My husband was diagnosed with ALS in July of 2013.
I remember Charlie telling me that he had a numb patch on his tongue and that his mom (a nurse), said he needed to look into that. I can remember feeling absolutely unconcerned. Because in the modern world – one has only to go to the doctor, get a treatment, and be right as rain in a short amount of time.
Not so in our case.
As his inconclusive testing commenced, he became more and more worried. He showed me a video about this disease called ALS, convinced this was what he had. After watching it, I refused to acknowledge it was a possibility, determined NOT to preemptively panic before we absolutely had no other choice.
Until there it was – ALS. Amyotrophic Lateral Sclerosis. Lou Gehrig’s Disease.
I didn’t know what it was, what it meant, or how on earth it would affect our lives…until it did.
I often wish I could go back to the time before his diagnosis.
I can still remember that state of being. The calm existence that stems from blissful ignorance regarding the brevity of life. The naïve belief that everything will be fine, that nothing is “un” fixable. The devastating reality of what it means to live with a disease like ALS had never even crossed my mind.
But once that realization hit, there was no going back. ALS is a train on a one-way track, and we lost Charlie in October of 2016.
No amount of time or positivity can ever erase the scars that loss leaves upon a person’s heart. ALS is particularly painful because it isn’t just one, sudden and final loss. It’s a series of losses.
Fear and experiencing those losses changed me. I will never be the person I was before ALS touched my life.
For the most part, I started writing after Charlie died as a way of siphoning the grief from deep inside my soul. But there’s more to it than that.
I HAD to write. I had to write because to keep the awfulness of those feelings in…trapped the poison of grief. It can rot your insides, warp your brain, cause your heart to die a slow and painful death.
I write because that means it was real. That it really happened. It wasn’t just some imagined nightmare I can’t get out of my head.
I write because putting it out there, allows for introspection…allows for positive truths to sprout. And one day, when enough positive truths have taken root, the poison will have been eradicated, or there will be so little of it left, that its diluted strength will have no power over me.
But ultimately, I write as a form of public confession. Because NOT giving voice to my truth, to my honest feelings and experiences, feels like I’m keeping a shameful secret to myself. And shame makes me want to hide away. And for me, hiding away means ALS wins. And I refuse to live in world where ALS wins.
So I wrote. And I write. And somewhere along the way, I realized I was writing about more than just losing my husband. I was writing about losing myself.
This blog is my way of “starting over,” as I search for my new normal after ALS, and all the lessons I’m learning along the way.
#HopeRunsDeep #NewNormALS/z #grief #newbeginning #zerotohero
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