“Time is the coin of your life. It is the only coin you have, and only you can determine how it will be spent. Be careful lest you let other people spend it for you,” -- Carl Sandburg
August 22, 2015 was a lazy Saturday at home. My husband hadn’t been feeling well for a few days, so we were taking it easy. From the laundry room, I heard a thud and then his nickname for me in a voice I didn’t recognize.
I moved quickly. That quickness born out of fear. In the kitchen, I found him collapsed on the floor. He was trying to crawl somewhere, but I couldn’t figure out why, because it was away from where I had been. Drool was coming out of the right side of his mouth and pooling on the floor. He was talking, but in a slow, slurred speech I had never heard. In his eyes, the ones I had memorized after 20 years, I saw pain. And fear. A lot of it. I can’t imagine what he saw in mine.
This is the first time I am telling this story outside of a small group of family and friends. To be honest, almost three years later, I still don’t think I am ready to share every detail. It was one of those days that changes things. The kind where nothing will ever be the same as it was before you woke up that morning. It is deeply personal, but if our story can help even one person, I want to tell it. Because it was here, starting on our worst day, and in the days that followed, when we realized that tomorrow is never promised and if you get a second chance in life, you better take it and run with it and right all of the things you were doing wrong before.
I really thought my husband was going to die when I looked at him on that floor. I could see my whole life without him. It was probably two seconds, but just imagine, for two seconds, losing the love of your life. It does something to you.
It took TEN days, in and out of doctors’ offices and hospitals, before an emergency room physician diagnosed my husband with Ramsay Hunt Syndrome. Never heard of it? Yeah, neither had we. And apparently, neither had the many physicians who misdiagnosed him with everything from an ear infection to dehydration.
I describe Ramsay Hunt as shingles on steroids. It is EXTREMELY painful. It attacks a person’s facial nerve near the ear. There may or may not be a shingles rash on the face. In my husband’s case, the rash was inside of his ear canal, making his diagnosis more difficult and delayed. If left untreated, Ramsay Hunt can cause hearing and vision loss and even Bell’s Palsy. And that’s exactly what was happening the day I found him on the floor. He had a thick beard at the time, so I didn’t notice that his eye wouldn’t close and his mouth was drooping.
I will never forget the emergency room doctor instructing my husband to smile. He couldn’t. Literally could not make his mouth in to a smile. The paralysis had set in. And what a metaphor for that day. It hit me hard. I hadn’t done any googling about this condition and I hadn’t even had the chance to ask any questions of the doctor, so in that moment, that smile I had loved and needed-- the one that helped get me through every hard day for almost 20 years, seemed to me like it had disappeared forever. Sounds dramatic, I know. I guess you had to be there. I walked out of the room then. I didn’t want him to see me cry.
We stayed that night in the hospital and the next month was more difficult than I feel like I can adequately describe. Complications from Ramsay Hunt are far less likely if it is treated in the first three days. But his treatment didn’t start until day 10, so we were significantly behind the eight ball. My husband developed postherpetic neuralgia, a very painful condition that happens when shingles damages nerve fibers. He is extremely averse to pain medication, (or any medication) but when he started taking it religiously, as the doctor prescribed, I knew the pain was unbearable. I would often find him on the floor or leaning on a piece of furniture, clutching his ear in pain.
I tried to take care of him. I took off work to take him to many doctors. I stayed home from work many days to be there if he needed me. But I went to work many days I shouldn’t have. I left him in an emergency room because I had committed to emcee a charity luncheon. Once, I just dropped him off at a doctor and told him to take an Uber home (before his official diagnosis) because I “just couldn’t miss any more work.” Ugh.
My managers were supportive, but I put that pressure to “be there” on myself. Never wanting to disappoint. Always wanting to be the good worker bee. I never would have admitted it until recently, but my job came before everything. Everything. My husband. My family. My friends. Everything. It wasn’t just the nature of my work as a journalist. I chose to put it above everything. And it was the wrong choice.
Today, my husband is doing so well. He still suffers from nerve pain caused by Ramsay Hunt, along with some hearing and vision loss. Overall, we got out of that mostly physically unscathed. But the emotional toll is why we’re here today. About a month in, we took a long scheduled trip and I took this photo of him.
