Terminal Illness –The Paradoxical Motivator
There is a bikini bottom on my kitchen table!
As ridiculous as this may sound, the memento from my daughters’ summer laundry is symbolically larger than life and I’m sure the visual is pretty amusing too. Amid the other remnants of our newly unkempt existence, I try with all of my might to walk past it without picking it up. This is all a part of the “new and improved” Megean..the delegator..the reminder..the “cleaner” and problem solver..the nagging mom and wife. No I decide it shall stay. Wow, being an UN-abler is way harder than I thought.
On Feb of this year..the 13th to be exact, ALS subtly crept into my life. To quote R.E.M. – I can say without hesitation that YES, “It’s the end of the world as we know it.” Can I get a resounding Hells Yes??? Before you scream for me, know one thing; for us it was quite the opposite. But you can still say Hells Yes! ALS SUCKS!
ALS or Amyotrophic Lateral Sclerosis is a motor neuron disease. It quietly, slowly and insidiously wreaks havoc on the muscles rendering them useless and flaccid. My symptoms began in the left arm and months later, ever so kindly hopped over to the right. (Good disease..it knows how to share) The upside as if there are physically any, are sporting my new way larger boobs due to weight gain. I REALLY was told to gain some weight to sustain the eventual weight loss that accompanies the disease. And you don’t have to tell me twice that I can start eating grilled cheese again after 20 years of “Oh no, I just can’t, too fattening!” abstinence.
My goal is not to dwell on the disease here. I have fervently refused from day one to give it too much air time, you know, akin to a narcissistic serial killer who wants so badly to be noticed by the media. I will be the CNN of my own body and have much preferred to promote my ALS to a more deserving Persona Non Grata status. This sounds like classic denial but don’t worry I know it’s there. Uuugh! It simply has no priority placement in my daily life.
With any disease comes the dreaded family talk. We all have family talks or usually bickering in our case but nonetheless it’s time to sit nicely in our “happily colored” bright yellow kitchen and confer. The lump in my throat and frantically beating heart is rendering me somewhat paralyzed. I try not to breath too heavily or the girls will sense bad news (did I really just say that?) Oddly, a calming but assertive presence washed over me, and the words spewed ala motivational speaker style. Either that or my anxiety meds kicked in. I became a keynote speaker of the positivity and this is what life gives us and we deal with it variety; not generally effective for me because I am and always will be a cynical pushover. They weren’t buying it either. As I looked into my husbands and daughters deer in headlight eyes, I knew I had to add my odd sense of humor to the mix. I ran the table like a presidential candidate asking for their support. That’s when they knew it was really me; the silly mom who laughs at her own jokes and cracks herself up and more importantly, the mom who is still and always will be, concerned with others’ welfare. As I sold them my wares of strength, they listened intently. I am certain they were confused as to why I didn’t appear afraid. Their eyes started to soften and the pursed lips separated slightly. I wanted to hear them speak, ask a million questions, cry, scream or even run upstairs and slam a door (because that IS the girl thing to do) but they didn’t. When they are ready, they will do all of the above, and I welcome it.
Here is the paradox, the strange hypocrisy if you will, of any illness. In my case, I have focused on the terminal variety (yup, that’s me) but I will admit right here and right now that chronic anxiety and depression have haunted me since I was a teen! The catharsis seems to be burrowed within the ill person’s drive and determination to keep normalcy “alive and well” in the home. Weakness, be it physical or mental appears to be replaced by a fierce toughness. My feeble muscles have been replaced by a ferocious type of strength, will and matriarchal obligation to keep my family normal through the most abnormal of circumstances. Do I want to curl into a ball and feel sorry for myself? Absolutely! Do I want to scream “I’m the sick one here”? Without a doubt! I am human. But I would rather be a bear right now, a momma bear protecting her brood.
I have encouraged my husband to continue his hobbies, fishing and being outdoors. He works hard and totally deserves it, besides, dear God who wants to deal with a crabby man? Seeing my daughters pursue their life goals at 22 and 17 without reservation is lovely. I remind them, perhaps a little too much, to be determined and set goals. Complacency is my worst fear for them. I’ll be damned if I would let the disease do that to them. Besides grown up life is right around the corner for them, and let’s be honest, it can really suck sometimes!
So amid my sanctuary of a home, albeit with sticky spots on the floor and laundry askew, I’ve learned that delegating the work has been fun and with WAYY less eye rolling too. I will gladly be the glue and mediator of squabbles for as long as I can the tone-setter if you will. Irony at its best.
Oh and the bikini bottoms? They’re still there, right next to my fall centerpiece.
I really hope we don’t have company!
I am a wife and mom diagnosed with ALS (on top of everything else, sheesh!)
Live on the East Coast- Philly born and LBI, New Jersey transplant
I think too much and love putting these thoughts into words..where they actually make sense
Because in my head..most often they don’t
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