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My Last Blog?

Posted 5/10/2022

I remember sitting on my bed, with my sister, it was hot summers morning on one of generously routine visits to help me move. For good. 

 

I remember crying so hard, it was hard to catch my breath imagining, instead realizing in that moment, I wasn’t coming back home. I was leaving every thing I loved, earned, my city Toronto. It was surreal, didn’t feel real. I didn’t want it to feel real.

 

As we sift and weeded through everything I opened and collected for years, I notice myself, as if I was watching us above,  how desperate and painful I wanted it all to stop. I didn’t want to detach from every little significant thing I clung onto, I kept everything for a personal reason.  From kids Tupperware filled with school drawings, awards they won, to my roller blades and house hold items that made my home cozy to come home too everyday from a job I also loved. 

 

Everything how I knew it, was literally and physically being torn away from me.

 

I never prepared to leave my whole life behind, quit my work, not be able to see my kids and friends as often I did, all now gone… it was like a scene cut out of the saddest movie where the woman is looking out the back window of an old fashion car, and in extra slow motion, everything she’d known was fading right before her eyes. All gone. 

 

It’s hard to find any good in any of this, and yet I’m forced, innately to look for what I am grateful for… 

 

All of that described, leads me to best explain exactly now how my body is being physically taken away from me. 

 

I title this Blog as my last one, because frankly I have no clue if I will be able to move my fingers as I watch, and physically feel my hands month to month lose muscle that makes hands and fingers do what they best do… EVERYTHING!

 

Let’s be honest, imagine you experience your voice disappear, then the very “assist” that needs your hands to speak starts to disappear, how will I communicate? 

 

It’s a terrifying thought being in need, sick, crying for help and not being able to communicate at all?! No voice! No hands to help text!!?  It’s absolutely terrifying! 

 

How will anyone know what I need to say, or what is happening to me? THIS is my biggest fear and what keeps me up at night.

 

My Dr’s team has offered “the next assist” that helps vocals when hands don’t work, it’s called the “The Eye Gazer.” It takes within four to six months for assessment, another month for assessment results, then a couple weeks training how to use the machine, and another month to mount on wheelchair chair. 

 

I’m grateful I’m here, now, all is well. And, I’m crystal clear I do not want to live any more days in this current physical body. 

 

Too watch me, only my loved ones would be brutally honest with me because they know me best. I VALUE not pretending, to be nice having to withhold, transparency and truth is gold ! My siblings and kids honour this with me and with that said, I AM now suffering in this physical form. Collectively, lovingly and graciously we are all ready to live out our best days together without this disease taking more of me then where it’s gotten this far. I’m so grateful to keep dignity in tact and DEEPLY grateful for MAiD being legal in our province!

 

What you (my loving readers) don’t know, or see is I’m now 90 lbs, barely able to stand, needing help with every vulnerable thing. I feel like a baby with no muscles or no voice. My kids and I mutually have talked and this is as far as we can go. It’s sad and scary to not know and know what’s next coming with ALS, and it can be devastatingly bad real quick. 

 

Instead of counting down to my death I’m counting into happiness, that simply means closing the doors on my projects and staying close to my kids and siblings for my last summer together. I move to Hospice August 1st to prepare with serenity to transcend.

 

Will this be my last blog? I believe not!

 

I’d LOVE ideas again for my next Blog?! Leave your ideas in my contact page here on my website. Would love to hear from you! 

 

Leave your feedback on this Blog too I love to hear from you

 

I love you, 

Charmaine

 

Yours truly, 

Charmaine Loverin