ALS Can Kiss My A$$ by Lisa Ruffolo: 2015

If you’re wondering who's writing this it’s me, Lisa Ruffolo, and I have ALS. Well, truth be told a girlfriend of mine is helping me compile my thoughts and do the typing. My right hand is already like a stubborn two year old throwing a tantrum in the aisle at the grocery store. I’ve rolled my eyed at it and am choosing to carry on anyways.

This post in the first entry on my blog (can't believe I just wrote on my blog...who da thunk?). The first glimpse into what it feels like to me to live with ALS. I’m not sure what I plan to blog about or where this will take me; but if you’re interested, I hope you’ll tag along for the ride. Now on to the story at hand...

A Night To Remember

Usually before a big event I am nervous; the butterflies are present. That night was different. I realized that if someone didn’t like something about me, I really didn’t care anymore. I reminded myself that everyone who would be in attendance was going because they cared about me, cared about my family. No one would be looking for something wrong with me, a reason to make me seem not good enough.

Nerves aside, all I felt was excitement. A good friend had done my make-up, and I had gone to the hairdresser that morning and sat in that chair for a few hours. I recall chit chatting, but all the while lost in thought about how the night would unfold.

All day long I fought the fatigue. Desperately wanting a nap and yet not wanting to ruin all the time I had spent getting my hair done. I still managed to engage in several redundant conversations in my mind. “You’re tired just go lay your head down gently on the pillow….Don’t fall for that one Lisa, you know you'll wake up looking like a rat has made a nest in your fine hair!” So I fought that battle and won. The hours crept by, the excitement growing as the sun dipped out of sight.

I had some idea what the night was going to look like, but really didn’t know a lot of the details. This was like nothing we had done before. We were just to show up and enjoy ourselves. And that we did.

As I walked into the lobby I saw familiar faces, friendly faces, loving faces. I started hugging, started talking. Eventually I was asked to move away from the door, there were so many people waiting to get into the room that we had created a barricade to the entrance. The line-up of people waiting to see me, to hug me, was so long that it felt like a procession line at a wedding. Yet I wasn’t in a wedding dress, no bouquet in my hand. I had looked down and saw the beautiful dress that my husband had bought me for the occasion. That night I would always remember.

Parts of the evening are a complete blur. I couldn’t finish a conversation before seeing someone else, receiving yet another hug, starting a new conversation and then finding someone else’s warm arms wrapped around me. It just kept happening; I couldn’t seem to hug people fast enough. I wanted to be gracious; I wanted to show my appreciation. Everyone had taken time out to come, to support, and to spread love.

If I had to summarize the overall feeling of the night it would be an abundance of love. But along with love, people showed true kindness, empathy, and compassion. All those incredible feelings that fill you with indescribable warmth. Those moments in life that cannot truly be described, they need to be felt, experienced. It was beautiful. It was magical. I didn’t want the night to end.

Out of the 340 tickets sold I would estimate that I knew 80% of the people. Everyone else were friends and family of people who knew and loved me. The tickets sold out in no time, an additional room needing to be booked. Weeks before the Gala there were still so many people who had wanted to attend but couldn’t get a ticket. The outpouring of support was overwhelming.

One of the most touching moments for me involved the middle schoolers walking past me to play their instruments. Looking at their faces, they seemed so young; they were the age of my children. I was hoping that Sophia and Matteo were feeling what my husband and I were feeling. That never before had we been in a room filled with so much love, support, and friendship. In fact, we didn’t really know that level of love was all around us. We realize now that it had been there all along, but we had never needed to tap into it like this before.

We’ve been so lucky that up until now our lives have been blessed with health. We’ve had control over our circumstances, even if things haven’t always gone our way. The issues being manageable, tolerable, and nothing to put on our friends. Like most people, we didn’t share the day to day stressors that all families face. But there comes a time in life when we realize that we do need support, we do need to tap into our resources. And that time for me is now.

My only wish is that I could have stopped time. Could have had all the conversations I wanted to. Could have ensured that all the hugs I wanted to deliver had been received. That the night would have never ended. That we could have danced until our feet begged us to stop. I didn’t even finish my cake…and I love cake!!

The Gala event was put on so that Dino (my husband), Sophia (my daughter aged 15), and Matteo (my son aged 13) and I could take a dream vacation that we have talked about since the children were born. Dino being Italian and having relatives there. I had been asked shortly after being diagnosed this past July what the number one item on my bucket list was. Without hesitation I said it was a trip to Italy. An amazing group of women from my jazzercise group decided to take on that challenge and ensure that I would be crossing this bucket list item off in no time.

The total fundraising from the night including ticket sales, the Go Fund Me account, and the donations received at Coast Capital bank totalled $35,070.92. If you ask me, that is a whole lot of love right there. My number one item on my bucket list, this dream vacation to Italy (which has been booked for March!) is already so memorable, and we haven’t even boarded the plane yet.

I want everyone who had a hand in making that dream night a reality to know the incredible impact it had on us, on me. From my friends on the committee, to all the donations for the silent auction and cake contest, to all those who bought tickets, who donated, who showed up, who wanted to show up but couldn’t get a ticket, and to those who had us in their thoughts that night. To everyone who made the Gala happen. I am thankful from the bottom of my heart.

Here are just a few pictures from the night: