Just Being Totally Honest Here…

Mom, Diane (my little sister from Texas) and Me 2021 Thanksgiving Day

One thing I’ve often written about here from the viewpoint of someone living with disabilities, is that one of the hardest things to cope with is simply all the “normal” life experiences EVERYONE deals with, but dealing with it with disabilities.

I have a large network of peers who also write and advocate on behalf of the disability community. You would think God in His infinite grace, would allow people already dealing with a lot to be cut some slack with other kinds of challenges. That isn’t how it works though. “My people” often testify and share how hard life has been for them recently. People with disabilities still face the loss of loved ones, sickness (flu and COVID – aargh), break-ups and relationship implosions, job loss, traffic tickets, power outages, and running out of toilet paper! We don’t get a pass on tension headaches, occasional stomach upset, stubbed toes, or WIFI troubles.

Don’t get me wrong! I’m the first to stand on a soapbox and shout to the world how wonderful and worthwhile LIFE is. That doesn’t mean that life isn’t sometimes very hard, and it doesn’t mean that it doesn’t take work. If people with disabilities have one advantage over those who do not live with challenges, perhaps it comes down to these two things:

  1. Experience has us recognizing our limits much quicker and more reliably than those who do not live with disability.

2. We are more likely to ask for help.

Today, my Mom took a fall (or two) just trying to do some normal daily activities. ALS is an unforgiving disease and it is always progressive. Mom has bulbar onset, which means early on it impacted her speech and fine motor skills. It is now impacting mobility as well, however. Hence, the falls today while doing normal everyday activities. My little brother texted while a little freaked out and I calmed him down. Then I proceeded to freak out myself.

Immediately after finding out about Mom’s fall and trying to get a grip on next steps, I went outside to my back porch. We are having very un-December-like weather and the dogs were romping in the yard. The sky was blue and there was a nice breeze. This place is usually like an oasis to me. Instead of enjoying the moment, however, I marched to the edge of the porch, looked up and stuck my finger at the sky while semi-shouting,

“Stop it! Pay attention! My Mom is getting hurt!”

Had a neighbor been watching they may have thought I’d lost my mind. I didn’t care and HE knew Who I was talking too with a little stomp to my foot, with finger pointing somewhere in the direction of where I imagined His face, and shouting about the injustice of it all. God knew I was fussing at Him.

After my little conniption fit and about five minutes of bawling my eyes out, I realized how silly it was to talk to God about what is “fair”. I mean life just IS NOT. We were never promised a life of FAIR experiences.

We are able to learn from experience, and what I have learned is that reaching out for help makes a difference. So I called my little sister in Texas and I texted my Mom’s sweet Monday-Friday caregiver, Sarah. It helped. We have a plan. It gave me a little hope and encouraged me.

My friend, don’t be afraid to rant to God. He can take it and frankly if anyone knows about Their loves ones suffering and things not panning out in a “fair way”, it’s God.

Don’t avoid reaching out for help. The reality is that we are allowing others to be a blessing to US and to help. I tell myself that by not reaching out, I am robbing someone of that opportunity to make a difference in my life that day.

Just being totally honest here, but I yelled at God today. I survived because He gets it. He really does.

L. Denise Portis, Ph.D.

2021 Personal Hearing Loss Journal

One thought on “Just Being Totally Honest Here…

  1. I love this (the message, not the reality) and you. You know what I did today, as I writhed in pain because of the periodic hip spasms I am prone to (you know, because I don’t have enough physical and mental challenges to thwart my ordinary, daily activities)? I asked G-d if he would stop it already, take me and toss my body in the trash. He didn’t say anything (that I could “hear”)…although I’m still here (and the hip is still a problem but slightly less so with meds and time) so I guess the answer was “no”, or “not right now”. Sometimes He speaks, silently. And yes, I’m here because of it, and grace.

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