In 2017 51,307 people started the New York marathon. All but 541 people finished the marathon. I was amongst the starters and, unfortunately, I was amongst the 541. I have my reasons for not finishing, but to be honest, I still beat myself up about the race. I don’t really beat myself up for not finishing but for not trying to go one more mile.
I thought it would be enough to hold the image of myself with the medal around my neck. It wasn’t. I stopped at mile eighteen. The person from Achilles International, who joined me at the halfway point to help carry my portable oxygen concentrator battery, along with my husband, Ed, who had walked along the sidewalk with me since mile sixteen, stopped with me. As I looked ahead at the course, people were starting to take the barriers down and I knew this likely meant there wouldn’t be any more aid stations the next eight miles.
Eight miles. That’s how much further I had to go. It had taken me about seven hours to get to that point. I’d been a lot slower than I’d expected and I was slowing down more. I figured it would take three to four more hours to finish, and I couldn’t see myself having enough strength to go that much longer.
I held the image of me with the medal around my neck – the carrot I’d been using in training and so far in the race – but it had lost its appeal. I asked myself if I would be OK with not finishing the race. I told myself yes. What I didn’t ask myself was if I’d be OK with not pushing myself as far as I could go. The answer is I’m not.
Do I think I could have finished the race? Probably not. Do I think I could have gotten to mile nineteen? Yes I do. Do I think I could have gotten to mile twenty? I don’t know. I didn’t give myself the opportunity to find out.
For those that don’t know me – I have a rare lung disease called Primary Ciliary Dyskinesia (PCD). My lung capacity in 2017 was around 39%. I have to use supplemental oxygen when I race and that is through a portable oxygen concentrator (POC) that I carry in a backpack. With the double battery it weights six pounds. Since I had an extra battery most of the race I was carrying a total of eight pounds. I was also on IV antibiotics at the time of the race and had a peripherally inserted central catheter (PICC) line in my left arm.
On November 3rd I’ll be lining up for the New York marathon again. This time though I’ll have the benefit of my 2017 experience. I have a better idea how to tackle a marathon AND how to tackle my lungs.
One of the things I realized after the race is that I didn’t have any small goals after mile sixteen. There were a lot of smaller goals in the first half: 5K, 10K, halfway, and where Ed and the Running for Rare cheering squad were at mile sixteen. This time I’ll be planning smaller goals in the second half.
One of my mantras will be to do the mile I’m in. Looking at eight miles to go seemed insurmountable. One mile was doable.
I’ll also have the advantage of Ed being with me for the whole race. As a disabled athlete I can have a guide and this time that is Ed. He will be carrying my extra batteries. And that is batteries, plural. I had so underestimated my pace in 2017 that even if I had continued going I would have run out of batteries for my portable oxygen concentrator with maybe as much as four miles to go. Instead of only one extra double battery I’ll also have two single batteries, just in case. That means Ed will be carrying four pounds of batteries.
The other thing is this year I will do everything I can to be on IV antibiotics in September, so I’ll be off the antibiotics for the race. This may sound odd, planning for being on IV antibiotics. Every fall for around the last twenty years or so I have had to go on IV antibiotics for my lungs. What mostly did me in in 2017 was the IV antibiotics I was on had given me diarrhea and I was dehydrated and weak by the day of the race. I remember sitting under the tent waiting for the race to start thinking I might be in trouble if I had so little energy at that time. This year my plan is to have things lined up. To drop off the sputum sample at the beginning of September and to have the PICC line scheduled by mid-September. Part of the delay the past few years has been by the time I feel I need to start the IV there seems to be a two week delay to get the PICC line in.
Despite the lessons learned from 2017 and my plans to get me across the finish line this year, there are some things not in my favor. My lung capacity has dropped to 34%. While that doesn’t sound like too much from the 39%, I can feel the difference. I feel like this is probably the last year that I can do the marathon before having a lung transplant. I’m being evaluated to see if I’m a candidate for a double lung transplant now. I think I might have an answer as to whether I’m a candidate and when they think I should be listed by mid-July.
Some people ask why not wait until after the lung transplant to do the race? Because I don’t know what post-transplant will look like. While the probability is that everything will go well, and if my sister is any example after her surgery, I’ll be pretty much back to normal within six months. You never know though. One thing my sister talks about post-transplant is that her feet feel more tender. She has a hard time walking too far at once. Although this may just be her excuse to not do a race with me (just kidding). While things should be much better breathing wise post-transplant, it doesn’t mean I won’t have any more health issues.
If I can do a marathon now, then I want to do it now. Just because it might take me nine to ten hours is not a reason not to do it. Just because there’s a possibility that I could do it faster, later, is not a reason not to do it now.
The second best part of doing the NY marathon this year (doing it with Ed is the first) is that my sister and her family are going to NY to cheer me on and to sightsee. And let’s face it, as slow as I am, they’ll have lots of chances to cheer me on at several spots along the race course and sightsee in between.
All in all I feel like this is my year. I got into the marathon through the lottery. Less than 10% of the people who applied made it in that way. Ed is doing the race with me and my sister and her family will be cheering us on. Plus a local news station did a story about Ed and me.
I can’t wait for November 3rd. Although I know it will be here before I know it. This time I’m not only holding the image of the medal around my neck at the finish line, I’m also holding the image of crossing the finish line hand-in-hand with the man I love.