How are you?…

“How are you?” … is a question I’ve been having heaps of trouble handling.

How does one respond?

For a few weeks I tried replying to this casual question in detail – and wound up getting myself in trouble or misunderstood, which made me rethink my human interactions.

So here’s what I’m staying with for now, and what may work for you – or hopefully, at least it is food for thought. And there is a humorous edge to some of this. Man, do we need it…

First though, let’s set the assumptions here:

  • This is not about “How are you?” from a stranger or nodding-acquaintance. Like a neighbour or shopkeeper.  It is about a greeting from a friend or family member who knows the condition you are in, knows that you are in pain.
  • Sure, it’s only been a month since I learned that I’m on the TN highway.  So yes, I am a relative newbie to Painworld.
    BUT..  here’s a thing:   I believe that the main difficulty with TN (in the context of social interaction) is that you look fine. And with that, I have years of experience: Like… Thirty years of barely controllable hypertension, on enough medication to fell a horse …. Twelve years with the after-effects of a pretty darned severe stroke: Left -side weakness, depression, pins and needles, muscles that need instruction before every move – (but hey! I look great! Must be fine, right?) …. and a  (thankfully mild) heart attack that killed off about 18% of  my heart pump.

You see? For the purposes of this discussion… I am more experienced than anyone should ever be, in looking on the outside like a functional normal human (whatever that is) and inside my body and life, living a struggle – every minute of every day.

So along comes this infernal condition and suddenly it’s not just the pain I have to deal with. It’s socialising as well.

And for those who think that I am overthinking this… For me, there’s two main issues here.

Issue #1: Me. I am still coming to terms with this. I am frustrated and depressed and in pain. And I am not yet in that desirable head-space where people’s reactions to my state of mind and body do not matter. I suddenly have this malevolent Beast riding on my shoulders and I demand…crave?… some acknowledgement and understanding of it. That’s just me, July, 2018. I’ll get better with handling this…. I am getting better (I think)

Issue #2:  In company. Let’s say a social gathering….  If you’ve had an accident and are all bandaged up OR if you are on crutches OR recovering from surgery OR you have any of the diseases that have visible markers, then people actually have something to focus on. They can – and will – socialise around you, they are comfortable with your incapacity because they can see it. You can be the brave sufferer because you look like the brave sufferer. That’s an enormous relief to them.

With TN… its a whole different ball game, right?: The thinking is…“You look normal, so what’s the big deal with this pain thing? It’s like a bad headache? We know what that’s like, we’ve all had headaches right? And you know my back pain? That feels pretty bad too, really.
So why are you being a party-pooper? 
I mean, when people talk to you you can’t even be sociable and reply? And smile? “

And you know that deep down in their minds, there’s that wee little suspicion that you are maybe just hanging onto this thing you’ve found and over-exaggerating the pain.

So, some thoughts and experiential advice….

First, let’s talk about children: And I’m not sure that age makes much of a difference. My daughter Anaeka is 26 later this year, so I guess this point is a little biased towards the teen-up years. My view: Keep them close to your TN, they are your point of stability. Like it or not, they keep your feet not just planted on the ground but positively nailed to the ground (sometimes with a nail gun! ;-).
My daughter still has not read my blog and probably never will. You know when kids say to a parent:  “Send me the link.”, what they are actually saying is “Could you send it directly to my parent-spam folder?  That’s where it’s headed anyway.”
Typical morning exchange, when I wander into the family room, my right eye bright red from the electric flames crackling behind it, Spike, the virtual pit bull, still gnawing at my head, as he has for the last two hours.
Me:  (softly moaning, breathing deep) “F**kf**kf*k”
Daughter: ” Have you fed Smokey yet?”
Me: ..repeat above, a bit louder…..
Daughter: “Dad, do you think you can drop me at work after breakfast?”
… etc
You see? It sounds like she doesn’t care. And it could be that she doesn’t care as I think she should, wallowing in my self-pity. .IT DOES NOT MATTER. She is my anchor, reminding me that while Armageddon is on in my head, the world outside trundles on – and I would be well-advised to keep that in mind.

Back to the question.

My recommended default:

“How are you?”
      “Fine, thanks!”

OK, don’t laugh. I am serious. And consider this: Is there any answer you can give someone that can convey your level of pain? Really convey it to them?
Yes, me too… I do need someone to talk to about this, someone who understands. And they do exist. More on people-types below, but let’s stay with this.
So when you reply that you are fine, the next question will invariably be “How’s the pain?”.   (Which absolutely matches the first question in lack of understanding, right?)
Just grit your teeth (metaphorically, of course, don’t trigger again 😉 and stick with “It’s fine. Under control.”
So you are lying here. But you know what? These people do care about you. It’s just that they cannot understand your pain, they are uncomfortable with it, and you need to give them the answers that they want. They desperately want to hear that you are fine, that your pain is manageable and not that bad, and that you are still the same person you were before the flames of eternal hellfire ignited in your head. They can’t see the flames, you know. You look fine, so just fucking act fine.

Now, let’s end with some people-types that you need to recognise and hold close to you. They will give you some salving of soul.

  • The Professional or Informal Helper: If you have anyone close who is of (or in) the helping professions: Psychologist, nurse, someone who volunteers or works in pain areas, someone who has cared for a person in pain ….. talk to them  – and hold onto them – grimly and tight. They are aware that they cannot feel your pain, but they know it. And they understand that you have got a heap of other stuff happening in your head. Their question will be more along the lines of “How are you holding up?” or “How are you managing?”. You see, they are peering over that wall of pain into the dark space you are in, they understand that space – and it’s nice to have someone see that.
  • The Absorber:  These people are gold in your Painworld. The Absorber lets you talk, cry, rant and unload all that dark stuff in your head. They stay with you, holding out a virtual bucket into which you unload, they empty it and are back to let you go again. They are very special and you have to be pretty lucky to have one in your life. My sister is one, I’m lucky to have a few in my life and (here I am tearing up a bit) last year I lost the dearest absorber I ever had  in my life. He was 92 and I lost him, ironically, to pain. An open leg ulcer he lived with for two years, stoically enduring what was effectively as horrendous as a third-degree burn, which incidentally is one the pains that matches TN. And it was 24/7 for him.
    Incidentally – there’s another class of Absorber I should mention here because they will inevitably go unnoticed and undervalued. They are not human. You may well have one, like mine, curled up at my feet right now sound asleep under my desk.
    Jazzy has been tracking me through the past month, aware that my life has changed, watchful eyes on me when I’m wincing at a pain spike. I’ll talk more about her in another post. I know that ultimately it will be my daighter Anaeka and my doggie Jazz who will get me through this, whereever it gets to.
  • There’s probably more that I should/can/will add here – but for now, Ive waffled on enough.

    Have a pain-free day.


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