I was strong before I had MG – really strong. An athlete since I was a child, I enjoyed sports and being active. I also loved to lift weights. Maybe a little too much, that was debatable, but I liked the appearance of looking strong and loved how it made me feel so capable. I have a friend who’s in a wheelchair and she’d always tell me to wait for someone to help pick her up. I’d smirk and say “G, I got you.” And leaning down, I’d scoop her into my arms with such ease, so high, that she’d say, “I think you can put me over your shoulder and run up a hill!”
I probably could have. I was that strong, but not anymore. That kind of strength had been unknown to me for so long I’ve forgotten how it feels. I don’t remember a time when I could talk as long as I wanted without my jaw getting tired or my tongue feeling like a dead fish in my mouth – completely useless. I was often referred to as “the quiet one” – shy around those I didn’t know well, but now I wished I’d talked more. Not because I had anything all that relevant to say (trust me, my words of wisdom continue to be few and far between), but simply because I COULD!
Like everyone who suffers from something, some days are better than others. Sometimes I find I could talk more, walk more, DO more. But the people who love me know when I need to rest and are very supportive. My twelve year old nephew, whom I share a very deep relationship with, always knows when I’m not good. I play with my nieces and nephews as much as I can, but they know Auntie can only do so much. It’s my little Joey, Jojo, who shows so much concern for me. He’ll say, “Auntie, your talking’s not good today.” Or he’ll notice when one of my eyes start to droop, ever so slightly, a sign that I’m getting weak. He watches me. REALLY watches me. I’ll tell him that Auntie needs to rest and then go lie on the couch. He’ll lean down, give me a kiss and a big hug while telling me to get better.
Whenever we see each other, he always asks how I’ve been feeling and if my breathing’s been okay. It’s very sweet the way he worries so much about me, but I wish he didn’t have to. When he falls asleep on the couch cuddled against me, I wish I could carry him to his bed. But I can’t. I know there was a time I could have, but each day takes me further away from those days that I barely remember them. I now have to wake my sleeping nephew and watch as he groggily makes his way to his bed.
The day it hit me that I’d really lost my strength was when I had to ask my near-seventy year old mother to open a jar for me. That was brutal. It made me sad and she knew it. I used to be the one people asked to open jars, carry the heavy bag, etc. This happened in the first few years of the disease as I was slowly transitioning from my old life into this new one. It was hard for my mom to witness. Often, I’d hear her on the phone, expressing to someone with sadness and maybe a little anger too, “She was used to being so strong.”
Thankfully, I am now able to open jars by myself. It’s a part of the “good days” that the new forms of treatment my doctors have put me on allow me to enjoy. The treatments have increased what I am able to do, and for that I am grateful, but it isn’t anywhere close to the capabilities I once enjoyed.
My nephew was too young to remember how I was before I got this disease. He only knows me as being sick, yet despite this, the song we hold hands to and refer to as “our song” is Bon Jovi’s “Superman Tonight.” It’s one of our “road trip” tunes burned onto a CD designated to accompany us to whatever destination our journey brings us.
The chorus goes like this:
“Who’s gonna save you when the stars fall from your sky? And who’s gonna pull you in when the tide gets too high? Who’s gonna hold you when you turn out the lights? I won’t lie, I wish that I could be your superman tonight.”
The line where Jon Bon Jovi sings, “Who’s gonna hold you when you turn out the lights?” My nephew yells out “Auntie is!” and while I’m driving I reach behind me and we clasp hands every time that verse is sung. Every time. Although I hardly feel capable of being someone’s hero anymore, at least I can still get a glimpse of it during a car ride while I sing out loud with a little boy who really, really loves his Auntie and sees her as his “Superman.”
Maybe I can’t lift my friend from her wheelchair, carry my sleeping nephew to bed, or bench press the ridiculous amount of weight I probably had no business lifting in the first place, but there are days when I feel like I can. I do as much as my body allows. And although it may not come close to what I used to do, I go to bed snuggled underneath the cape that is Superman because there are days where I still feel invincible.
When I was a little girl Superman was my favorite superhero. It really wasn’t a hard decision. As a toddler he was already lifting cars, he could fly, run faster than a speeding bullet AND the guy could change clothes in a hurry. I’m talking in like a millisecond, which would come in handy during a hurried morning-after getaway (not that I would ever do that! I’m the girl who stays and makes you breakfast) Did I mention the guy could frickin’ fly! (I purposely didn’t bring up the whole x-ray vision thing because that ability played NO role in picking him as my favorite. None whatsoever).
But the best part about being Superman is that he gets to save the woman he loves while she’s falling into the pits of the Niagara Falls. Who wouldn’t want to do that? I sure would. I’d always seen myself as being the protector of my family, though sometimes I doubted my ability to do so. I worked out because I wanted to look tough. Hoping that if I appeared that way, no one would mess with me because I didn’t know if I possessed the courage to fight back. I only knew I never wanted to find out and that’s why I needed to look so strong on the outside because it countered how I felt on the inside.
Though this disease has taken away much of that outer strength, it has made me realize the inner strength I never knew existed.
Maybe I’m not Superman anymore, but ego-check, I never was.
Thank you for reading this and if you’ve never heard Bon Jovi’s “Superman Tonight” please check it out! Great song! My nephew and I also love Bon Jovi’s “Love’s the Only Rule” Another road trip song we blast out loud!
aliciajoseph 