Where’s My Fucking Casserole?

Let me preface this post by saying that there is some brutal honesty ahead and if you see yourself in any of this, I am sorry. I love you and hope you still love me. This is just as much about me being careless and hurtful as it is about you. Also, don’t bring me a casserole after you read this. I hate them. 

In a previous post, I chronicled how I found out that I had Young Onset Parkinson’s. If you read it, you’ll recall that shortly after I first heard the word Parkinson’s come out of a doctor’s mouth but before it was officially diagnosed, I went on a girls trip with two of my college besties. At some point over those few days, we went to the spa and got massages - which is hands down one of my favorite things to do on earth. My thoughts wandered wildly during those 90 minutes about whether what the doc had said was true and what that would mean for me, Mike, the kids, my life, my future, and on and on. As my mind drifted, one of the things I couldn’t help but think about was how people would react if/when we shared the news. 

This will sound slightly insane to most of you, but maybe a few of you can relate, that the idea of an outpouring of support from friends, family - maybe even total strangers or long lost contacts  - gave me the teeny, tiniest bit of joy in that moment. Joy might not be the right word but there was some comfort in knowing that people would care about this and make it into the big deal I thought it was.  I am the third of four kids and generally speaking, I am usually in the background - not the one on the stage, always the one on the side of it pulling strings to make things happen, hopefully without anyone noticing. To quote a friend when I told him my news  “it’s never about you so I just assumed you were calling about someone else.” And while I would have LOVED for the spotlight to shine for anything other than Parkinson’s disease, I won’t lie and say that the idea of having a wave of love wash over me wouldn’t be a welcome affair - especially in that incredibly vulnerable time in my life. I know I’m not totally alone in this because I’ve seen that episode of Friends where Ross hosts his own funeral several  times. We all want to know what we mean to people - even if it takes a bit of misfortune to hear it. 

I have been a part of enough medical crises in my life to know there is a protocol for how people react when they learn someone is sick. It usually includes some kind of public announcement followed by flower deliveries, a meal train or even a Go Fund Me. And you guessed it, there are usually at least a dozen casserole deliveries from anyone and everyone who wants to send their love in the form of a crock pot. When I had surgery to remove the tumor on my thyroid, we got so many pans of mac and cheese that I had to give some away when my freezer was full. 

But here’s the thing I learned pretty quickly - announcing you have an incurable, debilitating neurodegenerative disease at 47 years old is not the same as announcing you are sick with other things, especially at a younger age.  Or at least, the response to those two scenarios is not the same. And before anyone gets offended, there WAS a lot of love that came my way - most especially from the people I love the most. Without question, people showed up and continue to do so today. But the truth is that the wave of support from far and wide that I had imagined while at the spa that day never happened. Not one casserole was delivered to our house and I got more flowers when I had my tonsils out a few years before. And while most of that left me unphased because I had bigger things to worry about, there were several close friends, some colleagues/clients, and a few family members that didn’t reach out, or who did initially but who have since disappeared. I won’t lie and say that doesn’t hurt, but it also made me question why. 

I think there are a couple of reasons. The first and most obvious is that Parkinson’s is seen as a chronic, lifelong, somewhat manageable disease and one that most people equate with old age. When you view it through that lens, it’s not hard to understand why there is a different reaction than to those whose lives are in imminent jeopardy. Mine is not and the reaction was perhaps proportionate. 

Hearing news of someone else's illness also makes us more aware of our own fragility which explains why so many of the reactions I received included questions about their own symptoms. Along those same lines, I saw pure denial from people who, despite having tangible proof otherwise, believed that I didn’t have it or that the doctors were wrong. I know this was either because they loved me so much they didn't want this for me, or because of their own fears and so I try hard to be understanding in those situations. 

There also remains a stigma around neurodegenerative diseases - not just Parkinson’s but Alzheimer’s and even mental illness that results in a more muted response to a diagnosis. We called the first Alzheimer’s gala I ever planned, the “Out of the Shadows” gala because people are afraid to talk about it, same goes for Parkinson’s I’m learning. For reasons I’ll never fully understand we as a society are somehow embarrassed by brain diseases and the response to someone having one correlates. More than the original issue of casseroles (don’t you DARE bring me one) the bigger thing I am struggling with right now are two things 

First: the “you seem fine” comments that I get all the time. ALL. THE. TIME. Not the “you look great” comments which I love since I am working my ass off (literally) and who doesn’t want to be told they look great? But the you seem fine comments make me want to haul off and hit you in the nose. Here’s why - I am not fine. I am doing the very best I can to stay positive and proactive and move on with my life, but I am not fine. I have awful pain up and down my entire right side most days. I can’t move my arm in the morning and at other times during the day. My tremors are so bad at times that the furniture I am sitting on vibrates around me. My blood pressure is regularly so low I can’t stand up without almost passing out, and the anxiety I have about my future with this disease is sometimes so debilitating I lie awake in the middle of the night sobbing. I am not “fine” and the implication that I am is frustrating because instead of feeling supported, it puts me on the defensive. Like I have to justify how I’m doing because you can’t see my symptoms in the five minutes we are interacting. 

