The Gift of a Life’s Sentence

Let’s be honest, being a mom is hard. Even with two incredibly smart, competent, empathetic and all around amazing kids, it is still an all out exhausting enterprise. Anyone who has been a mom, acted as a mom, or loved like a mom will tell you this. It leaves you like Flat Stanley most of the days (look it up). But if a train were barreling down on us and the only thing that would save their lives was me becoming an actual Flat Allie, I would gleefully jump onto the tracks and take one for my team. There is nothing I wouldn't do for them and I believe, over the past 18+ years, Mike and I have given them every ounce of our energy, love and attention that will hopefully set them up for the future they deserve. 

For the first10 years of my role as a mom, I was so busy that I never considered what my life would be like after they grew up.It’s just not on your radar when they are babies or toddlers or even in elementary school. The concept of them leaving someday seemed so incredibly far off that I never processed who I’d be after they were gone. For many years, all I could think about was getting to the end of the day so I could crawl back into my bed. But then somewhere around the time when Ava was in middle school, it hit me like a wrecking ball that at some point soon, they wouldn’t need me as much and (gulp) would actually leave. My days of driving to and from school, and soccer, and friends’ houses; making cupcakes for school parties, packing lunches and picking out their clothes, would in fact come to an end. Like so many of my mom friends, I felt lost at the very idea of it. My main purpose in life, which had been my kids for so many years, was about to shift radically and I was frankly, terrified. 

Around this time, I started seeing a therapist. It was something I had always wanted to do and I finally pulled the trigger and found someone great. One of the things we discussed early on in our sessions was how I was going to handle the time after I “launched my kids”. Launched? Like out of a cannon? Like into space? I put on a good show for her and said things like “I cannot WAIT until I have free time to myself! I’m going to sleep and eat when I want, go to the gym everyday, and actually see my friends in places other than on the sideline of a soccer game.” All of that was true, but she encouraged me to look deeper into how it would feel to have given my whole self to two people for 18+ years only to wake up one day with an empty house. As the years crept on and we got closer and closer to that time, I realized I wasn’t actually fine. I wanted them to go live full and amazing lives, but I also didn’t want them to leave. They were fun, and funny and I love being around them. But then Covid came along and forced them to stay in my immediate vicinity for the better part of two years. It was the worst, most difficult time in so many ways but pure bliss in others. Shortly after the world went back to “normal” though, it was time for Ava to apply and go to college. 

As with most things in life, the lead up to a big event was worse than the actual event. For months, I cried just thinking about the day we’d drive away from campus. I struggled to imagine what our house would be like with just the three of us. But after all the worrying, the actual day was not hard at all. She was so happy and we were so happy for her that not a tear was shed. We hugged her goodbye, drove home, settled in the new version of our life, and lived vicariously through her Freshman year with glee. I know that when Bobby leaves in two years, it will be hard because he’s the last but I am certain that we will be just as happy for him as we were for her and we will adjust to our new life all over again. I know that we have set them up for success and the confidence I have in their ability to fly is strong.  

My goofball kid during the exact moment we drove away leaving her at college. She was laughing and so were we.

Having said all of that, I have definitely struggled to understand what my purpose would be after they are both gone. Heck, I can’t even remember what my purpose was before they came along! Like, what did I DO all day? Well, work obviously, and I am very glad I’ve kept my consulting gig going all of these years - as hard as that was to do with young kids - because working, as stressful as it can be, has always been an important part of my life. But as I’ve gotten older, I’ve had a strong urge to find purpose outside of my paycheck. Is it still fulfilling? Yes. Am I invested in the mission of the clients I help? Absolutely. But I no longer want working to be my main focus in life. So the days of little kiddos are over, and I’m working a little less, and there’s only so many times I can go to Target…so what’s next?

Enter Parkinson’s. 

Your first reaction to that is surely something along the lines of “I mean, Allie….could you not, like, travel? Or start painting? Or learn a new language?” And yes, I get it. There are many other ways that I could have found purpose in my life. But whether I like it or not, life had other plans and this is what I got. And now, this life’s sentence I’ve been given, as strange as this will sound, is starting to seem like a gift. I have a new perspective on life and a clear sense of purpose. I feel guilty even saying that because I know the strain that this will eventually bring to my family, but it’s the truth. So how did I get to this grateful place in the last seven months? Good question. I am not entirely sure - but I do know it didn’t start that way.

For about a month, from the time that my neurologist said the word Parkinson’s, to the time that the lovely radiologist patted me on the back to confirm it, I allowed myself to crawl into my bed at any time of day and cry. I was scared, and pissed and heartbroken for Mike and the kids. I would lay there in the dark and stare at the Christmas tree in our bedroom and didn’t even watch Bravo - which if you know me tells you everything. But by the Monday after my official diagnosis, my amazing sister sent me an email with the subject line “Homework” in which she outlined all of the things I needed to do - sign up for support groups, read information on clinical trials, research medications to consider, identify doctors to try to see and more. Without even really thinking about it, something clicked and I moved from self-pity into self preservation. I did everything on my sister’s magic list and the shift from anger to gratitude began.  

