jmgoyder

wings and things

Apr 21

“I just don’t understand you!”

by jmgoyder

Ming and I had a couple of altercations today that were impossible to resolve. This is so frustrating and painful and yet it points to the fact that we all think and feel differently and trying to match someone else’s way of doing both is impossible.

So what on earth do you do with irreconcilable differences? How does a 20-year-old son understand a 55-year-old mother who is trying to understand a 78-year-old husband? The only way, I think, is to accept the different points of view about everything, to accept each other (despite these differences), and to develop a capacity for sympathy. Empathy would be better, of course, but if the other person just cannot fit their great big size 13 feet (Ming) into your shoes, then agreeing to disagree is your best option.

I have always loved the concept of difference but I have never had it thrust in my face as much as the last few years, with Anthony’s declining health and Ming’s growing up. Neither of them understand that, at the center of this dynamic (in terms of age alone), I struggle sometimes to give them both what they need or want. And neither of them even think, unless I remind them (rather vociferously sometimes), that I might actually want to be considered too.

Perhaps love doesn’t require understanding? I am not complaining here (well maybe a bit!), or posing a feminist argument (hell, no – most of the misunderstandings I’ve experienced have been with women); I am just observing that sometimes you just have to accept the fact that you will never agree with the other person.

But you can still hug them and keep your “you are wrong!” thoughts to yourself. Ask Godfrey the gander!

Animal Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Feb 27

The advantages of having pompholyx

by jmgoyder

Sorry but I am a bit obsessed with my condition. This time I have decided to give it a positive spin.

The advantages of having pompholyx:

1. You cannot go anywhere near detergents of any type, so you are not allowed to wash dishes, clean the bathroom or do the laundry, which means someone else has to do all of these things for you. (Thank you, Ming, oh and don’t forget to vacuum the house).

2. If you have freckly hands, and you don’t like your freckly hands, you will love how, once the skin peels off, so will the freckles.

3. Exercise is not a good idea if you have pompholyx on your feet so, even if you weren’t madly exercising every day, now you don’t have to feel guilty about that.

4. It is a conversation starter. People tend to find it quite entertaining to hear about your pompholyx, and fascinated by your suppurating sores. It is, however, best to keep these show-and-tell conversations to less than 10 minutes I’ve discovered.

5. It’s good assertiveness training. For example, when people tell you to stop scratching at your hands, you can say (loudly, if you wish), “I will scratch at my hands if I want to scratch at my hands!” I have had to say this to Anthony, Ming and friends on several occasions.

6. You have learned a new word – pompholyx (which derives from the Greek for ‘bubble’ I think).

7. If someone you only vaguely know sees you at the post office and wants to give you one of those spontaneous hugs that you are not in the mood for, you can throw your hands up and say “Don’t touch me – I’m diseased – see!”

8. It’s also a good way of frightening small children who are behaving brattishly, although I haven’t tried this yet.

9. Doctors are extremely impressed with your extensive knowledge of a condition they have never heard of and they look at your hands and feet with the glee of a new discovery. This gives you the brief glow of what it must be like to be on the red carpet.

10. You discover that you have a tonne more of empathy for all who are suffering any kind of pain. This is the best advantage by far.

Ming did the washing, vacuumed the house, did the grocery shopping and saw Anthony this morning. This afternoon he has gone back to see Ants, go to a movie and then he is bringing pizza home. Wonderboy!

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Feb 26

When the carer gets sick

by jmgoyder

It is now a few weeks since I was first afflicted with pompholyx on my hands and I have now seen three doctors (well, four, if I count Dr Google) and I now have all the antibiotics, steroids and ointments I should need to get rid of it. The blisters on my hands have now been replaced with peeling, bleeding skin and I am finding it painful to do everyday, normal things like turning a tap on and off, prepare a meal and even holding the steering wheel of the car hurts. I’ve read heaps of articles about pompholyx and seen some gruesome pictures that look just like my own hands, so I feel quite knowledgeable about the condition now.

A few days ago I noticed a few blisters on my left foot too but, like an idiot, I just kept hoping they’d miraculously go away, but this morning I woke up to two very swollen feet, with all of the toes on one foot covered in sores and one on the other foot too. (I think my feet must have been scratching each other in my sleep!) The left foot was so painful that when I jumped out of bed to take a closer look, I got a shock when I could hardly walk.

