January 15, 2015 - 6:29 PM
"THROUGH ALL THIS TRIUMPH... OUR LOVE BECAME THE STORY OF A MIRACLE. THAT IS WHAT MADE SWALLOWING HIS DEATH SO MUCH HARDER."
VERNON - We got to know Alisa and Ryan Langley last summer shortly after they married. You might remember the video: friends gave them a surprise dream wedding they once thought wasn't even possible.
Shortly after they met and started dating, Ryan developed non-Hodgkin lymphoma, a terminal disease.
They told us their sad and wonderful love story last August. If you aren't familiar with that story, you might want to start there to learn about their special relationship.
Ryan died Dec. 27.
We contacted Alisa earlier this week, wondering if she would share the rest of her story. Here, in her words, edited only slightly, is her beautiful story of love and loss.
We were given one more year than all the medical experts predicted.
In that year, Ryan got back on his dirt bike and we went for our first ride together even after they said he would never walk again.
He proposed. The day he was discharged from hospital after not eating or drinking for five days, he baffled doctors and miraculously revived. He got down on one knee at a high school reunion of all his friends. We lived in Vernon Hospice together for three months where he was bedridden and told he would never bare weight on his legs again. He smiled at the doctor and said 'that is your opinion.'
Indeed he stood while I walked across the field and down the aisle towards him and when we locked eyes, the rest of the world melted away and all I could see was him. It was the most beautiful, spiritual day of our lives. We stayed until the early morning hours and then took to the streets of Kamloops in our rented convertible Mustang with the top down blasting 21 Pilots and our favourite tunes. As soon as we were out of sight, we stopped the car in the middle of the street and made out like we'd just robbed a bank. We laughed with embarrassment the next morning when we realized the nurse had been following us the whole time.
We discharged from Hospice as the nurses gathered around, emotional and proud to see us off, stating that Ryan was the exception to every rule. We made it to Vancouver and bought our own convertible Mustang and Ryan installed a hitch carrier for the wheel chair. We went to his alternative treatments every day, twice a day in Mission and in between we would amuse ourselves with eating and shopping and catching up with friends. It seemed like maybe his determination and my dedication was the magic ticket.
He believed that as long as he kept eating, drinking, and going to the washroom he could stay alive. I believed that as long as he was in my sight, nothing could happen. We were safe together.
Through all this triumph, Ryan, and our love, became the story of a miracle. That is what made swallowing his death so much harder.
"YOU KNOW HOW ALL THOSE PEOPLE MAKE YOU FEEL? PUT ALL OF THEM TOGETHER AND THAT'S HOW YOU MAKE ME FEEL."
It was engulfing him, the disease and the pain. He was being tortured alive and yet he insisted that our late night conversations, lying next to each other and holding hands until 3 a.m. were worth all the pain in the world. He became very sad and emotional the last couple weeks as his movement became limited to lying in bed and so did I. We could both sense it. We would just hold each other and sob. He would say sorry over and over again and so would I. I told him I loved him and that I was so proud. That he'd done a good job and did everything right and he told me he could have done none of it without me.
We both knew it was time to go into palliative care but we both stalled. We knew this time he wouldn't be coming back out. As we waited for the ambulance, the home care nurse gave him a sponge bath and shaved his face and I packed up our whole life and had time for a shower. The paramedics were amazing and gentle and wheeled Ryan outside for what would be his last glimpse of fresh air. They apologized for the downpour but Ryan gulped it in. They let me ride in the back and I fought back tears and stared out the window and realized I had never wondered about the people or the stories driving by in any of the ambulances that have passed me by.
I would now.
Within minutes of arriving, we felt at ease. He was given a window view. They were supportive of our continued use of holistic methods and they wasted no time managing his pain. Within hours, our room was flooded with friends and it didn't stop even though it was the holidays. When we had a moment alone, I hugged him and held his hand.
"Isn't this special? Doesn't it feel so good to have all these friends who love us and are willing to spend their holidays in the hospital with us?" I asked. And he replied: "It is. You know how all those people make you feel? Put all of them together and that's how you make me feel."
As his body deteriorated, his spirit only grew so that by the end, all he was was love and everyone could feel it. He was so open and receptive and he told the counsellor,
"I used to be one of those guys who had a hard time saying I love you to the people I loved. Now I say I love you to perfect strangers and mean it."
"I DONT KNOW IF I WILL BE ABLE TO BE OK THAT LONG WITHOUT YOU."
Our Christmas day was truly the most special holiday I've ever had and I will hold on to it forever. The sheer delight and surprise on his face when his mother, Shelagh, and I showed up with a grocery cart of presents was priceless. She gave him a three drawer office organizer so he could "Martha" to his heart’s content. He carefully unwrapped the crystals and gemstones I had selected for us and he placed them along the table beside him and put his new omen intuitively on his stomach. It’s called carnelian but he playfully referred to it as "Cornelian" because everyone called him "Cornboy." The fiery blood-red stone helps one accept the cycle of life and alleviates fear of death. It is the highest energy stone on earth.
Our four wonderful friends spent Christmas afternoon with us and we exchanged small gifts and enjoyed champagne. Later that evening I pulled my cot up beside Ryan's bed and we fell asleep to Gilmore Girls and I held his hand all night.
This was supposed to be my family's turn for Christmas and my grandparents were flying in from Arizona, but I knew with his worsening condition we would never make it back to Vernon. But Ryan insisted, now that he had 24-hour care, that I go be with my family and re-charge. I tried to talk him out of it, but he wouldn't have it and I knew if I didn't take the chance, I wouldn't get another one. We spent Boxing Day morning together and then I got the text that my ride was five minutes away. I began to rush because I knew if I hesitated I wouldn't leave. He drew me in and held me and I burrowed my face into his neck as Shelagh turned to face the window to hide her tears.
