My Father, Myself

My father is in the ICU in critical condition right now.

I had a different post I wanted to write today (to finish another tale I started months ago) but I think my father’s story and how it relates to my own needs to be told. The last time I saw him was over Thanksgiving, and sitting on his couch that evening, I pried: “Why haven’t you written your life story yet? You have the dream of every writer: a fantastic story, and all the time in the world to tell it.”

“Nobody would read it. Why would I write that?” His now-normal gruffness and hostility colored his response.

“You’ve lived a life most people only dream of living. You would inspire people to get out and see the world. Just because you can’t do it anymore doesn’t make the life you have lived any less interesting.”

And right there is the key to why I have any story at all. You see, my father has lived an interesting and inspiring life. I didn’t really start to get to know him until I was in college. My parents divorced when I was a toddler, and my earliest memory is of my father driving away. He spent most of my young childhood working in the states, but around the time I was in middle school, he moved to China for a job – and he continued to live and work around the globe for close to 20 years. But in 2012, a combination of an old back injury and a bone spur in his spinal column paralyzed him from the waist down in the middle of the night while he was on a job in Vegas. He was told he’d never walk again.

Not one to give up nor to give in, he was finally Medevaced to Boston, where surgeons took another look at his body and scans, pinpointed the problem, and put him into surgery to fix the bone spur immediately. In less than a year, he had feeling down to his knees again and was out of his wheelchair, walking with a cane and leg braces.

But he will never return to his former career. He has been struggling with that, and with all the changes that means, since the injury. He’s struggled with severe nerve pain and damage throughout his arms that has gotten progressively worse. He hasn’t worked nor traveled. Despite all he overcame to get where he is today – walking, driving, and living independently – he still battles so much every day. He’s currently battling a blood infection and the hospital still can’t figure out where it’s coming from to fix it. There’s so much more to his story. If he doesn’t pull through this infection, he won’t be able to tell it. Then again, even if he does, I don’t know if he would. His stubbornness has gotten harsher as the pain and reality of his new life go on each day. His story needs to be told, and I don’t have all of it – but I do have some.

I’ve toyed with this topic many times over the last few years, trying to figure out the best way to tell his story. Should I retrace his footsteps around the world? He’s either lived in or traveled to every place I’ve been already. Upon my completion of a tale of a far-flung place, he’d come back with his own story of his experience there, 20 years earlier. Should I tell his story like a biography, even though I really only know the tiniest bit about him?

Or should I connect his story with my own – tell the story about our lives loosely paralleling each other over the span of a couple of years, and the only weekend I spent with him, one on one, in my entire memory? The story of how, regardless of where he was in the world, he tuned into my internet concerts every time his schedule would allow, just to hear me sing, when I’d thought for years he didn’t approve of my music? The story of how, although neither of us knew it until our mid-20s, the same wanderlust runs through both of our veins?

That’s the story I’m going to tell. That’s the story I know. It twists and turns, and it takes a while to come together, but here it is.

**

I once struggled with severe, chronic pain from endometriosis and adenomyosis – two conditions that are finally beginning to be better understood and treated. It took me years, countless hospital and doctor visits, uncomfortable procedures and surgeries, and finally, a visit to a renowned specialist to figure out what was wrong with me. I knew – my father’s mother has struggled with endometriosis her whole life, and so has his sister – but I was 25 and the doctors didn’t believe me. During my visit with the specialist, they laid it out to me and my then-husband: I definitely had endometriosis, and most likely had adenomyosis, and if that was the case upon surgery the following morning, I would need to have a hysterectomy as well as remove the endometriosis. It was a life-altering decision and one not to make lightly as it permanently impacted the course my life could have taken, but it was more important to me to get my actual life back so I could have a future. This was summer 2009.
**
In fall 2009, my father and my stepmother unexpectedly and elatedly announced they were having a baby. They had been trying for close to a decade, during their travels around the world, and unfortunately, nothing thus far had worked. It was, of course, when they stopped worrying, settled down and bought a house, and relaxed that nature stepped in and helped them out. In January, my stepmother was put on bed rest due to complications, and my baby brother was born prematurely in February 2010. Not only was he premature, but he was battling an uncommon birth defect: his heart was nearly twice the size it should have been, while his body was tiny. It turned out he suffered from a very rare syndrome and he spent most of his early days in specialty care wards in Boston hospitals. My father and stepmother cared for him tirelessly, and he eventually was able to stay at home.