My amazing big sis Shannon who helped get me out of the dark early days of Parkinson’s

One of the to dos on her list was signing up for the Michael J. Fox Parkinson’s (MJFF) The Parkinson's Progression Markers Initiative (PPMI) which is the groundbreaking study that resulted in the discovery of the Parkinson’s biomarker. I signed up for the study on December 20th - eleven days after diagnosis. That small step made me feel a tiny bit back in control of my life. By my birthday, December 28th, I decided to tell the world about my diagnosis in a post on social media. I was really worried about doing that and almost chickened out several times, but getting it out there created a wave of support from my family and friends and that too gave me back a piece of myself. A few weeks later, on January 15th I started raising money for a Parkinson’s cycle ride fundraiser and that was the moment that I really started to feel a sense of joy returning. I have spent the last 24 years fundraising and event planning and doing that for myself for the first time felt really, really good.

I wish I could say that these were all conscious choices that prove how awesome I am, but the truth is that  time period is a blur and I don't remember much of it. I was just moving forward, doing what felt right, and what kept me out of my bed. Since then, I started this blog, created a separate social media profile to document my PD journey (be sure to follow @imstillallie if you aren’t already!) and have begun to find a community of people like me who have YOPD or who want to know what they can do to avoid getting it. Last week, I met with two amazing women from MJFF and talked about ways I can get more involved with their organization - possibly joining one of the patient advisory groups, or helping to organize a fundraiser for them here in DC, and maybe even becoming an advocate for them on the Hill. I also signed up to run the Disney ½ marathon in January as a fundraiser for Team Fox (along with a gaggle of crazy family and friends who are joining me!). I told the gals from MJFF that I am all in to help find a cure for this disease so my kids, and my kids’ kids don’t ever have to deal with this. When I mentioned this to my therapist this week (I’m making it sound like she’s my only friend LOL - maybe!) but she told me that people experience true happiness when they help others. I found this in a Time Magazine article entitled The Secret to Happiness is Helping Others: 

“Scientific research provides compelling data to support the anecdotal evidence that giving is a powerful pathway to personal growth and lasting happiness. Through fMRI technology, we now know that giving activates the same parts of the brain that are stimulated by food and sex. Experiments show evidence that altruism is hardwired in the brain—and its pleasurable. Helping others may just be the secret to living a life that is not only happier but also healthier, wealthier, more productive, and meaningful.”

Wow! So helping other people is the same as sex and chocolate cake? Um…alrighty then! Get to it my friends. :) 

In addition to a sense of mission that philanthropy will provide, there is another gift that Parkinson’s has given me and that is an urgent and unrelenting need to focus on my own health. For so many years, I put my own wellbeing on the back burner. Working out, eating well, staying calm - these were all the things that fell off my daily to do list. But in order to stay as healthy as I can for as long as I can so that I don’t become a burden to my family, I have no choice but to put myself first right now. That means working out every single day, eating well, sleeping and meditating when I can. Whatever I can do, for the rest of my life, to help find a cure for this disease, I will do. And while brilliant researchers are working on a solution, I have to do everything I can to stay me for as long as I can. Over the last few months, since I started posting more about the importance of women making their own brain health (and overall health) a priority, several friends have reached out to say that they have been inspired by my story to start working out, to eat better and to reduce their stress levels. This gives me joy and hope. I want my friends to invest in themselves so they don’t have to face the same future that I do and I will beat the drum of brain health until I get through to every single one of you.

Emma Heming Willis, wife of Bruce Willis, turning her pain into purpose by advocating for women’s brain health

(image from @maketimewellness on IG)

Speaking of women and brain health, I am so inspired by Emma Heming Willis, the wife of Bruce Willis. As I am sure you’ve heard, Bruce was diagnosed with frontotemporal dementia (known as FTD) which has no cure and he has a long and difficult road ahead (putting it mildly). His beautiful wife could have spent an unlimited amount of time screaming into the wind about their misfortune and who would blame her? She is married to a mega star and they presumably have a life we’d all envy - one that she, I’m sure, never envisioned including an incurable neurodegenerative disease. And yet, shortly after they announced his diagnosis, Emma started using her platform to shine a light on dementia, on caregivers and most recently on women’s brain health through her company Make Time Wellness. From their website: 

“We focus on our jobs, our families, our fitness, our inbox, but when it comes to our most powerful, precious, kick-ass organ, who’s going to make time for that?” This resonates with me so very much. Dementia and Parkinson’s are not a normal part of aging and in the last two decades, the number of people living with Parkinson’s doubled to more than 6.2 million. By 2040, experts predict that that number will reach 12 million. And while there is no cure for either disease, it’s not hopeless. We know that up to 40% of Alzheimer’s cases can be prevented with a brain healthy lifestyle and I am certain when the data catches up, the same will be said about Parkinson’s. Emma could have crawled into her bed and cried in the dark about her bad luck, but she chose action instead and I am so inspired by her and the other strong women who have turned their pain into purpose.

So now you know what I’ll be doing for the next chapter of my life. While I continue to be the best mom, wife, daughter, sister, friend, etc. I can be, and while I will still take a ton of vacations, and work on great events, I will also be raising money and awareness to save my own brain while advocating for you to save yours. I’ll do this AFTER I ride, run, lift, swim, sleep, meditate and eat boring salads. And even though this is decidedly not the path I would have chosen, I still see this life’s sentence as a gift because purpose + passion = happiness.