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?”
“Yes.”
“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.
Finding Peace
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.
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hi kitty.
i too have PD. I enjoyed the honesty of your writing. I especially loved the cancer comment, and think you should just say it and let them know how saying cruel things feels .. I myself have a go to line to shut people up.. yup and you could walk out the door and get ran over by a bus.. It stops their stupidity,for a moment anyway.
As for your jealousy, please remember everyone has issues and try not to compare yourself with others. It does more harm then good. At times when you find yourself getting envious tell yourself all the positive things in your life. I keep a list with me at all times.
I don’t get envious or jealous (maybe i just don’t realize that I do) What i do find is I have no patience anymore. especially for people who have what i call minor issues who constantly feel the need to whine and complain. Having a disease that you cannot always see constantly reminds me not to judge people to quickly, for there might be something else going on with them . But man that is hard. I often lose my temper and say something rude comparing their petty crying and complaining to my PD and then feel bad.
Thank you Ann, you are so right in that I have to remember I too have said tactless things at times and not realised that the things I have said are hurtful. or thoughtless. We do all have ‘something’, a little more tolerance would really be a great thing. 🙂
Thank you Kitty. My husband has PD. I hope you don’t mind me replying as a non-PD sufferer. As his carer I find myself feeling envious of my friends whose partners are healthy, who can make plans, who can go for walks, who have uninterrupted sleep, who don’t really want to hear about it and are always ‘affected’ and shocked when they see how much he’s deteriorated. I don’t look at Facebook anymore as the fabulous lives depicted there make me feel sick and jealous. They tell me to take care of myself and then go back to their own lives.
I try not to be negative but summer is nearly over and the darker days will make it harder.
Your writing reminded me how harder it must be for the person with PD. You were right to share this and I hope it helps you.
My motto since HWP’s diagnosis has been to ‘do as much as we can while we can’ and you sound as though you are doing the same. Good luck Kitty. Keep seeking your peace. I wish you well.
Thank you so much for your kind words. I’m delighted that you found it helpful, this is for everyone, it’s hard for us all. You’re right about getting out there and doing whatever you can for as long you can. It’s so hard to remain positive, but the alternative is just too horrid. It’s OK to feel envious, but it’s also important to put it into persepective and recognise it for what it is. Perhaps you should pity them. They may not be embracing life and sharing the closeness that you clearly have with your husband. As they say here in NZ – Kia Kaha – be brave. Thank you so much, love Kitty. x