Why is it so hard to reach acceptance with a long-term illness such as Parkinson’s disease?

Parkinality columnist Julie Walker, of Bishop’s Stortford, writes not about parking, but about living with Parkinson’s disease at the age of 54...

I feel I have a certain amount of responsibility when writing this column. A responsibility to raise awareness. A responsibility to inform. A responsibility to be honest.

There are three words I don’t think I have used in the same sentence: I. Am. Struggling. There, I said it.

I don’t often write about it because I don’t want to worry friends and family. Or, come to think of it, myself. Somehow, writing it down makes it real.

The Wise(ish) Man, in one of his wise moments, mentioned the five stages of grief and related them to long-term illnesses such as Parkinson’s disease (PD). The five are denial, anger, bargaining, depression and acceptance.

In my 12 years of living with PD, I have experienced all of them to varying degrees and at varying times. I liken them to the Hokey Cokey of disease, without the party hats. I will swerve in and out of them all and experience some simultaneously.

For example, I might be going through bargaining and anger at the same time, angrily shoving money in the collection box in the hope that I will be cured in exchange for a charity donation.

Despite having experienced all of the stages at various points since diagnosis, I have only dipped my toe in the ‘A’ word.

I don’t mean ‘award’, which I was presented with as the Person of Courage winner at this year’s Indies Community Awards (did I mention that?). Or ‘awareness’, which I’ve been wittering on about for years (if a cure for PD is found, I promise I will shut up).

I am talking about acceptance. Why is acceptance so difficult to crack?

With many ailments and injuries, although initially distressing, once diagnosed and treated you are on the road to recovery.

If the Wise(ish) Man had man flu, he might feel rough for a few days, but, after several glasses of fizzy orange liquid and a Countdown marathon, he would be better in a week or so.

Broken leg? After some hospital procedures, including X-rays, plaster and pain relief, followed by a brief but enjoyable stint as Long John Silver in the local panto, you would soon be back to auditioning for non-pirate roles.

Some of the (many) difficulties of living with PD and reaching acceptance are that it is (currently) incurable and degenerative. Also, the medication side-effects and PD symptoms, both visible and invisible, are constantly changing and evolving.

For example, once you get used to the shaking, PD could throw shuffling into the mix.

Recently I have been what I can describe only as hyper-staging – an awful combination of denial and bargaining with a sprinkling of angry depression. I must apologise to everyone and anyone I have grimaced at or ignored. I must also apologise to the Wise(ish) Man for my recent impatience and unreasonable irritability.

I would also like to thank everyone who has stopped and helped the Wise(ish) Man and me over the past few weeks, including the couple who helped us get to the Acoustic Bish Bash event in Sworder’s Field as well as the people who have stopped to help us when we have had problems moving, slowly, around town.

Writing about how I feel does help. Now it’s time to stop wallowing, look upwards and outwards and make the best of what I have.

In the words of Mark Ronson in Uptown Funk, I need to: “Stop, wait a minute, fill my cup, put some liquor in it, take a sip, sign the check, Julio get the stretch, ride to Harlem, Hollywood, Jackson, Mississippi.”

Wait, maybe that should be: “Stop, wait a minute, fill my tumbler, put some Sauvignon in it, take a slurp, pay the bill, Jo get the hatchback, drive to Harlow, London, Blackpool, Southend.”

Not There Yet by The Parkinality Poet (aka Julie Walker)

I know the drill, it happens time after time,

Stopping me, hurting me, it will never be ‘fine’.

Really? Are you having a laugh?

I make plans to take an alternate path.

I try my best, I really do,

To accept what you are going to do.

‘They’ say when I accept, I will feel at peace,

I will be content, my anxiety will cease.

But how can that be? How can I accept?

When I have so much to do, I’m not done yet.