New York Marathon - Nov. 3, 2019

The 2019 NY Marathon was my first marathon.  I had attempted this same race in 2017, but due to health issues stopped at mile 18. 

For starters, I actually slept pretty well Saturday night. We got up at 3am, I did my
nebulizers and then we headed out around 4:15 to get our bus, which left at 5:15.

I’m not sure what time we arrived in the start village but we were probably there for
about 3 hours. I was in the athletes with disabilities tent, and it is truly inspiring to see
all these people overcoming  some form of difficulty to complete this race.

One of the things I noted that felt so different from 2017 was my energy level before
we started.  I remember sitting in a chair in 2017 and feeling like I didn’t have the
energy to even eat breakfast.  I knew then that it wasn’t a good sign. This year I felt
rested and energized.

                                                                                                My plan to use one of my batteries before the race worked out great. I
                                                                                                changed it out about 15 minutes before heading to the start. My first race
                                                                                                battery lasted to about mile 9. I think the 2nd one took me into mile 19.
                                                                                                The 3rd and 4th batteries were smaller and lasted half as long, so I needed
                                                                                                2 more battery changes to get me across the finish line.

                                                                                                My wave started at 8:52. There weren’t a lot of us in this first wave. It was                                                                                                    mostly for hand cycles and those disabled athletes who are slower.

                                                                                                What was pretty cool is that we got to see the elite wheel chairs at their
                                                                                                start, the elite women fly by before we were off the bridge, and the elite
                                                                                                men went by somewhere between miles 3 and 4.

                                                                                                The first ten or so miles went pretty quickly. I was a little concerned I was
                                                                                                going too fast. The bridges and hills were not an issue. Total elevation gain
                                                                                                during the marathon was 553 feet. My 23 mile training day 4 weeks before
                                                                                                was 1283 feet.

I’m not sure what mile it was, probably between 6-9, I heard my name and it was a PCD (Primary Ciliary Dyskinesia) mom, Serena. We’ve known each other through Facebook – this was our first in person meeting. She was at another spot, up in the double digits and then I think she joined us somewhere in mile 22, and walked with us to finish line.

We had a planned stop at the medical tent at mile 13, right at the start of the Pulaski Bridge. This was to pick up the 2 single batteries and drop off the used double battery. I also took a few minutes to text a friend who was going to try and pick up the used battery before the medical tent packed up.

I did make a short stop on the Queensboro Bridge. My right shoulder was really hurting from carrying the oxygen concentrator, so I took it off and Ed rubbed my shoulder for a minute or two. I was able to step off to the side and have a ledge to lean on.

As I approached the mile 18 marker, which is where I’d stopped in 2017, I saw a new
friend (we met Friday), Rebecca, cheering and went over to get a hug and meet her
husband. It was so cool to see her  there. She had no idea of the significance of that
intersection. It was another example of how different this race was. We were still
ahead of the course shut down and I didn’t have any concerns about how much
longer we’d be out there. In 2017 I had stood at that intersection with almost no one
around.  They were packing everything up and I knew if I continued on I wouldn’t have
any course support.

As we made our final cross back into Manhattan the sun was starting to set. I’d dressed
in layers so I was comfortable for most of the race. Ed however hadn’t worn enough
layers or heavy layers, so he was chilly. Luckily he wore the Dunkin’ Donuts hat they
were giving out in the start village. Somewhere around mile 21 there was a medical tent
handing out mylar sheets. They really made a difference.

The last 2 miles I was tightening up, probably because of the cold. At one point I just sat
for a minute.  Ed later said he was concerned I was debating whether to continue or not.
I assured him that was never an issue. I didn’t care about my finish time. I just cared about the finish line. I just needed to sit for a minute.

I think my fueling was pretty good for the first 2/3 of the race. The last 6 miles or so I had to push myself to have some chews and to drink some tailwind. I thought about one of the daily inspirations I hadn’t posted yet that says, “Ask yourself, ‘Can I give more?’ The answer is usually ‘Yes.’” – Paul Tergat. I had no doubt about crossing the finish line. My doubts were about getting from the finish line back to the hotel.

                                                                                                As we were walking along Central Park South about ¾ of a mile from the finish line, I
                                                                          heard my name.   It was a friend from high school, Jennifer. We lived on the same
                                                                          street. Her house had MTV when we were growing up and I remember being over there
                                                                          for hours watching and practicing Michael Jackson’s Thriller.

                                                                          Even though I’d made it into the marathon through the lottery, I signed up to fundraise
                                                                          with  National Organization for Rare Disorders, Inc. (NORD) s Running for Rare team.
                                                                          They had been cheering at mile 23, but by the time Ed and I got there the cheering
                                                                          section was long gone. One of the organizers, Jamie, did catch up with up us shortly
                                                                          before we turned back into the park. Rebecca from  Women of  the Mountain  joined us
                                                                          too. So we had quite the entourage as we made it into the park and toward the finish

                                                                          Ed participated as my guide. As such, the rules stipulated there could be no prolonged
                                                                          touching and that he had to let me cross the finish line first. He got a medal, but he
                                                                          doesn’t get an official finish time. He is OK with no finish time because he did my race,
                                                                          not his own.

We crossed the finish line hand in hand.

My finish time was 9:50:46. I was 53,512 out of 53,518 finishers. My per mile pace was 22:32, but that includes about 30 minutes of battery related time. I am ecstatic about finishing. People have asked if I’ll do another marathon. Absolutely. I’ll most likely wait until after my double lung transplant though. Training just took too much time and entire Sundays. I’ll be sticking to half marathons and shorter for now.

As for getting back to the hotel, it wasn’t too far from the finish line, but I did not want to walk any further than necessary. We headed toward the athletes with disabilities tent and ran into a friend from Canada, Lynn, who had come down to cheer us on. When we got to the tent my checked bag had been taken down to the finish line. I sat down and waited for them to go get the bag and bring it back. After probably 20 minutes or so, we finally continued up past the police barriers. There were those bicycle taxis right there so we hoped in one and were at our hotel in no time and without an extra half mile of walking with several bags.
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