My StoryDec 19, 2020
*This article was originally written and published for Love What Matters. Read it here. *
“365 days down, forever to go.” These words came from a letter my husband, Ian, wrote to me for our first wedding anniversary. It was June of 2019 when I found it stuffed away in my underwear drawer and re-read it. Ian had passed away just 3 months prior. ‘Forever to go.’ The tears flowed as I realized how I had not only lost my husband, my soulmate, and the father of my two children, but I also lost our beautiful future together.
I lost our forever — our dreams of growing old together, of watching our children reach milestones and seeing them grow up. I lost my identity as Ian’s wife, his partner-in-crime, and in life. I lost my direction and purpose in life — our shared dreams and goals. I lost control over my precious world. I lost confidence in my ability to survive. I lost myself.
Yet, what I’ve discovered in the process of losing everything, is there is so much more in life to be found. My husband’s death has taught me how to search, how to ask the right questions to find meaning in his loss, lessons in life’s hardships, and love in the pain. When I reflect on our journey together — searching for answers and connections to make sense of it all — I can now see everything happened for a reason. So let’s start at the beginning!
I remember passing Ian in the hallway of my freshman dorms and immediately getting butterflies in my stomach. I was magnetized by his surfer body and bronzed skin from playing in the Hawaiian ocean, and enamored by his kindness, his sense of humor, and his carefree, go-with-the-flow attitude. His smile melted my heart and his ability to make me feel like the most intriguing person in the room had me hooked.
If one word could sum up our relationship it was FUN! We loved going on adventures together and feeding off each other’s positive energy and exuberance for life. We made the most out of every moment together and didn’t plan ahead into the future. Marriage? Kids? We didn’t think about it. We lived in the now, a mentality that would serve us during the challenging times to come.
It was 2011, and Ian and I were on a ‘break’ to pursue our careers and personal ambitions apart from each other. I was in graduate school in Pittsburgh and Ian had a hotel job in Beijing, China. Despite the break, we still would check-in from time to time. I was busy working at my internship when I received a call from Ian. I could hear his tears. His fear. His desperation. He had woken up one morning and couldn’t see, so he went to the doctor and they found a tumor in his eye. Cancer!
My heart sank. Ian and I were both 24 and just starting out our lives, but he had been served this massive injustice. He had Uveal Melanoma, a rare cancer that affects approximately 2,000 people a year, most of whom are elderly and near the end of their lives. The odds were okay if the cancer didn’t spread beyond his eye. But if it did… it was fatal. Ian was young. He was strong. We were primed for the fight.
Ian’s original cancer diagnosis was a turning point in our relationship and in our life. We both grew up. We both realized what was truly important. Ian’s career goals of becoming a general manager, his plans of adventuring through Asia, of catching the best waves in Bali — all of it quickly dissipated as he faced his mortality. That’s what happens with a terminal diagnosis. Dreams disappear when survival is at stake. As Ian looked toward his potentially dire fate, he decided instead to focus on the present and make the most of it. This meant proposing to me, getting married, and starting our life together.
People are often surprised to found out I married Ian knowing he had cancer. In fact, 2 weeks before our wedding his doctor told us Ian needed to get his eye removed. Radiation wasn’t working. The tumor was growing. I guess I had faith. I chose the moment over the future. I chose love over fear. And, looking back, I can’t imagine choosing otherwise. Our wedding and honeymoon were the last times Ian saw me from both eyes. With Ian’s eye and tumor removed, we thought things couldn’t get worst. We were in love and had high hopes for the future. But we were wrong.
We were at the beach in San Diego. Ian was chasing our 2-year-old daughter Izzy around in the waves, kicking up sand and grinning from ear to ear. Making Ian a father was the greatest gift I ever gave him. He was loving and playful, but also protective and even stern. He took his fatherly duties seriously and wanted the world for his kids. My pregnancy with Izzy had actually come as a surprise! We both weren’t really ready to be parents. In fact, we weren’t planning on starting a family until I turned 32 — an age Ian will forever be. If it wasn’t for our ‘surprise,’ he never would have become a father.
