Sunday, 4 November 2018

The problem with saying: ''I know just how you feel.''..........

(My son has always been fascinated by sound; any kind of sound.)

There is a light, cool, breeze sweeping through the hospital food court every time the sliding doors open. I'm sitting at a functional-attached-to-the floor plastic table, I'm there and aware, yet not present.
A variety of smells waft through the air; curry, hot chips, coffee, stir-fry; with the occasional tinge of some kind of disinfectant.
Tempting as the aroma of coffee is, I am not yet ready for another coffee as I am still buzzing from the two I consumed earlier, so, luke warm water it is. Although I am surrounded by people coming and going, I barely notice them because my mind is elsewhere. My mind is busy hammering away at my little ''grey's'', my soul is groaning, and my heart is trying its best to stay intact. 
(Truth be told, lately I have had to pull out a fair few meters of ''gaffa tape'' to prevent my heart from breaking apart.)
Hospitals, whether I am sitting in a food court or a waiting room, make me feel uncomfortable, which I tend to put down to the fact that the last time I saw my beloved brother alive, was through a hospital window. And now, this very moment, here I am, in a hospital food court, waiting for my son to have yet another MRI done.
A few years ago my son was diagnosed with an incurable disease, a nasty one which involves tumors growing on nerve endings all through his body. Although the tumors are classified as benign and not malignant, when they grow inside the skull and along the spine, believe me, they are still able to cause a lot of pain and suffering. The experts are bewildered, one minute there's talk about surgery, and a date for the surgery is set only for it to be cancelled a few days before the due date. 
More MRI's and scans are done. Meanwhile - the tumors are growing and new ones show up with each MRI. As the tumors grow, so does my son's frustrations, fears, pain, and suffering.
They can't operate because the side effects would have terrible consequences; his face would droop, he would lose the use of his arms, he would lose his sense of taste, his hearing would be affected, and here is the kicker: the tumors would grow back. What is the name of this horrid disease? Schwannomatosis, and because it is such a rare disease, expert or no expert, nobody seems to know what to do, or how to effectively treat the pain my son is experiencing. 
Almost two hours have passed since my son went to have his MRI done, and I am starting to feel anxious. Writing this has helped me to stay somewhat calm, but I am finding it harder and harder to keep my little ''grey's'' from hijacking my emotions. 
What will the experts have found this time? What fresh new ''hell'' awaits us this time?
I feel tempted to phone somebody, to tell that somebody of my woes, but experience has taught me that doing so usually proves to be upsetting rather than comforting.
A common sentence that many of us often use when someone tells us of their troubles is: ''I know just how you feel'' and before we know it we are talking about our own woes rather than theirs. 
(Mea culpa= me too)
Mostly I think we use that sentence as a way for us to show support, understanding and camaraderie,
but I am just not so sure how helpful that sentence really is. I mean, can we really ''know'' what someone else may be feeling?
I don't know what my son is feeling as he deals with his illness, I only know what I feel watching him suffering with it. So I resist the urge to want to ''fix'' it, or to tell him that I know what he is feeling, instead I ask: ''Is there something I can do to help, would you like to tell me about how you are feeling right now?''
Three hours.
I put down my pen and walk over to the coffee shop and buy a coffee for me and my son.
Back at the plastic table I sit down then take a careful sip of coffee.
There. There he is. We make eye contact and he comes to my table.
He sits down on one of the plastic chairs, I hand him his coffee and ask: ''How did it go?"
''It was terrible!! The purple dye they injected in me made me feel like I was going to go crazy, it was that uncomfortable. At one stage I felt like I was just going to pull everything out and just walk out of there.''
''How do you feel now?' I ask.
''Oh, I am okay now, so let's just go,'' he says as he starts to walk toward the car park.
I want to ask him if he has been told what the result of the MRI was, or if there are any good news, or if they have found a medication that could ease his pain, but I say nothing.
I say nothing because my son has taught me that when he wants to talk about something, he will do so in his own time, and I respect that.
His own time comes in the car ride home from the hospital, and as he tells me of how he felt going through yet another uncomfortable and painful procedure, I marvel at his courage and bravery.
You see, my son has been prodded, hooked up on machines, had umpteen cannulas and other sharp objects stuck in to him, worn oxygen masks to help him breathe, swallowed handfuls of pills at the time, etc.etc. ever since he was barely a year old. He has dealt with health issues all his life, at times issues serious enough to bring him to the brink of death, but he has always dealt with those issues courageously and bravely.
And that's the thing about the line ''I know just how you feel'',  even if our intent when we use it is to show support, I am not so sure it's always interpreted that way. 
What we actually know and are truly capable of knowing, in my view is limited to our own feelings and emotions, but such being the case, that in no way prevents us from being compassionate and attentive listeners if or when someone shares their feelings with us.
Instead of saying ''I know just how you feel'', perhaps we can use the phrase ''It sounds like you are going through a really difficult time right now, can I help in any way?''
That way we will not assume to know something, rather, we will let others tell us with their own words what they are feeling and or going through.

(The above written in italics comes from a notebook that I write in while I wait for my son having tests done in the hospitals.)

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