All I Want Is A Damn Piece Of Toast!

dancingwithalsandlife.blogspot.com

I try really hard to remain positive and to focus on all the good things that are in my life. And I try to live day by day and not think too far ahead in this shitty situation called dancing with ALS and life because I have been on this journey with symptoms starting six years ago. I learned early on constantly thinking about what I am losing or what will not be, takes me down a mesmerizing spiraling Alice in Wonderland rabbit hole, and I land in a very strange world that I don't recognize nor know where I fit in. When I do land in the strange world, I am determined to claw my way back up and out of the spiraling bunny hole.  I really hate when I feel like I'm wasting even one of my remaining days of life that God is giving me, because I'm just focusing on the negative shit! I find it is imperative to keep my mind busy to avoid further rabbit holes or strange lands.  

However, I'm not always successful, and every once in a while, when I feel I shouldn't be so upset about something that seems so stupid but actually is a huge deal, it literally drives me crazy. When I do this, and I start to cry, my spouse reminds me there is nothing easy about this ALS journey, and it is shitty. The little things that I get upset over he says aren’t so little because there is nothing normal about needing to rely on someone for help for even the simplest things. Also, he reminds me I need to allow myself the opportunity to feel this way because I am human for goodness sake! 

Meandering through life, months may go by that I don't focus my time or energy on the simple things I am no longer able to do because I just say, “it is what it is.” And I move on. Probably it is just my personal coping mechanism to deal with the loss of my independence. Although I must say, the struggle definitely is real! I could be having a good day and then all of a sudden, out of nowhere, wham! I start to cry about something. Such as, the other day, all I wanted to do was get myself a damn piece of bread and toast it or have the ability to reach into the fridge to get a drink or snack of my choice when I wanted to have it. Not needing to rely on someone to get it for me would be glorious event and looking back is something I definitely took for granted. 

Sometimes, it feels as if the fridge, stove/microwave and toaster are mocking me, almost like living with sinister evil creatures glaring at me in my own home. I can almost hear the appliance’s menacing laugh in my ears. The funny thing is I waited for years for new appliances/creatures to arrive to my home because I always enjoyed baking and putzing around in the kitchen. Only two months after their arrival, they grew fans, and I started to lose range of motion in my arms. Then it became unsafe for me to use any appliance in the kitchen. I am living in my environment where I am able to see things around me that are so readily accessible, but I am unable to access them due to my disabilities. It is a really unsettling feeling. I'm sure others who have a ALS or have had an illness or even surgery that required rehabilitation afterwards, and needed help from others, have felt the same way. Life was never guaranteed to be easy. But sometimes it feels like my life scale definitely isn't balanced and has a hard tip in the difficult direction. I'm really not asking for a million bucks or something extravagant, all I want is to make myself a damn piece of toast!  

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