But probably even more difficult is dealing with people who I expected to be supportive, being completely silent, or even worse, as I experienced for the first time, using my diagnosis against me: “well she has a lot going on - so maybe that’s why she did x”. Perhaps this occurs because I am strong and don’t want to be pitied, or because I project a happy, full life on social media (which is all true) but both feel like a punch to the gut. Sometimes I really feel like I deserve that proverbial high five just for getting out of bed in the morning with this ticking time bomb living in my brain and instead it feels like we skipped right over what is going on and settled right back into the crazy high expectations of perfection in everything I do. 

Well now Allie, you sound a wee bit ungrateful my dear is probably what a few of you are saying right now while reading this. Focus on the people who ARE there for you and be thankful for the support they do give you! Yes, yes, I know that. I am so incredibly grateful for the people that reach out regularly and who always have my back. Those that would go to war for me or who simply invite me to lunch. They are the ones who call and leave messages even when I don’t call them back and who  actually look me in the eyes and ask me how I am. The simple act of asking me how I’m doing changes my entire day. 

We said goodbye to our sweet Buddy last week. It was awful. Truly…I can’t even type that without getting a giant lump in my throat or go into detail about how his 17 years on this earth ended. And I am not sure what I expected at that moment, but truthfully given the last few months, I didn’t expect anything. So when a beautiful bouquet of flowers arrived from a colleague, I sobbed. Literally, heaves. It meant so much to me that she took the time to go online, find my address, pick the arrangement, pay for them and write the card - it was just so much more than I expected and so deeply meaningful in a time of sadness. 

I was already starting to feel bad about feeling bad when I got a text from one of my best friends and bridesmaids in our wedding. Despite losing her big sister to cancer a few weeks earlier, she was writing to check on me. ME. Because my dog died. And because I had Parkinson’s. She. Was. Writing. To. ME. And that is when a giant house fell on me - like the wicked witch of the west. HOW was my college bestie, who I loved and adored, focused even remotely on me, after she just lost her sister? 

You know where I am going with this. We all have our own shit going on and my life is not more important than yours or your loved ones. I get that. But in the last six months I have seen so clearly the effect of carelessness. Of forgetting to include people in gatherings - virtual or in person. Of not checking in on your close friends or family. We focus so much on ourselves that we forget the people that we love the most need a check in every once in a while. Simple forgetfulness or abject carelessness - either way, it hurts. 

When I was researching how to share the news with people (yes I did that) I found an article on a Parkinson’s website that gave me concrete tips on how to make it easier on the person I was telling. For instance, it says: “Some people may hesitate to ask how you are doing; others may ask but not want to know the details. It may put them at ease if you tell them, briefly, how you are feeling, and then move the conversation to a different subject (for example, asking about the latest movie they've seen or their vacation).” Sigh…ok so I get the concept here. Talking about medical issues isn’t fun or even particularly interesting - especially if it’s not happening to you or someone you love. But the idea that it's on the person who is sick to make the other person more comfortable is amusing and slightly annoying to me. 

The same article goes on to say that “for some people close to you, discussing your Parkinson's disease may seem like one of those ‘nothing I say is going to sound right’ situations that we all have experienced from time to time”.  Ok fair enough…so what do I want you to say when you see me? Good question. Here’s what I want: I want is to be seen. To know that you know this sucks and that you haven’t forgotten that I’m going through this even though I’m working, and working out, and kicking ass and living my best life. Really, all I need you to do is what one of my childhood best friends did this week when he saw me for the first time in months. He simply asked “Al, but for real, how are you?” I almost burst into tears when asked. But I kept it together and gave my canned answer of “I’m ok! Working out, eating right, blah blah blah…bullshit bullshit.” A few more beers at the beach dive bar we were at would have likely brought out more of the truth and so perhaps some of this falls on me to be better about being honest. But what is the best way to convey the severity of the situation without being a constant bummer to be around? I haven’t figured that out yet. I’ll let ya know when I do. 

But while I work on that, here’s what I have learned: we all need to be  better, more supportive friends and family members through life’s difficult experiences and that is why I am posting this today. I look back now at situations that others have gone through and while I am proud of how I reacted to some, I know I could have done more in others. I could have told a colleague I was impressed with their effort despite the personal issues they were having. I could have shown up for a family member’s wedding or funeral even when I wasn’t feeling great. And I am damn sure I could have brought over about a million more casseroles than I have in my lifetime. 

I’ll pledge to do and be better at communicating how I really am instead of trying to keep people from worrying about me and then getting hurt when they don’t. While I work on that, next time you see me, you can just give me a hug. A big fat uncomfortably long hug that lets me know you love me and have my back. 

Or…you can bring us a fucking casserole.Just kidding…don’t do that.