My first thought was how could I take Anthony out for afternoon today? That was my plan and I had told him yesterday when I had two normal feet. As usual my incredible mother came to the rescue and visited him and I spoke to him twice on the phone, the first time quite tearfully but the second time (my mother rang me from his room at the nursing home) more cheerfully.

There are a lot of mixed opinions about pompholyx but one thing I have found in almost everything I have read about it so far is that it can be caused by excessive perspiration. This makes a lot of sense to me because, despite the fact that I have always had a problem with this during our Australian summers, it has never been as bad as this year. In fact, a few weeks ago, I joked with a friend that I might have to get botox to stop it (I had read about this treatment and this was just before the pompholyx hit me). It turns out that this may well be a necessity for me if the pompholyx doesn’t go away with all the other stuff I’m taking for it. I could get my frown lines done too – haha!

On the scale of diseases, this is certainly minor and I know many people and friends who are battling much more severe health challenges, diseases, chronic pain and, yes, grief. So I feel a bit embarrassed to be so upset about what has suddenly happened to my hands and feet, but the main reason I am so upset is because it is obviously going to stop me from seeing Ants for awhile.

Ming, who did a whole bunch of errands and other jobs for me today, said (during one of the Home and Away commercial breaks), “I’ll do anything you want me to, Mum – just give me a list!” Then we had a conversation about stress:

Ming: You must be really stressed – look at your foot!
Me: I am now twice as stressed as I was before you said I must be really stressed so shut up!
Ming: Why can’t you just have fun, Mum?
Me: I can’t really have fun with this thing with my hands and feet.
Ming: I could take you out for lunch, to the movies even – popcorn? Pizza? I’ll do anything!
Me: Could you do a load of washing, vacuum the house, wash the dishes, do the groceries, visit Dad and bring me some panadol tomorrow?
Ming: Oh – okay. That’s a lot of jobs and you haven’t given me much warning.
Me: It’s called initiative, Ming.
Ming: No, no, no – you know I hate that word!
Me: Well guess what – I hate the word stress!

The hardest thing about getting any sort of sick when you are caring for a loved one with a proper disease (Anthony) and another one who has just had a second lot of spinal surgery (Ming) and all the other people who you care for, is the feeling of utter helplessness that you can’t help because you are sick too. For me it is, hopefully, just a temporary sick but it may go on and on (pompholyx tends to do that).

Apart from the spasmodic asthma attacks that began four years ago, when I was still working at the university, Ming was still at school, and Anthony’s health was beginning to deteriorate, this is the worst diseasy thing that has happened to me. I’m a bit scared I guess because I’m the carer – I can’t get sick! I am needed!

To those bloggers and friends and relatives who know this feeling, I salute you for your courage and honesty in talking so openly about these things. My empathy has grown a thousand-fold because of this pompholyx thing.

blogging Family Friendship Parkinson's disease

70 Comments »
Mar 19

Empathy requires effort

by jmgoyder

A few thing have happened lately that have drawn my attention to the notion of empathy – that ability to identify with someone else’s suffering and to feel it too. This is not as easy as sympathy.

Okay the first thing that made me think about empathy was (as blogged previously) Ming’s inability to feel it for Anthony. Then, last night, after Ming got home from his weekend away, he was obviously unconcerned about my asthma until I said, “Why don’t you care?”

“Because I don’t know what it feels like, Mum!” he said. Ïf you want me to care, you have to tell me to; if you want my support, you have to tell me how.”

Food for thought: empathy doesn’t necessarily come naturally.

The second thing that made me think about empathy was a blogpost by a friend whose beautiful daughter died recently after years of suffering. This mother’s grief is raw and almost unbearable to read about, and my sympathy for her is enormous, but what about my empathy?

So I tried to imagine it; I tried to imagine my only child, Ming, dying and dead, but I couldn’t get my imagination to get beyond his dying to his death because it was too hard. I felt so wretched with grief I had to stop my imagination.

Food for thought: Empathy does come naturally to some and I thought I was one of those, but I’m not sure anymore whether it is possible to feel empathy (automatically) for someone who has experienced something that you haven’t.

How can 19-year-old Ming feel empathy for his 77-year-old father? Is it something that needs to be taught?

I wonder.

blogging Family Friendship Grief

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