Life Lately
Hi friends! It’s been a minute. Blame life, and back to school and a big work event coming up and a brand new puppy that is the cutest little terrorist you ever did see. This is Bean for whoever hasn’t seen her on the Instagram feed yet and she is amazing in 99% of the ways and 1% terrifying and bitey in the others. We love her so much and know she’ll grow out of the phase where she quietly sneaks up behind us and clamps her tiny teeth of death on our achilles. Anyway, for whatever the reason, writing has been on the back burner for a few weeks but I’m happy to be back at it.
Beanie at an impromptu rose garden photo shoot
I know I promised in my last post that we were at the end of my selfie era and I have every intention of following through on my promise to introduce you to other amazing people I have met but it’s just taking a wee bit longer than I planned to get some of that content completed. Stay tuned for that and while you are all patiently waiting, I thought I’d go back to my favorite topic…me! Ha ha ha..oh boy.
Despite feeling really good for the past few months - emotionally and physically - I had a few days last week when I just completely lost my shit. I guess that is normal, but the weight of having Parkinson’s just hit me like a ton of bricks. I haven’t been sleeping well for about a month and the culmination of that and a lot of stress had me in tears. And not cute tears. Like the big ugly kind that I could not stop from rolling. No matter how positive I try to be, there are times when I am just so freaking pissed at this whole thing and I want to run away from being this person. In addition to the sleep deprivation, I have had pretty consistent pain in my right shoulder and hip and all the way down my right leg and into my foot. The leg pain It is especially bad when I’m driving - randomly. When we were on our way back from dropping Ava off in South Bend, I couldn’t drive for more than an hour without stabbing, shooting pain up the back of my right leg which just flat out enraged me. I am super independent and whenever we do long road trips, I try hard to split it with Mike. The real life manifestation of being dependent on someone else was really, really upsetting and felt like a window into my future. It scared the crap out of me. Add to it the adjustment of having Ava gone again and a sweet, but stress inducing puppy, and I just was DONE. I posted about it on my Instagram and crowdsourced a lot of love and support and eventually got out of my sadness and re-focused myself on doing all the things that make me feel better.
The next day, I was online and saw an older interview between Stephen Colbert and Anderson Cooper where they are talking about the gift of perspective that comes along with trauma and grief. If you haven’t seen it, you can watch it below. I find it so incredibly moving. Both of them have had significant trauma in their lives and their conversation was real and raw and honest and heartbreaking. Stephen talks about being grateful for all of the things in his life despite having endured the loss of his father and brothers in a plane crash. And Anderson gets choked up as he is clearly reflecting on having witnessed his brother’s horrific suicide. Life, as they discuss, is full of overwhelming heartbreak and you can either choose to be bitter about it or to accept the hardships, along with the happiness, and live a life of gratitude. This is something Michael J. Fox talks about also, and it has been my mantra since last December. Despite the path that I’m on, one that most people wouldn’t willingly choose, I am really grateful for my entire life, even though I know what lies ahead.
I shared a short clip of their longer conversation and my post has gone viral with almost 1M views, which has in turn increased my followers by a lot. I’m happy to have so many people joining me in this journey because the more people that see me as a representation of what Parkinson’s is, rather than only thinking of it as a disease of old age, the better. I could do without some of the hateful comments that keep popping up on that post, but that just comes with the internet I supposed. Thank goodness for the block button.
As I inch closer to 10,000 followers (I know…I know…not that big a deal Allie. No need to get yourself an agent) it has made me think about what I want this community to be in the future and what it has already become. I am absolutely amazed to have been getting incredible messages from people I know and from complete strangers - some from halfway around the world about how they respect my openness and transparency about having Parkinson’s and I appreciate every message so much. It is truly one of the most unexpected joyful parts of this past year. People who hadn't shared their own Parkinson’s diagnosis yet who were inspired to do so because they found my page. Ladies at a Southern Living lunch club who independently heard about my page and talked about it. Sisters in Wisconsin who texted each other about it. And a woman in Estonia - the place of some of my ancestors - who reached out. Friends from high school and college and former colleagues. Dozens and dozens of notes that have lifted me up and encouraged me to keep going with this little project of mine. And it’s not just about Parkinson’s obviously. So many of us are dealing with health struggles, or family issues, or loss. As Stephen says in the interview, it is a gift to exist. But with existence comes suffering and none of us are immune to that.
It’s a week later and I’m starting to feel more settled into the fall routine and very much looking forward to the puppy training classes that start soon. But as the one year anniversary of my diagnosis looms on the horizon, it is definitely triggering a lot of emotions about this time last year. I’m not going to lie, Thanksgiving last year was pretty brutal. Mike and I knew what was coming but it hadn’t been confirmed yet because we were waiting for the DatScan to happen. We also wanted to wait to tell the kids when we knew for sure and that meant waiting until mid-December when Ava was home for break. If you know anything about me, you know keeping a secret is not my strong suit. Clearly I over share or you wouldn’t be reading this. So keeping it quiet on what is our absolute favorite holiday, just plain sucked for both of us. I will never forget lying on the couch early on Thanksgiving morning before anyone else was awake, when Mike came over and quietly laid down next to me and we both just cried. I think up until that exact moment, I was still in denial, or maybe shock. But seeing him cry, someone who is stoic and strong at all times, was like a dam opening. It took every ounce of self control to keep the tears at bay the entire day. Luckily we were surrounded by family, tons of food and lots of cocktails to help. But thinking ahead to this year’s holiday season has me both excited and a little nervous. I know we are both in a much better place in every way, but it’s hard not to have some muscle memory about this time of year. I’m going to focus on replacing those really stressful memories of last year with celebratory ones this year so watch out world….holiday elf Allie has been activated! Here’s a pic of last year’s Thanksgiving table. Clearly I worked through my sadness to be the master table-scaper that I am.
Last year’s Siggy Thanksgiving table
Other than all of that, I am working hard on an event in Austin in a few weeks and then I’m going to turn my focus to doing more of the volunteer work I started a few weeks ago with my post/video for the Michael J. Fox Foundation. I am excited to see what is next with them and with other orgs. It feels so fulfilling to be on the flip side of the advocacy effort - no longer just as a staffer, but as an actual advocate. It’s intimidating and exciting and I’m ready for more. I feel like maybe I was made for this period in my life. I have witnessed so many incredible people speak out for causes that are meaningful to them during the course of my 25 years in the nonprofit world and now it’s my chance to do the same. My only fear is what will actually come out of my incredibly unfiltered mouth. Lord help anyone who puts a microphone in front of me. Don’t say you weren’t warned.
Thank you all for reading and commenting and sending love. I know that I am not alone in having challenges and there are many things in life worse than having Parkinson’s. Sometimes I feel guilty about how much support I get through writing and posting because I know there are so many other issues in the world and that I know many of you are facing too. Just know that I am incredibly grateful for the support you all give me and I will never take it for granted. If there’s ever anything you need in return…don’t hesitate to ask my friends. Except you Beanie…you are in time out until you stop trying to eat us. Thank goodness you are so damn cute.