I used to read regularly, all of the words, then seldom, sometimes skim parts, these days I try to remember books to order from the library and struggle to return them, without even opening them.
I awoke with the line: Dyskinesia is no disco. I rarely remember dreams but sometimes, lines survive intact. They might lead towards a poem or some other form of unpublished writing, toyed-with-scribbles. I value them more than conscious thought, I feel their mysterious provenance bestows a precedence that is closer to truth. Also if it surprises me, then it might surprise you.
But for the past year, I've allowed this habit to evaporate. They are not always guaranteed gold and often dwindle out past the margins of the page. This is mostly because of the physical and mental side effects of Parkinson's Disease. 10 years and counting. Apathy is directly linked to the production of Dopamine. So when you hear someone say - shake yourself out of it, that reinforces the failure and the effect of that failure without offering any help.
I have not directly addressed my experience with Parkinson's. I admit the reality in previous work but it is always with an attitude of surmounting it with exercise, comedy and a positive outlook. Things could be worse. I could have Parkinsons' and have no family or limbs or I could have Parkinsons and be used as a human shield in the Ukraine. On the Late Late Show there was a guest being praised by Ryan Tubridy for not letting his life be defined by the disease. I feel this perspective suits the non-PD person and they don't have to accommodate the disparity in the interaction. An ableist privilege.
I was excited by the recent launches of the Dublin Fringe and then the Dublin Theatre Festival Programmes. I marked the bright, provocative, interesting shows. But the ordeal of booking tickets brought the brutal reality home. If I couldn't manage that simple task and the prospect of travel and accommodation would prove more dramatic than the actual theatre, then it's clear, I won't be going.
I will miss the 'lovely exclusivity' of the theatre going experience. It doesn't matter if the subject is Sarah Kane or Shakepearean fare, the fundamental thing is that we're all in this safe space together and the world continues oblivious outside. It wasn't until I was doing a Masters in Drama and Theatre Studies that I learnt that the Dublin Theatre Festival existed. It exists in a different dimension and enjoys its secrets. I feel its main purpose is to process middle-class angst.
I'd love to be back in the room. I miss the fun and creativity and employing skills that are wasted on Parkinson's. I miss the community, maybe that is a more optimistic version of 'lovely exclusivity' but then people use that as a cover. It's hard because it felt like I finally arrived at a place where I could be me.
I'll leave it there for now. Didn't plan that but I think I''ll take it up sooner than before.
I awake riddled with pain.
Mainly in my legs, and elbows
I see a part of the Currach races from the window (a scene Synge might have seen and made a song and dance about) the difference? life jackets and the double glazing
Crex Crex // buzz of a phone (25 years Inis Mór Corncrake making a come back)
Now do I qualify to be a critic?
only if I abandon play, couldn't imagine the lack of imagination
endeavoured to mop the floor with...a mop and bucket
must attend to the badly bitten cabbages...
Penelope? Blue Flower?
Dreamt I was corpsing in a performance and being heckled by Margaretta Darcy.
doctors, dogs and donkeys
I finally drag myself out of the house and head to the doctor. There’s a twist in my walk and I can feel the creeping threat of dystonia in my left foot. The foot seizes up and painfully tightens into a claw.
Now and then I walk backwards, to keep this process at bay. The irregular pathway tricks the brain.
I can see the pier, the campsite, the house with its newly painted side and new attic windows I nod at any vehicle coming my way.
It’s a clear, bright cold October day.
Yesterday I went for a walk out to Tobar Éanna and as I passed a field a donkey started braying, excessively.
The donkey reminded me of Jacko, our donkey before they were evicted by the priest, years ago, the samedusty colour.
Grace meditated while I check for wrack, I found a buoy, a branch and two smaller twigs. I photograph them for Instagram.
We return the usual way parallel to the shore and pass the place where I used to collect sea rods. I leave the buoy by the cairn.
When I get home I see that my mother has uploaded a picture of my father with Jacko and a cart, at the spot I just mentioned.
Then I remember it is the anniversary of my father’s death, 28 years ago.