I watched Ian and Izzy playing on the beach that day and felt Theo kicking in my stomach. Life was good. All of a sudden, Ian’s smile changed to worry. His physical therapist, who was treating Ian for lower back pain, had called and told him his MRI showed tumors all over his spine! We rushed to the ER, looking for immediate answers. Hours in the ER turned into days in the hospital filled with scans, more waiting, and serious conversations. We finally found out Ian’s Uveal Melanoma had metastasized to his spine, lungs, and abdomen. Stage IV.
I can still feel Ian’s arms wrapped around me that day. Grasping me tightly as we both sobbed away our future dreams. We held each other as if we were holding on to that one moment in time — the only certainty we had left.
The news of Ian’s metastasis was devastating. Most patients with uveal melanoma survive 6-9 months after the cancer metastasizes and there is no cure. Just one FDA approved drug with a grim success rate of 11% and it was for melanoma, not uveal melanoma. The facts told one story, but Ian and I told another. We were still going to beat this.
For 15 months, Ian and I flew back and forth to MD Anderson, a prestigious cancer center in Houston, to enroll in experimental studies in search of a miracle cure. Some drugs made him deathly ill. On one trip, we couldn’t return home because Ian was shaking violently with the chills, then profusely sweating in between bouts of vomiting and diarrhea.
During this time, we survived by living in the moment. Each doctor’s appointment, each scan, and test result determined our fate. Would Ian live? Did the drug buy us more time? And if not, then what do we try next? The future was too scary… too dark and unknown. So we didn’t go there. We made the most of the time we had and relished every second of it, knowing tomorrow was never guaranteed.
This reality set in for me on New Years Day of 2019. Ian woke me up in a panic, exclaiming he couldn’t move or feel his legs. Another ER visit revealed a massive tumor pressing against his spinal column. If they didn’t operate immediately, he would be paralyzed from the waist down. Ian’s emergency spinal surgery went smoothly, but the doctor had little hope Ian would ever walk again. The news crippled me. I knew if the remainder of Ian’s life was to be in a wheelchair, then he wouldn’t have the will to fight. The cancer would win.
This was just speculation, and Ian would be the first one to point that out. Instead of worrying about Ian’s future recovery, I turned my attention to the now. After two weeks of rehab, Ian walked out of the hospital. Shortly after this incident, Ian told me he wanted to return to his hometown in Hawaii. He was worried he was running out of time. In February of 2019, we packed up the family for a 3-week Hawaiian vacation. In the back of my mind, I knew Ian wouldn’t be coming back.
We made it to Hawaii. As Ian crinkled his toes in the sand, waded in the crystal clear, aquamarine water, ate at his favorite restaurants, and spent time with childhood friends, I could tell how much he was savoring his final moments. He wanted to surf and swim — to enjoy the life he used to — but cancer pain kept getting in the way. Ian went to the hospital in Honolulu for pain management.
‘Ian is dying. There is cancer everywhere! Did no one tell you this?!’ His bedside manner wasn’t great, but the local oncologist’s words were exactly what we needed to hear. Ian was dying.
Ian started hospice in a beautiful beach home that had been donated to our family for this difficult time. The home overlooked the Mokolua’s, a set of twin islands Ian had grown up paddling to and surfing around and later became his place of freedom, peace, and light in a body full of pain.
We celebrated our son Theo’s first birthday on Ian’s second day of hospice. Ian seemed to be doing well, upbeat, and enjoying the party. But the day after, he took a turn. He could barely make out a word. The knot in my stomach grew bigger as I watched my husband slowly fade away.
The 25 days that followed were surreal. The reality my husband was dying hadn’t sunk in. I felt like I was just floating by, not really feeling or processing anything, just numb and going through the motions. I would make Ian breakfast, help him eat, bathe him, guide him to the bathroom, give him medicine, and then take turns with his friends who kept him company by his hospital bed.
