“you’ve changed!”

That stupid phrase you hear from friends who decide to split up from their life partner!…… of course they have changed. It is LIFE!

in my opinion it would be incredibly sad to have a mental-age of 18 in a middle aged daddy or mammy. We grow up by living. We AGE not by years but by experiencing our own path, or our family’s pathway through what life throws at us…..

I love my husband.  he always treated me so well.  Making me feel spoilt, protected, valued- from we meet in 1983 when i first held his hand, his hand felt like a MAN’s should; covering mine and i felt security i never had with any previous boyfriend. We were an obvious partnership to all our fiends, and we became married as if it had been written as our plot.

I understood love then  ❤️. LOVE in it’s simplest form.

I possibly planned life:

• US years
• FAMILY – children raising
• work
• retirement
• growing old together….in sickness, or in health….

We are now many, many years married so now into the “in sickness” years, long past the “in health”ones…for me the slow zone. YET i am still with the CHILD RAISING years! ….. HOW would i explain that to my husband.

ALL my planning was pointless as LIFE threw a curveball at us, an unfair illness that made me without any options dependent on him, as I became ill, and less able, then disabled.

I SURVIVED BRAIN SURGERIES… MENINGITIS….But i effectively died …..the ME who went in to that ward, never came out again. THAT PERSON is NOT here….. and it was difficult and painful to acknowledge, but this new me went through 5 years of grieving, with supportive counselling. trying to mark:

A what i was, B what i had retained, C any new extras

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A: i WAS:

• a mammy- main parent
• a teacher
• well known for music productions
• independent
• articulate
• determined to get what was needed for each child where and when ever they needed it.
• a general moral code of JUSTICE
• ready to change the world in for my family.

B: i RETAINED:

• my sense of justice – but now knowing what each child needed but knowing also now I was NOT the person to move mountains to get it for them.
• some music – different – initially unclear what it would be. but eventually it became a choir… Caritas.
• my sense of humour- albeit black.
• dependent…more and more and eventually complete dependence is admitted.
• my WISH to be mother… but realistically life was moving around me and i was being replaced by husband, teenaged children…in their natural way of helping me. HOW could they know that inside my eyes were SEEING the erasing of that role, when they were doing good.
• i loved my family…. but in my eyes took so many picture of instant sighs, instant long heavy blinks, “wait a minute!”… and i recoiled inside feeling the weight i figured i was on every one of them!

C: the EXTRA:

• awareness of my weaknesses like fatigue
• paranoia when i read a text, or hear a phrase i often look to him to explain the world’s meaning to me, or to explain my panic to whoever is speaking, confusing me.
• not willing to ask to go somewhere, as it is already a fulltime job of juggling my appointments and bringing me from one doctor to the next.
• I AM COMPLETELY UNABLE TO DO ANYTHING WITHOUT HELP! Dependency 24/7
• inadequacy. I can’t be independent in ANY context.
• the guilt of stopping so much
• the guilt of reducing OUR extended family life
• the guilt of every task i need from morning til night; pills, food, ventilator, driver, ……and again my eyes photograph every tiny clue of tiredness, of carer fatigue, of annoyance.

I need to feel able to separate LOVE from being CARED for more than ever.

my husband is STILL the man i married, there was no option for me:

BUT nobody took him aside and explained and examined my changes…it was just THRUST ON HIM….by LIFE……as he is the one who is always is by my side…..despite this ME, the person i am was A and now the person i am is C… or maybe moving

he must have like most other middle aged dad’s like all others woke up one day, and suddenly faced the illness and conditions that the world threw at us, EXPECTING a time of rehabilitation and then normal life resumed…

No more dancing with me…more walking with me wheeling myself…no day when exhaustion is not an issue….no visitors…… no real socialising.

He has had to adapt to my disability.

As my health slid, he has had to morphe gently and uncomplaining form husband  to carer – or caring husband.

It was NOT automatic for him to realise I was a different Me.

That was VERY DIfFICULT.

It’s difficult to have to be the one in the relationship being on the receiving end of the condition, but i know it must be difficult at either end.

Sometimes I allow myself to cry.

to be pissed off with my OLD life. For a small person there are so many tears, so OFTEN. But that’s because i ALLOW myself to be vulnerable, as i want to be OPEN, and feel….but he is there to talk me through..tears of grief…for people…for my ability as it was… for my real legs… for loneliness… for pain…for guilt in the extra pressure i cause on our family due to my disability. He is tolerant…mainly… but consistently there. And still making me smile.

Sometimes i look over at him – during the BOX SET hour, and these eyes pretend we are unchanged, just companionably watching “OUR” programs, and i wonder, HOW would i EVER have managed if it wasn’t him here? But i realise life sorted that out for us.

i amn’t even going to TRY to itemise the ways in which as a partner/Carer he HELPs …in ways and areas i would NEVER have wanted to be aware of, but my EYES see it. I am like a silent POLAROID camera. And only I KEEP the ALBUM.

I really couldn’t , as it’s so much entwined in ALL i manage to actually manage to do that i know many people wouldn’t realise, understand, or survive our reality at all.

cos “I HAVE CHANGED” – but i have had no choice. Thankfully I had a husband who was willing to grow up….even if life shat on hum, on US…all of US!

LOVE is so so much and so different than being CARED for. It is being willing and determined to do that CARING, and maybe even to fight that system to make life a bit better…..

Don’t change……

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hx