This decade is ending quite differently than I ever imagined it would. Its final 365 days marked my first full year back in my home state. And these 365 days have easily kept me busy. I’ve spent them learning how to navigate my professional life as a full-time freelancer, falling in love with the unbelievable man who will soon become my husband, reconnecting with the beauty of space and quiet and calm, and prioritizing ample amounts of quality time with my family.
My father was formally diagnosed with amyotrophic lateral sclerosis (ALS) in June 2018, weeks before I returned to North Carolina to stay. His symptoms began well before this point in time, but his doctors attributed them to other issues, so no one really knows how far along we are now.
His progression hasn’t been rapid, but it certainly hasn’t been slow, either. We have experienced a rollercoaster of ups and downs with his condition this year, and I’ve spent at least one week out of every month at home with him and my mother, trying to make sure I don’t regret how I’ve spent any of the time we have left. It is in these days, especially those in the past month that we shared in multiple hospital rooms, that I’ve been able to see the vulnerable, scared, and sentimental side of my father that is often hidden from the rest of the world. These days are some of my favorites, so as we all prepare to walk into 2020 with open eyes, ears, and hearts, I want to share some of our conversations from them with you.
Focus on what you have — not what you’ve lost.
As my father’s muscles have continued to atrophy, he is no longer the mountain-climbing, tractor-driving, project-obsessed man everyone knows him to be. But instead of ruminating over all that his body can no longer do for him, he constantly works to focus on all the things he can still do. And it’s that frame of mind that keeps him positively pushing through each day, waking up grateful that he gets to see another one. He knows that if he were to live in his past, he would cease to live at all.
The strength of family is unparalleled.
During his latest stint at the hospital, my father has thanked my mother, my brother, and me for coming together as the team that we are to care for him daily. Every time he says the words, tears pool in his eyes. For a man who no longer has control over his life, knowing that he can trust his wife and children to be by his bedside and hold his hand no matter what is happening is one of the few comforts he has left. We get to give that to him, and that privilege makes our hearts swell with gratitude, too.
Don’t wait to do the things you dream of doing.
Sitting with my father last week, he told me how peaceful he feels about the way he has lived his (almost) 64 years of life. Rather than building a bucket list, he went for what he wanted every time he had the chance. He built a successful business, traveled extensively, created a happy family, read hundreds of books, and gave back to those around him in countless forms. So now, he’s walking down this painful road with no regrets or remorse. And he only hopes that we all can do the same for ourselves before the opportunities in front of us slip away.
Experience what it means to feel pure joy in another person’s happiness.
I’ve never been more nervous to tell my parents anything than the fact that I got engaged last week. Walking into the hospital, bracing myself for the intensity of sharing this huge moment with them, I was visibly shaking. As soon as the words came out of my mouth, I started to sob with both joy and relief. Looking up from my mother’s embrace and over to my father in his bed, all I could see were the tears in his eyes and the biggest smile on his face. He held my hands as he told me he could see how happy my now-fiancé made me every day and how that’s all he has ever wanted for me as my father. That happiness is all that mattered.
Learn to let go.
My father is the epitome of a type-A personality with an incessant need for control over every component of his life. And ALS is the epitome of losing every bit of that control, one piece at a time. Unfortunately, that internal programming is far too strong in him — even this disease can’t conquer it. On one hand, it keeps him fighting. On another, it makes him endlessly frustrated and anxious. As he navigates his fourth week in the hospital, antsy to be released in early 2020, he is showing me how important it is to practice letting go when you still have the choice and when the stakes are far less high. Learning how to relinquish control with the smaller things sooner will make it easier to do it with the bigger things later… and we will all certainly face bigger things later.
I hope these lessons give you pause today as you ponder where you want to go in the year ahead. None of them are simple or easy, but they do make for such a rich and full life. This year was impossible and incredible and full of love and intention, and I don’t think I have ever felt so grounded in gratitude before. I believe we are all capable of so much more than we know, and it’s only through these types of experiences and reflections that we can discover our strength, harness it, and share it with those we love most.
Alena, Such a beautiful, heartfelt tribute to your father, your family and life itself. Of all your fathers accomplishments with out a doubt you and Alex are his greatest achievements! Congratulations on your engagement.