"I want you to be happy with your family and tell them I love them, especially your Dad and I want you to take your time and not rush back," he said.
"I don't know if I will be able to be ok that long without you," I choked out the words.
"You have to be," he demanded. "You have to promise me."
I told him that no matter how far away I was, he would always be in my heart. And with that we kissed and I began to walk away. I turned just before the curtain and looked back at him and he was staring back at me with the saddest eyes I have ever seen. In that moment I wanted to run back and fling myself on him and cry out not to let me leave but I couldn't. I had to be brave for him, I couldn't let him see that I was scared because he relied on me to uphold our belief. I began to walk down the halls of the hospital and my knees grew weak and light got dim and I could feel the walls closing in around me. I had the strangest feeling that it was the last time I would walk those halls but I kept going until I made it outside. The sun was startling and I closed my eyes and tried to shake off the feeling, all the while feeling very small and lost. The honk of my friend’s horn brought me back and I climbed in and brushed the tears away and prepared for the journey home. After all, he'd made it through so much worse, he would make it through this too.
I texted him pictures of our cat Clover, because he had asked if there was any way I could bring her back with me. I took comfort in the warmth and laughter of my family. I went to sleep that night and decided against calling him because I didn't want to wake him if he was finally sleeping.
The ringing of my phone in the pitch black startled me awake and I answered to hear his mom's voice on the other end.
"Alisa?" Shelagh said in a low shaky voice. "I think it's time."
"No!" I said vehemently, like if I said it strong enough it would be wrong.
"His breathing is slowing and he's turning grey. Do you want to say goodbye?"
She put the phone to his ear and I have no memory of what spilled out of my mouth.
"Oh my God he's stopped breathing. Alisa, where's your mom?"
"No Shelagh!" I screamed at her.
She threatened to hang up on me and call my mom and I screamed no again. That spurred me into action and I leapt out of bed and started running up the two flights of stairs all the while clutching the phone and howling into it. I made it to my parents' door but by now I couldn't form words, just sounds. They bolted out of bed and my mom tried to run for me before her legs were working and hit the ground. She crawled the rest of the way to me and pulled me back onto the bed. My father later told me he could have sworn it was a four-year-old little child standing in that crack of light.
I could no longer hear or see and my whole body shook with agony.
"He made me leave! Why did he make me leave?" I cried over and over again.
Another body was at my side and it took me half the morning to realize it was my brother holding me up. He said he didn't even recognize what had woken him up but it made him leap out of bed and run into the hall. When he saw our parents' bedroom door open, he knew.
I no longer recognized the sounds that were coming out of me and I never knew it was possible to feel so much pain. It tore me apart.
"IF I CLOSE MY EYES I CAN FEEL HIM LYING NEXT TO ME WHICH ALWAYS GAVE ME THE GREATEST SENSE OF COMFORT... I HAVE BEEN ABLE TO SLEEP LIKE A BABY."
My first rational thought was that his mother was alone and all I could do was keep saying her name over and over again.
"Who should we call, Alisa?" my mom asked. Who would even answer their phone at five in the morning?
"Jane," I said. She was the head of Ryan's dirtbike club and who had been our rock through our journey. Jane answered on the second ring with a crisp clear voice. She said later that even my mom was hardly making sense and all she could hear in the background was me repeating Ryan's mom's name. She was there within half an hour and they never left her side. Next I called his best friend Mike and all I could muster out was that he was gone. I'm betting that is the fastest he's ever driven from Tsawassen to Surrey. They surrounded Ryan and his mother and we skyped so I could see them and look at him one last time. I broke again when I saw his face and they leaned me in to kiss him. He had the most peaceful look on his face with a Mona Lisa curve to his mouth. I had to believe he was in a better place but it didn't stop the grief.
My life partner, my soul-mate, was gone. My man, who told me he loved me every day, who was always in my corner and supported, encouraged, and trusted. Who still told me I was beautiful even if I hadn't showered or changed out of my pajamas in three days. Who loved every quirky thing about me and matched me with his own set of quirks and eccentricities. Who let me in to his most vulnerable places and lifted me up to show me off to the world. My knight in shining armour, my true fairy tale Prince Charming, left me to ride the universe dust and maybe soar through Hell's Gate Canyon to feel the mist on his eagle feathers.
I'll never know for sure. And somehow I have to find a way to be ok with that. Somehow I will have to learn to live in this world without him by my side but always in my heart.
That is one of the most amazing gifts that came out of this journey. Before Ryan, touch and to be touched was my language of love. It meant everything to me. But from the beginning of his diagnosis, physical touch became next to impossible because of his pain. The withdrawals and personal rejection I felt was awful. I just couldn't understand how to give or receive love any other way. As our journey continued, the intimacy between us strengthened and I no longer needed to be in the same room as him to feel it. It is also why even in my sorrow, I have a hard time accepting that he is gone. Because he doesn't feel gone. I still feel him and our love as if he is just in the next room or back in Vancouver waiting for me to come home.
If I close my eyes I can feel him lying next to me which always gave me the greatest sense of comfort. Other than the first night of his passing, I have been able to sleep like a baby. It is a deep, dreamless sleep but it is a welcome refuge. Perhaps it is his way of letting me know that his love hasn't gone anywhere. It will still be a long time before I can function in the real world but I will embrace life again and each day as he would have done anything for one more. For now I will heed his advice to take my time, enjoy my family, and not rush back.
To contact the reporter for this story, email Charlotte Helston at firstname.lastname@example.org or call 250-309-5230. To contact the editor, email email@example.com or call 250-718-2724.
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