A*Side / B**Side
Both sides of the story. “Sorry.. but I can’t come to work today because I…
If you are a full bill of health..If you’re sat on the train, at your desk after the usual commute or you just got back home after the school run and you’re reading this right now, please stick with it and use your imagination.. If, like me and millions of others around the world, you live with Parkinson’s then this will be an all too familiar view of the world at 7.00am.
Read on:
*Scenario A*. Let’s suppose for a moment: you’re a 40 year old parent, your partner has already set off to work and you wake around 7.00am on a cold, dimly lit Monday November morning with the usual ‘things to do’ on your mind: 2 kids (9 and 11 years old) to sort, packed lunches that still need preparing, breakfast to make, the school run and petrol to get all before you get to your place of work for 9:15am — all normal, everyday things- I am sur these are the same commitments most people my age have to do in the morning. So you reach for your mobile phone, swipe the alarm, you check your socials, your appointments for the day and wish an old friend on Facebook a ‘happy birthday’. This morning, like anyday of the week is ‘do-able’ — you can do this! As your 9 year old son walks in your bedroom wearing only a PJ top and Captain America underpants at 7:25am- your adult brain kicks in and up you get.. “Evelyn (11) time to get up..” The day begins. You CAN do this!
**Scenario B:** Let’s suppose for a moment , you’re a 40 year old parent, your partner has already set of to work and you wake around 7:00am.. you struggle to open your eyes because you were awake most of the night just passed taking pill after pill to try and find the comfort to sleep as your body fails. So on a cold, dimly lit Tuesday November morning with the usual ‘things to do’ on your mind: 2 kids (9 and 11 years old) to sort, packed lunches that still need preparing, breakfast to make, the school run and petrol to get all before you get to your place of work for 9:15am — all normal, everyday things- I am certain they are the same commitments most people my age have to do in the morning.
But today isn’t going to be as normal or as mundane as it was yesterday.
So you reach for your mobile phone, your right arm feels strangely weak.. (did I sleep on it funny?) as you swipe the alarm your whole arm begins to shake.. your phone drops to the ground still beeping away.. as you go to make your first move.. to slide out of bed to retrieve your mobile — well.. you can’t. The left side of your body is rigid, cold and disabled like you’ve never experienced before today — from the tips of your fingers to your toes it feels so so weak (like sometimes when you sleep funny and you get that sensation in your arm or leg.. when the pins and needles fade and you get that overwhelming weakness which then passes after a minute or so) but this is not pins and needles.. after lying there for what feels like ages… your 9 year old son walks in your bedroom wearing only a PJ top and Captain America underpants at 7:25am- your adult brain kicks in and you really must get up.. but you can’t move. So you shout for help: “Evelyn (11) time to get up… do you mind getting George some toast or cereal please while I get moving, thanks love — your a star! George, can you get some trousers on and get your breakfast please? George… George! come on lad, dressed please..”
You see, my day, for the past 10 years, has been tough and increasingly just like *Scenario B*.. everyday.. but still I rise after a handful of pills, and the hope and patience that it will come. The day begins. I CAN do this!
But if you woke up feeling like this everyday.. would you nervously call work and take a sick day? Would you?
Having lived with Parkinson’s for 11 years now (diagnosed when I was just 29) it has become a lesson in humility, patience, perseverance and realistic optimism.. but somedays its OK to just leave the curtains closed, get my kids in school and just let it go — the world will be spinning just as fast under my weakening legs tomorrow- it will, regardless of my feelings of guilt, moderate shame or denial that I can keep up with the majority of people my age who don’t feel like this everyday.
If you have Parkinson’s then remember: You are strong. Stronger than most. Remember this tomorrow morning when you do this all again.
Best,
DS