The nurse is on the phone when I enter the waiting room. I stand and wait, there’s a lull in the conversation and she asks how can I help, but before I can answer the conversation resumes I knew that I wouldn’t have enough of a window, I sit down. When the phone is down, I tell her about the Movikot I’ve come to collect. It was ordered by the previous doctor. They rotate doctors.
The previous doctor had questions regarding the prescription I got from the new consultant. The former wanted to check with the pharmacist whether the measurements made sense. I had missed him and a new doctor was in his place This led to a slight confusion with the preparing of the script. First the nurse scanned through my details on a computer screen ‘I don’t see it…oh here it is’ The nurse reads it out and verifies it makes sense by seeking my confirmation. The main treatment is available and this is readily resolved. The other two items seemed more challenging. We agree to start with what I have and next week they will have the second handiest thing on the script.
I have the whole beach to myself. I’m walking back and I’m lost in my thoughts. Replaying the conversation. Looking for any wrack. When a black and white collie arrives from midway from the campsite. And directly approaches me and barks. I muster up a performance to ward it off and it exits directly, along the same path it had entered, as if this was his cue all along.
I’m struck by the lack of philosophy prescribed or even psychological advice when I receive my diagnosis. A student doctor holds an image of my brain and he points out the slight disparity in the substantia nigra between the left side and the right side. This practically confirms that the Parkinsonism in my right index finger was pointing to Parkinson’s all along. It had been written off as a benign tremor, then I got a scan just in case and hence here I am today. The student doctor checks in with the consultant, he confirms the diagnosis and writes a prescription for Amantadine. Then he directs me to get a blood test to rule out some other possibility. This is done in another space. While I’m getting the blood test, I start to think of the consequences or rather I try to. I feel like the blood test was a bait and switch. I have no follow up questions. But it would have been a luxury if someone could hold the space and say - yeah this is shit, you’ve got a terminal disease without any cure. Actually I remember he said thar I’d probably have five years of good living. I get a text from someone about a performance in the Taidhbhearc that night, an invitation to help bulk up a meagre audience. I don’t respond.
When I see my mother and I tell her that I have Parkinson’s, she says ‘ah that explains it’. As if secretly she’s been aware that there has always been something wrong with me and she’s couldn’t figure it out until now. And the relief of finally finding an answer to this puzzle is more satisfying than any appreciation of my perspective.
I ring up Parkinson’s Ireland and they don’t have much to offer either. They can link me up with someone my own age in the same boat. I go along with this and make an appointment to call in in-person. When I find the office, manned by one woman part time. She reiterates the arrangement to meet another lucky candidate who is ‘so young’. She apologises for the lack of anything that might help and compensates by giving me six ergonomic pens, that I’ve still yet to use. The Parkinson’s ‘Buddy’ plays golf and lives in North Dublin, we don’t even pretend to have any interest in each other.
If I could advise on how to break the news:
Access the Davis Phinney Foundation. The best resources I’ve found. (no ergonomic pens though)
Each person's experience of Parkinson's is unique.
Upon waking, drink warm water with lemon. Establish that habit. I only learnt of its pertinent benefits a week ago!!!
Exercise – aerobic and Yoga or Tai-Chi.
Eat more fruit and vegetables. Cut sugar as much as possible.
Be prepared for people being unable to deal with your struggle. If you expect people to suddenly accommodate your inability to continue as you were, you might be surprised. People will help but it will be on their terms. C’mon fair is fair!
I imagined I’d have a greater insight on life with an extra awareness of mortality. But you don’t grow insight from Parkinson’s instead your muscles weaken and eventually you fall or you choke on air. So you have to work extra hard for any inspiration. Apathy…
Write while you can. And maybe store up projects that can be completed in the future. Do the hard work now.
Schedule – another thing I learnt only this week! 10 years in!
Also, a lot of the content online is generated by newbies, the people who can't express their gratitude for the benefits of Parkinson's would probably have a different story. The algorithm ignores the silent majority.
Collect as many ergonomic pens as you can and throw them at people who say - 'have a rest'.