November 27, 2019

By Bobby Talarizadeh

Growing up, Thanksgiving was always my favorite holiday.  I couldn’t wait to wake up and watch the Macy’s Thanksgiving Day parade.  I was always captivated by the enormous balloons floating between the skyscrapers.  I had always hoped that one day I would be there looking up at them as they passed over my head.

Fast forward fifty years and I find myself diagnosed with ALS.  You can imagine that was not in my plans.  When my husband and I received my diagnosis, we decided to take the good of what was left of my time and make the most of it.  My very first thought went back to when I was a little girl watching the parade and that became number one on my bucket list.  But, could we afford it became the question.  As you know, ALS gets expensive fast and doesn’t leave much money for those things we hope we can do before we can’t.

Thankfully for me, I have a daughter who is Johnny-on-the-spot at researching what she doesn’t know or understand.  She found the Gleason Foundation online.  She told us about their grants for adventures and I put together a New York Thanksgiving trip that I hoped Team Gleason would approve – and they did!

So away we went.  We traveled to New York City from Raleigh on Amtrak, which was also a new experience for us.  Our first morning there, we got to see the balloons being inflated.  We also took a bus tour around the city.

On Thanksgiving morning, we woke up and found that the crowd on the street below was already three to four people deep.  We worried about getting a spot on the street due to my being in a wheelchair.  We decided to go to our scheduled breakfast and hope for the best.  When we came out of the restaurant, we saw the crowd had grown bigger in size and was now 8 to 9 people deep. 

As we were discussing what to do, a NYPD Officer passed by and bid us good morning, then continued down the street toward the parade route.  After he had gone 10 to 12 steps, he stopped, turned around, and asked us if we were also heading to the parade.  We said yes and he responded, “Okay, follow me.”  He led us up to the parade route where the street had been barricaded.  There was an empty section that the NYPD had blocked off.  He asked another Officer to open up that section and they allowed us to move to the front where we had an unobstructed view of the parade.  To us, that was a small miracle from God.  We were the only people in that section until the parade got close to us, then they opened it up for others.

That evening, we went to our scheduled Thanksgiving dinner at a very upscale, trendy New York City restaurant.  We were the first to arrive and the hostess began saving tables based on the order people arrived.  When we were escorted to our table, we found it was the best seat in the house.  The restaurant was situated directly on time square with floor to ceiling windows providing one incredible view.  We could see the New Year’s Eve ball from where we sat.  It is smaller than it looks on TV.  The food was delicious.  We were told by the hostess that people pay $3000 per person to sit in that restaurant on New Year’s Eve and watch the ball drop and the festivities below.
Our only mistake on the whole trip was trying to go Black Friday shopping at Macy’s on 34th Street.  Even though this was also something I had always wanted to do, it didn’t turn out like I had envisioned.  There were more people than I expected, it was hard to maneuver my wheelchair, and it was impossible to catch an elevator.  However, we did get to see Santa and get a picture.  He asked me what I wanted for Christmas, but I couldn’t tell him because my Bulbar symptoms took over and I couldn’t stop crying.  My husband told Santa that I had ALS and I really hoped to be healed.  Santa knew he could not give me what I wanted.  So instead, he gave me one of the biggest, warmest, most engulfing hugs I’ve ever had and said, “I love you.”  That, of course, made me cry harder, but I appreciated him being real and kind with me.  It is now one of my most cherished memories.
On our last day in New York City, we visited Bryant Park, the M&M store, and strolled around Times Square one more time.  Then we went back to our motel to change into our nice clothes and headed out to see a Broadway play.  The play was “To Kill a Mockingbird” and starred Ed Harris as Atticus Finch.  It was a fabulous experience!  Afterward, we went out to a fancy dinner since we dressed for the part.  We then went back to the motel, changed into warmer clothes, and took a taxi to Rockefeller Center.  We went up to the “top of the Roc” and took in the spectacular view of New York City at night.  We then went back down and watched the people skating at the ice rink.  Unfortunately, the Christmas tree was not yet lit, but the angels were up and it was still a beautiful sight to see.  The next day, we took the train home.
I wish there were better words in the English language than “thank you” to express my gratitude to the Gleason Foundation for sponsoring this adventure for my husband and I.  Mr. Gleason, I am sorry you have ALS.  I am sure this was not in your plans either.  But I want you to know that God is using you through your illness to make a difference in way more people’s lives than you ever would have if your original plans for your life would have been accomplished.  Thank you to the Team Gleason staff with a special shout out to Margaret Leatherbury for their coordination and helping putting our trip together.  For me, this adventure successfully closes one more chapter in the book which is my life.