Izzy would visit daddy, massaging his hand and giving him kisses. Theo had a harder time, as he tended to accidentally pull at Ian’s tubes or move too spastically for Ian’s fragile state. Izzy would ask me what was wrong with daddy, so I told her:
‘Daddy is sick. He has cancer. Cancer isn’t a cold or something we can catch. We didn’t give Daddy cancer either. None of this is your or my fault. We are trying to make Daddy better, but there is a chance Daddy will die.’
She stared back at me with her big brown eyes, still searching for meaning in these answers. As much as she was searching, so was I.
Before Ian died, I wrote him a letter. I wanted to tell him three important things. 1) how much I loved him, 2) how much of an impact he made on my life, and 3) we would be okay. I read it to him one afternoon, and slightly dazed from the morphine he replied, ‘Emily that is so nice of you! Is it my birthday? Did I do something special?’
I laughed and answered, ‘No, Ian. I just want to tell you how much I love you. It’s a love letter!’
‘Oh! Okay,’ he agreed contently. After I said everything I needed to say to Ian, I was ready to let him go. To end his suffering. He deserved a better life than the one he was living.
Ian passed away on March 26, 2019. He left us just as the sun was rising, before the kids and I woke up, and when the night nurse had taken his coffee break. Ian went alone, probably with his surfboard to catch the first waves of the day.
I cried, tears of sadness mixed with relief. Although my worst nightmare had just come true, I felt a strange sense of peace. I asked Izzy if she wanted to say goodbye to her daddy. At first, she hesitated, but then she grabbed my hand and asked to go see him. We entered the room where Ian lay lifeless. Her grip tightened as we approached his hospital bed.
I can still hear her timid, confused and innocent voice as she softly said, ‘Goodbye, Daddy.’ We stood there for a second and then she looked up at me and asked, ‘Can we go?’ I nodded my head and we left. We walked to the beach and when we came back, Ian’s body was gone. They took him to the mortuary to be turned into ashes so he could be spread in the water by the Mokoluas, at the top of Winter Park mountain in Colorado, and in two viles I’m keeping for my children when they are old enough to have them.
When Izzy entered the empty room she looked at me in astonishment. ‘Where did he go?’
‘Up in the sky,’ I answered.
‘Yes, Izzy. Just like that.’
Every so often, Izzy and I light a candle before bedtime and we stare out into the starry sky. We talk about Daddy and how he’s out there watching over us. How he’s so proud of our family of three and how we are all still connected by the invisible string of love. I’ve learned how to maintain my relationship with Ian, even without him physically here. I ask him questions and seek his guidance, and if I’m still enough to listen, he provides me with the answers.
It’s been almost 2 years since Ian passed away and there are still times I can’t believe this is my life. In the months following his death, I outright refused this reality. I fought it with anger, with anxiety, and with guilt. And, when the overwhelm of my emotions and the reality of my new normal made me feel so hopeless and paralyzed, I turned to fitness to cope. When I moved my body, I could safely feel my feelings— no matter how hard or painful they were — and take back power in a world where I felt ultimately powerless.
6 months after Ian died, I started moveTHRU. moveTHRU connects anyone who has experienced a loss and helps them cope with grief through exercise. It’s an intention-based workout to embrace your emotions instead of suppressing them. It’s a community that supports and empowers one another through grief, and it’s a call-to-action to keep moving forward and loving life, no matter what it throws you! moveTHRU has helped me heal and give meaning to Ian’s death by helping others heal.
Losing Ian has proven to me life is unpredictable. We think we have control, but we don’t. I’ve learned the only way to live is to ultimately surrender to the forces outside us, and bring the focus within. In doing so, we are able to seek the lessons in hardship, recognize the gifts in each moment, and trust everything will work out in ways we never imagined (or even wanted in the first place).
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