What does “me before you” mean with respect to ALS?
Me Before you is the first thought a parent has when their child is diagnosed with a terminal condition. It should be me, followed by “no parent should outlive their child”.
When we broke the news about ALS to my mom she didn’t understand immediately, we had to explain. Once the information sunk in so did the realization of what it meant. After we had a good cry and long hug, in true Mexican mom fashion, she said “alguien te iso Ojo!” Someone gave you the evil eye…
Since then she has cried allot, I’m sure, but only a few times in front of me. You see she is being strong for me.
Every time she visits, which is as often as she can, she has news of a new treatment in Mexico or some other foreign country. In addition to doting on me, to a fault. This is her way of showing support and indicating that she is not giving up on her boy.
No parent wants to see their child suffer, but that’s the reality of life. I love you mom! Thank you for spoiling me. I know that if you could trade places with me you would.
Many mothers and fathers are dealing with this very situation at this very moment. Asking the universe, why? Why my child? Anger wells up followed by fear and many questions. None of which have a straight forward answer, if at all.
I don’t speak for all, just myself; this disease is not your fault. You and nothing you did caused my ALS. All you can do, all we can do is be here for each other. Yes you will see me deteriorate and it will rip your heart and soul apart. Know that I love you, simply be at my side during this time. Your love and support are the blanket that wraps and gives me comfort.
So you see, “me before you” is very significant with ALS, every parent of a pALS is living this.
Once again my mind went there, strange thought moment…
ALS is like a Car dealership.
What!? Have you lost your mind TJ&O!
Sima Dawn na! Let me splain.
ALS comes in many “models”, different “years”, many “styles”, many “colors” and “trims”.
Getting a diagnosis is like car shopping. Sometimes you visit several dealerships (Doctors). This of course after scouring the inter-webs researching (WebMD), for the model you want (don’t want). The dealership, after you purchase enrolls you in their service program (ALS Clinic). Just like a new car our bodies require frequent service, it also devalues, and lets be honest you can’t turn back the odometer.
As for models, there are slow, fast, middle of the road, one seater, two seater, family size and even models passed down to children.
So you see, ALS is like car dealership… just sayin.
After the initial mind numbing reaction; you know, where your world closes in and you can’t hear a word. For a moment that is, until you regain your composure. Then the questions begin, emanating from your thoughts like a visible dialogue. Flowing like text messages, swirling through your mind, an indiscernible chorus.
What next? Information overload; what’s pertinent, what’s not? Who to ask, when, what to ask? You just want to scream!
You consume every nugget of information possible, mental indigestion ensues. A bloated mind, full of…questions. How will I progress, fast, slow, in between? What can stop, slow down or cure me? Is the twitching the precursor to losing my, arm, leg, hand or foot. Is the choking an indication I’m about to have my last morsel, lose my voice, or worse need a trache?
How, when, what, where? Questions, questions, questions, what are the answers?
I wish there were answers. answers to help you plan for decisions, to anticipate loss, the constant loss, the eventual final loss. Here’s the only truth of ALS; ALS afflicts anyone, in many ways, varying degrees and on different time tables. Some will say they know what loss is coming next, truly only the disease knows. Treatments, what few there are, work for some but not for all. Until there is a cure, ALS is our companion until we take our last breath, this is true.
There is no way around the above process, we all experience this.
Live your life. Live your way. Live the best you can. Live!
What does this word mean to you? Contact of the physical type? Or a more ethereal meaning, to ”touch” ones life, emotionally or spiritually. What does this mean to someone living with ALS?
It is one more thing we lose and it’s multifaceted. May I share?
With the loss of physical ability comes, eventually, the loss of one’s hands. Pretty obvious, losing the ability to hold anything, to touch anything. I miss holding a book, rustling through a magazine. I miss turning the page of a good book, not to mention the smell of a familiar dog-eared paperback.
Well that’s odd don’t you think?
Ok, this is what I mean… “Close your eyes, now imagine walking into a used book store. What hits your mind first? The smell! Well for an avid reader this biblio- bouquet (sic) reminds us of imaginative adventures. But I digress.”
Now, the following “touch” is one we all miss as persons living with ALS: human touch. The touch of others, the touch of our loved ones.
But your care requires you to be touched every day.
Yes, however that is clinical contact, contact with a purpose, sometimes hurried, always clinical.
No, I’m talking about, hand shakes, hugs, fist-bumps, high-fives, shoulder bumps, etc…
The most personal loss is the intimate touch of our partner, however this is a double edged sword. Both miss it, both desire it and both are fearful of broaching the topic.
Fearful of hurting the other, emotionally, spiritually and physically. cALS fears hurting their pALS, exacerbating the ALS. Of course I’m talking about intimacy, but this goes beyond just that, that’s another conversation.
As pALS we become “untouchable”, perceived as fragile, breakable. This couldn’t be furthest from the truth. I may not be able to actively engage in physical greetings, but you also don’t have to stand six feet away when you do (barring covid). You see, we still crave and need human touch. Even if it’s a one sided exchange, don’t be afraid, we won’t break.
“OW! Just kidding…lol.
Touch, what does it mean to you? It means the world to us living with ALS. In every facet of the word…
It’s not often that one realizes the cosmic convergence of two souls. Until the universe throws a challenge onto your path. ALS is such a challenge.
As my body deteriorates, in essence becoming broken, so does your heart. Yet you remain, through the sleepless nights, through your exhaustion; at my side.
When our hearts collided we didn’t know what our future held, yet we hurled ourselves heart first! Little did we know the mountain that lay before us. As we struggle towards its precipice we are conflicted. Why, because we know the vantage point, when we reach it, will be splendid but also our last.
A match made in heaven… my broken body and your broken heart.
The day we introduced you to these three letters, it altered our lives and relationship irrevocably. Regardless of your age at the time, you grasped the gravity, you understood. Your response broke me, not because you cried, but because you didn’t. You responded with a hug and “it’s ok”.
Your strength astounds me, I am blown away by your resilience. I know you cry when alone or with your siblings, asking, why them, why now, why us? I don’t have those answers. All I will say is, let’s make the most of it and create wonderful memories.
I know I’m supposed to take care of you, not the other way around. It was never supposed to be this way. I try not to cry, but I can’t help it when I look at you. My thoughts go back to my feeding you as a baby, now that you feed me. Now that our lives have forced us to switch roles.
Now instead of talking about your future plans we have conversations about my wishesb; I have to let you know before I lose my voice. Your days now revolve around my needs; instead of spending time with friends, your days with me.
Memories flood your mind while tears flow from your heart. My suffering has ended, yours has just begun. Know this, the pain will never leave, but life will weave into it and soften it’s effect. It wasn’t supposed to be this way.
Once these three letters take hold, they never ever let go…A-L-S.