Tragically, the peace was short-lived. I never met my brother Gus. As his health improved, my family told me I could meet him when I flew up to visit that summer since I lived in Georgia. But one night at home, he stopped breathing. I was in a rock band at the time and I got the emotional voicemail from my father between sets during a gig in May 2010: “I’m calling to let you know….Gus passed away today.” I had to get back on stage and play another two hours of music, carrying that knowledge.
**
In November 2010 I made the difficult choice to leave the marriage I was in. My ex husband was a good man but as life went on, I realized we were not a good match. Our life goals were very different, and our relationship needs were very different. I struggled with that decision for a long time – and that’s partially where my “30 Before 30” list finally came into play. I made the right choice, but it wasn’t easy.
**
During the summer of 2011, my stepmother called me one afternoon while I was walking my dog. “Your daddy and I are splitting up.”

“I’m sorry, what?” I didn’t think I heard right. Sure, I’d made similar phone calls only months earlier, but I didn’t think they would split up. They’d lived and traveled the world together, and been through so much. I knew losing a child was difficult but I hoped they would be able to stick together and lean on each other.

“We are getting a divorce,” she said again. “I am moving to New York.” I too was moving back to New York that fall, once I saved up enough money to make the move up the coast.
**
In November my dog and I made the move back to New York. My dog had been my constant companion over the last few years, despite all the changes in my life. I scheduled a new patient appointment for her with her new vet, and asked them to take a look at a tumor her vet in GA had told me was normal. “I don’t like the look of that tumor,” the vet told me immediately. “Can she come back in next week so I can remove it and biopsy it?” And within our first ten days in New York, my dog was diagnosed with mast cell cancer and given 3-6 months to live. She was my best friend, my buddy, the closest thing I would ever have to a child of my own, and now she was dying. I spent as much of my time as possible with her that first year back in New York, and tried to make sure she was happy and comfortable, despite the multiple surgeries, medications, and discomforts she endured. If you’re a dog lover and you have tissues handy, you can read all about those final few weeks together here.
**
My father was sent to a job in Las Vegas in spring 2012. He told us, “This is the job I’ll be able to retire from. I’ll be here for a few months, but it’s a good job.” He had spent his life as an engineer, setting up power plants over the world, and this one final domestic job would be his last big travel job. He sent me an email telling me he was dealing with what he thought was a bad MS flare-up: “I can’t feel anything below either of my knees all the way to my toes. I am having a very hard time walking – it looks like I am drunk. I’m hoping like most cases of MS that this will pass soon and I will get right back to normal.” Less than a month later I got a phone call that he was in the hospital, paralyzed from the waist down, and the doctors didn’t know what was causing it. He couldn’t walk, had no feeling, and the doctors weren’t doing any rehab or strengthening work on his upper body. It took weeks but  he was Medevaced to Boston, where  they changed the diagnosis from MS to the bone spur and subsequent neurological and nerve damage.

My brother, his wife, and I drove to Boston to see him the night before his initial surgery. He had aged about 20 years since I’d seen him last: his fiery red ponytail was now gray and his face was covered in weeks of gray stubble. Morphine was being pumped into him from an IV. “Why did you guys come here?” He grumbled at us. We didn’t have much to say. “We wanted to see you,” my brother offered. We didn’t tell him the doctors told us he may not make it through the surgery and we wanted to see him just in case.

Well, since I’m writing this now, you know he made it through. He spent the next few months at a rehab facility in Boston, learning to walk again, learning to use braces on his legs and a cane in his hands. I brought my dog to visit him and snuck her into the hospital since I knew her days were limited. I didn’t go anywhere without her at this point. Although not usually much of an animal person, when he came outside a little later and we got to sit and talk, he sat with his hands rubbing her ears. When I had to wheel his chair back in, they wouldn’t let me bring her in, and he wanted to show me how he could move the chair himself. But before we left, he growled, “Where’s that damn dog…” and she came around the chair to kiss him goodbye one final time.

She died the following week.
**
At that point, it became clear to me: my life had loosely paralleled my father’s life for the last few years.

Both of our marriages had ended.

We both lost our babies.

We both faced painful medical conditions with permanently life-altering surgeries.

There are so many more details I can’t fit into this one post, but will be following. That’s when I first really began to know my father.

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