Love, life and loss … while on the road

On September 13, 2010 at 6:15 a.m. EST the world lost an amazing woman, my grandmother. She died in her sleep and in no pain, surrounded by her husband, her son and his wife, and her daughter, my mom.

And I was thousands and thousands of miles away.

I knew it would happen. The possibility of her passing while I was traveling was very real and I was encouraged to still make plans, to take that flight from Dulles to Heathrow on March 7.

Grandma was my biggest supporter.

“Are you sure it is OK for me to go and do this?” I had asked my mom repeatedly.

“Yes,” she would answer calmly. “Grandma wants you to go. She doesn’t want you to miss this opportunity and wait for something to happen here.”

So, I boarded the flight and headed out on my adventure.

At first, everything was wonderful back in Pennsylvania where she and my grandfather had moved only months earlier.

ALS, what she had, is a cruel, cruel disease. It atrophies your muscles, and often times one of the first signs is limping. She had a limp, but we hadn’t noticed anything was wrong at first, nothing that would scream “fatal disease.”

When I moved to Atlanta, I was thrilled to be closer to home and closer to Florida, where my grandparents were living. I went to visit them a handful of times in the year I lived in the South.

And each visit, she got worse. At first she was just slurring her speech (a mini-stroke Mom had suggested), and then it got difficult for her to swallow. And then she started using a cane, and then a walker. By the time Thanksgiving rolled around last year, she had a hard time even with that.

The first e-mails I got hinting that all was not well was in May, when I was in Madrid.

“Grandma has told us she doesn’t want a feeding tube,” Mom had written. The doctors had suggested it as a means to slow down the progression of ALS.

Immediately, I burst into tears, Anthony at my side.

I called my mom and she reasoned with me. This was Grandma’s fight. If she didn’t want to prolong it, she didn’t have to. We had to support it.

I called her a few days later when I was in Merida to wish her a happy Mother’s Day. She talked to me, but ALS had taken away her ability to form words so all I heard was noises.

A few months later, when I was in Bulgaria, Mom e-mailed me to tell me she had stopped eating.

I knew she was in Penn. with her parents, so I hopped on Abby’s Skype and called them.

Through stifled cries, I told her I loved her and she made noises back. I know she was telling me the same.

Then, a few weeks later, I got word she wanted to be transferred to a nursing home.

I knew it wouldn’t be much longer.

In Sarajevo, once I had my iTouch and had installed Skype, I called my mom and for the first time in a long time, we talked. And cried.

I don’t want to be here when this happens.

When we spoke, she told me she had showed Grandma my blog about going topless. Before she had stopped using the Internet, Grandma read my blog regularly and would write to me, telling me in each e-mail how proud she was of me.

This time, Grandma had requested a print out of my blog so she could read it.

Two days later, when I was in Mostar, I got word she had moved to the home and had told everyone via written word she was “ready.”

I did what I had to do — I wrote her an e-mail telling her how much I loved her, how I remembered crying each time her and Papa would leave our house after their annual summer visits, how I loved going to Disney World with them, and above all, how much I loved the support she had given me through my life, and told her in a million ways how much I loved her, and that, if she was ready, I understood.

Two weeks later, on a sunny Monday afternoon when I was in Croatia, her body was finally ready. Her mind had been for a long time.

The day before I had spoken to Mom and she told me things didn’t look well, that she had packed her clothes and was staying until …

I hadn’t known how to react. As she talked, I slid down the old stone wall of the hostel, burying my head in my hands and talking in hushed tones through tears.

“I am so close to being home,” I had sobbed. I changed my flight the week before with the hopes I could make it home to hold her hand and tell her I loved her one last time.

I never got to do that in person.

The night before she left this world, Mom put the phone up to her ear and I told her I loved her.

I HATE ALS. That this disease leaves the mind to KNOW the body is shutting down and there is nothing that can be done about it.

Mom and I had an agreement — no e-mails about anything. If there was news to be delivered, it had to be via the phone.

Sunday night I didn’t sleep. I wasn’t interested. I closed my eyes, but nothing happened.

Monday, I woke up, called my Dad who reported he had heard nothing overnight. I went to the beach. I tried to enjoy it, but nothing felt right.

Today is the day.

I tried to take my mind off of what was going on at home and focus on being in the moment since I only had a few days of being in the moment left.

I boarded the water taxi and headed back to Hostel Trogir and loaded my e-mail.

“Give me a call, Love Dad,” was written in the subject line.

Instantly, I knew. And instantly I began to cry. Painful tears of heartbreak and alone.

“Dad,” I said into my headset, barely audible through my sobs, expecting what he was going to say.

“I’m sorry, D,” he said somberly.

“I was so close …”

“I know.”

He told me what had happened. He reminded me she wanted me there and that I needed to be OK with that since that was what she had wanted.

Then, I called Mom.

“I’m so sorry you are so far away,” she said softly as I sobbed on the other end of the phone. I could barely talk. “D, she was so, so proud of you. This morning, one of the nurses came up to me and asked if I had just gotten back from Europe. She told everyone about what you were doing.”

More tears.

We said our “goodbyes,” our “I love you’s,” and I sat on my bunk bed, tears rolling down my face with reckless abandon.

The hostel owner had given me the dorm to myself, thank goodness, so I could wail softly and not worry about others asking me what was wrong.

Then, I went numb. I started looking for hotels in Zadar for my last night in Croatia. I called Old Town Hostel, where I had stayed a few days prior when my hotel options had failed.

“I just need a bed, I have a flight from Zadar Wednesday morning,” I had explained.

“All we have is a private.”

Perfect. I could grieve and mourn without being around anyone.

Then, I walked into the city.

Expressionless. Like a zombie. I wandered the marble streets while blaring on repeat Citizen Cope’s “Sideways.” I probably listened to it 100 times in the two days this was going on.

I got some blood orange gelatto and smiled politely when the shop owner asked for my number. I sat at a restaurant on the water and ordered garlic bread, tuna salad and a glass of red wine. I picked the corn, tomato and egg out of the salad and struggled to get it down. I ate the garlic bites of the bread. I drank the wine.

I walked back to my hostel and took out my flat iron and straightened my hair, all the while trapped in my thoughts, running like wildfire through my mind. So close. ALS. Pain. Heartache. ALS. Love. Life. Loss. Far from home.

What do you do when you are alone and grieving? When you know no one?

Normal conventions don’t apply. No amount of virtual hugs replaces the real thing. No amount of phone conversations replaces face-to-face contact.

I was alone.

And then, I sat down outside in the late summer night and pulled out my laptop and wrote this story.

Grandma, you will never be forgotten. Your love and support meant and will always mean the world to me. While we may not have you here, I know you are now a star in the sky, looking down on me for the world to see. Mom said you agreed to be my guardian angel. Thank you. My book is for you. You will read it over my shoulders. I love you forever and always.

To learn more about ALS, click here.