and have no appreciation at all of their able state. Unencumbered by disease and / or impairment they can walk freely, bend and move. I’m angry with the people that talk about ‘nasty chemicals’ and ‘artificial drugs’. Don’t’ they realise without these things lots of people just wouldn’t be able to have any quality of life? My own father told me I take too many pills. I was stunned. What do you think I should do? I asked. He replied I should try to do without them, couldn’t I cut them back? I currently take fifteen or sixteen tablets a day, depending on if I’m going out or not. Without them, quite frankly I’m a bit of a wreck.
I’m angry with the people that cheerily tell me that my tablets will stop working one day. “Ah, Sinemet. Yes. That stops working after a bit, doesn’t it?” It’s up there with the cheery people who tell you that “my (insert name of family member here ” had Parkinson’s.” (They’re usually at least twenty years older than me.) “they were good at first like you, but then went downhill fast. They’re dead / incapacitated / incontinent / in a home (delete as applicable).” Why would you say that to someone? I reply “yes and you might get cancer and be dead in three months.”
(Disclaimer – I just wish I said that. But even I’m not that awful.)
The look on their face is priceless. What an awful thing to say. Yes. What is said to us is often awful. It makes me angry all over again.
Anger and sadness come with alarming regularity. Often in equal measure. It took me some t time to recognise it at first, I would feel cross but I couldn’t work out why. Then one day I was talking to a friend that had been to have an operation on their leg. “I have to do physio” they complained, “for six months!”
I hesitated. “Will you get better? You know, fully recover?”
“Oh that’s great then isn’t it? I mean, it’ll all be worth it.”
They looked perplexed. They wanted my sympathy and commiseration. Inside I was seething. I recognised the feeling but wasn’t sure how to respond. Then I realised what it was. I was jealous.
Thy Name is Envy
That day I knew what my problem with other people’s ailments was. I envied them. I envied their health, their ability to recover or be cured. That they came to me for sympathy and words of comfort for things that would not last forever, or degrade their lives in a significant way.
Then there are the just plain thoughtless. A friend of mine was telling me about another person they know who has a different condition to me. It’s not pleasant, I have sone sympathy, but it’s neither degenerative nor without good medication. They were telling me they need to take lots of medication (so do I), they suffer pain, (so do I) they had no choice but to rest often.
I can’t really comment on the last point but they were essentially telling me how awful this person’s health was with no consideration of the fact that in addition to the issues they listed above I have to deal with slowness of movement (inside my body and out), difficulty in my mobility, occasional pain. The knowledge that there is nothing I can do to stop it. The best I can do is exercise daily (ugh) in the hope I can delay / stop it.
I am not proud of these feelings. I am uncomfortable and unhappy to recognise such an ugly emotion. Yet it remains. I’m lucky enough to have a good friend (whom I don’t see nearly enough) in the very lovely Emma Kyriacou. Those regular readers will know she also has Parkinson’s. Imagine how pleased I was to learn she felt the same. Sweet relief! Perhaps I’m not a monster after all.
I don’t like these feelings but I think it’s important that I recognise them. I genuinely try my best to have more empathy and kindness towards others these days. I feel a particular, strange affinity with older people now. I find I understand them more on some level. I know what it feels like to have your health problems ignored, as if it’s somehow your fault. Those without ailments make glib statements without realising how damaging it can be to you, but in return we have to understand that once we were guilty of the same. I was once ignorant of the stupidity of some of my comments. I must try harder, be better and in some way try to be happy that they don’t know how it feels.
I must raise myself up and find my peace. It’s not easy but without it I risk becoming unkind and resenting all around me. I don’t want to be that person. I choose to be positive, supportive of others, and kinder to all. Not always easy, always a better way.
Do you feel jealous of others for their good health? What do you do to cope? Let me know in the comments below. 🙂
Until next time.