How To Be…. – 


Yesterday I watched a movie. 

I tend to watch quite a few movies these days so it’s not rare to find me trying to distract myself in this manner. Some might say I watch too many movies….They are probably not sick people however. Movies have become part of my ‘routine’ for dealing with my daily challenges so they take on a different meaning to the chronically ill. 

In fact this life has many routines that I try and work with. Ie. Meds, showering, eating (when I can), outside time, doctors visits, etc. I know how much they take from me so I can try to brace myself for each coming thing. 

Anyway, one routine we have is movie watching. It’s a helpful bit of escapism     and that is an important routine in itself. 

I watch movies and documentaries to try and escape for awhile and when I hit a 7 or an 8 on my pain scale. Aliens is a favourite and I have seen it nearly a 100 000 times. I never seem to tire of watching Aliens as my body feels like their is an alien inside me. Everyone has their own favourite though and the chronically ill may even have an impressive collection of movies to rival even MGM. 

Yesterday, because my pain was hovering on at an 8, we watched ‘How to be Single’.

I wasn’t looking for anything but escapism. And it served that 80 minute purpose. At the end of the movie the actress monologues about how we should all enjoy our single life because it can be gone so quickly and when we least expect it. 

She goes on to say that we all finally reach a point, when we have enjoyed our independence enough and we decide we want to share a life with someone and settle down. 

After the movie my pain was worsening and I barely slept at all with the nausea, hot rods being driven through my body and acid in my stomach. 

Another routine is pain killers. When to use them and when to pull out the big guns is an art and a well rehearsed. 

So at 3:00 am after begging for death and fighting the urge to go to hospital, the big guns where taken out and the hope started disappearing. Again…

I started thinking about MY single life, and ALL the life before getting sick and it let the pain creep into further into my soul.

You see I wasn’t ready, and am still not ready to give it all over to this disease monster. I wasn’t ready to give up my former life and dive into this limbo that never ends; until my body ages and dies. 

I loved driving. I loved working. I loved going out. I loved my independence. I loved walking.  I loved that person that was “Me“… 

I woke up crying from what was a nightmare and into arrived into the worse nightmare.  Reality. Mine. 

You see the movie was right in that you must enjoy the time you spend as well person… Because you never know when you won’t be. You will never know if you won’t be. 

I can’t say that I know many that I grew up around, or with, that have also shared a journey like this, and got very sick when they were in their 30s but I have met some chronically ill people since then that I can relate to… and some that I can’t. Some are coping. Some are not. Some are ‘inspirational’ and some are not. Some are high functioning and some are not. 

Me? I keep feeling like the cliched broken- hearted-lover that, no matter how much you wish you could be with that person, no matter how much dream about them, no matter how much you loved them… You know you will never be with them. And you have to live the rest of your life trying not to think about them and remind yourself that it wasn’t meant to be… And that’s how I feel about the old me. 

I will always miss that person and sometimes it will be the smallest things that makes me think of them; like a movie. 

I dont want my own movie to be a horror or a sad ending drama, but I don’t think it will ever be the comedy it once was. 

Gentle hugs, 
Trish 

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