And I cried when I saw it. It was like he was free from it. Free from our old life. But it would take me a little more time to catch up. I was still working too much. Not spending enough time with him. But something had changed. It was there under the surface, bubbling. And it would all come up soon.
It started to rumble again that October, when my Dad called me at work to tell me my Granny had a heart attack and they tried, but……
She was 89 years old. She was the strongest, sweetest, funniest, bravest, most optimistic, most loving person in my life. And she was gone. And I was inconsolable. And this part is going to be short because even as I write it, that lump in my throat returns, as it always does when I think of her. Because I desperately miss her overwhelming love in my life. I miss her voice and her laugh and our hilarious phone conversations and our trips to the casino and her telling me I was too skinny and talking politics and her brilliant advice and the smile on her face when we walked in to her house. And that didn’t happen enough.
I tried what I thought was my best, but I didn’t see her enough. She was only three hours away by car. I should have gone to see her more often, but I didn’t. Always too busy with work. And because she was so proud of my job, that just seemed OK.
“Granny, I’m sorry I couldn’t come see you this weekend.”
“Shan, Honey, it’s OK! You’re working so hard. And I’m so PROUD of you.”
I know grandparents leave us. One million people have told me that my Granny lived 89 years and “that was a good, long life.” And I just stare at those people. Because it wasn’t long enough. Not for me. I would have taken 89 more (healthy) years with her.
I should have made the time for her. She deserved it. I wrote her a beautiful eulogy full of all of the things I should have said to her while she was still here. I hope she knew them. I’m not sure I will ever totally forgive myself, but I’m trying.
Unlike my husband's illness, there was no do-over this time. And through her life, she taught us that no matter what happens, you just have to keep going. So we did. But that little thing inside was stirring. I remember telling my husband in the weeks that followed my Granny’s death that I would never again feel guilt when I lost someone I loved. I was going to change. I just didn’t know how.
A few weeks later, around Thanksgiving, we visited my husband’s Grandpa. We spent the day with him looking at his flowers and looking at old photos and playing with his pup, Lilly. He was a sweet, quiet man. 89 years old, just like my Granny. Nothing in life meant more to him than his family. I knew that with my whole heart, so even though it was hard to make the three hour drive there and back in one day, we did it that day. I remember feeling so good about our time together and promising myself on the drive home that we would spend more time with him. I watched a beautiful sunset on that drive and I remember thinking everything was going to be OK.
11 days later, we got another call. He was gone. His death was so tragic and bizarre, I’m not going to share the details here, mostly because, to this day, we’re still not sure exactly what happened. My husband and I eulogized him, too. Two eulogies in six weeks.
I was two years in to a four year contract doing my “dream job.” Anchoring the evening news in my college town, the capital city in my home state. I was 13 years into my TV News career, for which I achieved some measure of success. What a crazy word. What does that even mean? I’m proud of the stories I told and the positive change I hope I made in some lives and I can’t have regret because I really do see every experience as an opportunity to learn. But I look back and see my success in that career came at the detriment of almost everything else. My relationships, my health, sometimes my sanity! I’m proud of my career, but after those four months at the end of 2015, I knew something was going to change.
I probably knew then that I wouldn’t sign another TV News contract, but I didn’t say anything to anyone except my husband. And over those two years, we started planning a new life. A life where our time was our own and it was largely reserved for each other and the people and places we love.
As I have shared before, we sold almost everything we owned and some people just didn’t get how we could leave our “successful” lives for some unknown peace. Funny that word “successful.” It creeps up on you. Allows others to define you.
You have to define your own success. It’s not the same for everyone. For me, it’s spending time with the people I love. It’s helping my parents as they begin to show signs of age. It’s not being worried I’ll feel guilty when I watch my nieces and nephew graduate from high school, wondering where I had been while they were growing up. It’s hoping I will never again feel guilt or shame or regret when I lose someone I love. It’s knowing that no matter what happens, the people I love come first.
And my lesson to myself from all of this, is that out of our worst days can blossom our most beautiful ones. But we have to be willing to listen and change. The clock isn’t slowing down. Maybe we should.