In Defense of Being Soft
Tiny AJ, as my family calls me.
When I was little, my mom would tell me the best way to accept a compliment was just to say thanks. I’m sure she felt compelled to share this because whenever someone would say anything nice about me within earshot, I would immediately reply to that person with the world’s most bizarre sounding “thankkkk yeewwwwwwww” or silently do a dance move, like the robot. I was an odd little kid. Cute, but weird.
To this day, I am supremely uncomfortable with positive attention and totally averse to being vulnerable (says the girl who just started a blog). This makes it a little bit hard for me to accept the onslaught of “you look great” and “you’re’ so strong” compliments I’ve received since sharing my diagnosis in December. At a recent party, a poor unsuspecting older gentleman I hadn’t seen in a few years said “You look fantastic! What’s your secret?” to which I responded, out loud, “Oh, actually it’s the stress of having a progressive neurodegenerative disease! SOOO good for the scale!!” Ugh. His pained expression, not the first one like this I’ve caused, should have been my clue to stop doing this, but I am who I am. Working on that though. In an effort to embrace things that make me uncomfortable, let’s dig into the feedback I’ve been getting.
It’s true that stress has been a driving force in some weight loss recently. I am also working out every day, eating healthy (limited sugar, no caffeine, less processed foods), drinking a ton of water, trying to reduce stress, and doing my best to sleep more despite being anxious most of the time. Blah, blah, blah, you get the point. I don’t succeed at all of it all of the time, but I have become religious about working out because research shows that exercise may be linked to slower disease progression and is helpful in managing symptoms. I even found a Parkinson’s dance class at the Kennedy Center that I might try if I can convince someone to come with me and meet what is sure to be an incredible group of older, superfly dancing friends.
See? I did the sports!
Several people (you know who you are) will laugh when they read this, but I’ve always considered myself to be an athlete. I mean, I’m no Michael Phelps, but ever since I was little, I have been involved in sports or working out in some fashion. Here’s a pic of me as a wanna be Dorothy Hamill (look her up young ones) and I even ran the Marine Corps Marathon once - incredibly slowly, but I did it. There hasn’t been a time in my life that I haven’t been active, with the very notable exception of the last five years or so when I prioritized everything else in my life, except my own health. So now that I am back on the wellness wagon, I feel pretty good and I’ll accept, I look “better” especially to people who haven’t seen me in a while. As we all know, looks can be deceiving but I appreciate the encouragement.
Now let’s talk about the “you are so strong” bit.
The concept of being strong is one that has always fascinated me. As a kid, I prided myself on being the “good kid”. I was an Olympic level people pleaser (still am to some degree). Even during some of the more challenging times in my childhood, I went out of my way to get the gold star comments like “you are so good, and so tough, AJ” (my family nickname). I’d beam at the proverbial pat on the head, and revel in the knowledge that no one had to worry about me. I’ve worked hard to release myself of the toxic trait of seeking approval and being a martyr and so I’m especially aware of the comments made to me or on my posts that refer to how strong I currently seem - emphasis on seem.
Am I trying to tackle this challenge with transparency, humor and action? Yes. Do I appreciate each and every loving and supportive comment I get? Yes ma’am! But am I emotionally strong right now? No. I am definitely not. I’m actually borderline fragile at the moment, and probably the most vulnerable that I’ve been in my life. I feel lonely and scared and I cry a lot…about Parkinson’s, during difficult work situations, at particularly moving dog food commercials. There’s really no rhyme or reason at this point but no matter what triggers it, I do my best to hide my tears because I don’t want people to see that version of me or to worry about me. With the exception of unloading regularly on Mike, my mom and sis, and sometimes my therapist, I pretty much maintain my outward facade of staying strong and carrying on. But, it is a big old lie that makes the “you are so strong” comments even harder to accept.
Me and Laura intensely watching a U9 completely meaningless game. And our four crazy kids - when they first became buddies and a recent pic when those little jerks all grew up.
A little more than five years ago, one of my besties died of breast cancer at 38 years old. Despite becoming fast friends, we had very little in common. She was a tall, skinny, health nut who fed my kids homemade kale chips when she had them over for dinner and rarely watched tv. Like, how were we even friends? But our soccer mom souls connected over swim practices and school activities and I forgave her for always being dressed up when I saw her. When her cancer came back, we had a heartbreaking conversation about what it would be like for her girls to grow up without her while we were waiting for one of her chemo sessions to start. I told her that they were strong, because of how she raised them, and that they would be ok. We would all make sure of it. Through tears, she said something to me that day that has stuck with me all these years later: “Right, but I don’t want them to have to be strong, Allie.”
She was right. Strong is overrated and we all know that social media is not real. For every smiley picture I post of myself during this time, there could be about ten of my snotty, sobbing, scared self that will never see the light of day. I started writing about this part of my life with the intention of being real and raw but being vulnerable feels terrifying. Will I scar my kids when they read what I write? Will the trolls come for me when I mess up (trust that I will)? Will people get sick and tired of hearing about how hard it is to find out you have an incurable brain disease that you may, or may not have brought on yourself? Maybe but I think what I’m realizing is that the real test of strength is showing your weaknesses. BOOM! That’s like an Oprah level nugget, am I right?
Anyway, let’s do something together: let’s work on embracing being soft instead of being strong. Let’s show each other the messy and the filter free. Maybe instead of telling someone how strong they are, just tell them how you wish they didn’t have to be. Or that you see them and hear them. Most importantly, reach out and tell them haven’t forgotten what they are going through even if your life is super, crazy, busy and generally amazing. And one other thing while we’re at it, can I suggest we ditch the war terminology often used with illnesses, i.e.. “he lost his battle to Cancer” or I’m a “PD Warrior”. The very last thing someone who feels like crap wants to do is suit up and have their very own Braveheart moment. My biggest battle these days is climbing out of my cozy bed in the morning - so let’s just shelve the combat talk, ok?
My goal for the next few months is to keep getting physically stronger while my heart catches up. I have no doubt that in a year from now, I will have my shit back together and living as close to a normal life as possible outside of the protective bubble I am currently implanted in. I know I will get to that place because in my soul I am grateful for the life that I have and will stay in a grateful posture no matter what progression brings. I’ve said this before, and I’ll keep saying it, I am a lucky girl.
PS: Laura’s daughters are in fact, incredibly strong, loving, amazing girls and their mama is beaming down on them while spending her days in what I like to imagine is the spa to end all spas.