NYC with a Disability

Hello and welcome back! Do you love to travel? I think it’s fun to go and see new places and see how other parts of the world live. I enjoy traveling, but as my disease progresses I find it harder and less appealing to get away. Part of my anxiety stems from all of the unknowns. If you don’t live with a disability, chances are these things never cross your mind. 

Pizza in NYC is a must!

If traveling with my wheelchair or scooter, which I almost always do now, I have to think about and prepare for if the room I get will be big enough for my family plus the scooter. Is there a walk in shower, are the beds too high to get into, is the city I am traveling to accessible? These are things you can’t always count on. Even in “accessible” rooms walk in showers are not standard which makes no sense to me. I have a very hard time stepping over a tub to get in the shower.

If you read my previous blog you know that I recently visited New York City for the marathon.  If you’ve ever visited NYC you know the hotel rooms there aren’t known for being large. This time we also had the duo bike to house, so it was a lot! After much searching and a couple of cancellations, we finally secured a hotel room that looked to be larger than the average room in NYC. It definitely did not disappoint! Set up more like an apartment, the room was spacious and even had a separate bedroom, and not one but two bathrooms with walk in showers. It was perfect. The room also had a large terrace which is unusual for NYC too. However, the terrace was not accessible, so to get out to it I needed help. It’s a very frustrating feeling when you want to do something, but you physically can’t do it on your own. You are at the mercy of others. For me that sparks feelings of anger, guilt for inconveniencing others and sadness. 

Enjoying the terrace view!

Speaking of sadness, I had a very sobering moment while there. We were talking to the boys as we were walking down the street, each of my boys taking turns pushing me in my manual wheelchair because that’s what I had to bring on this trip. We were telling them how we had visited NYC on our first wedding anniversary. I said, “believe it or not, the first time I came here I walked the entire time all over the city.” I didn’t even own a wheelchair then. As I was saying that out loud I was overcome with this overwhelming sense of just….deep sadness. Muscular Dystrophy sneakily and slowly robs me of things like that. Now, I look back and think, how did I ever do that? As much as I exercise, do the stem cell treatments and take care of my body, it’s still not enough. It definitely helps, but it’s not enough. My muscles continue to grow weaker despite my best efforts. It breaks my heart not only for me, but for my family. 

I have the BEST chauffeurs!

Dodging crowds and dealing with the rudeness of people who don’t acknowledge disabilities is all part of a visit to NYC. The entire time I kept thinking, thank goodness I have my family to push me because there are so many curbs that don’t have cut outs, or even if they do people block them, or they have a little lip on them so one has to pop the wheels up and over to get on the sidewalk. It’s astonishing really how hard it is to get around there even today. My boys have learned over the years the same thing I have. That not everyone is kind or respectful of those with disabilities. They see the looks of annoyance and disgust just as I do. It’s upsetting to them. This time they voiced their feelings several times. They feel that feeling of being invisible because others are too selfish to acknowledge someone with a disability. They cut us off, fail to hold a door, roll their eyes because we are in their way. 

Sightseeing

While we were there I found myself daydreaming about what it would be like if I just said to my family, “I’ll be back in an hour”, and I was able to take a walk by myself through Central Park, or stroll through some shops and grab a coffee on my own. There was a time that would have been my reality, and I’m lucky to have had those days. I can still have those days in a familiar place where I know I can get around closer to home, so I am grateful for that. I always feel like I’m holding them back when I’m on a trip with them. I feel like I create added work and stress to the situation. It does just take more planning and preparation when traveling with a disability. Not to mention the things you realize aren’t accessible once you get there. I always die a little inside when I hold a group back from doing something because I can’t. I always beg them to go ahead without me. The guilt can be overwhelming. 

Jack navigating NYC with the duo bike, not easy!

It is hard though. Hard when you know you are under the clock of this disease. Tik tok, no time to waste because it’s coming for me. It’s here. It shows no mercy. I will humbly and courageously continue to fight this battle and enjoy my life as it is. Traveling is just one obstacle in my way. Appreciate your abilities. Stop and think about the ease in which you are able to do even the little things. I know I do each and every day. I have so much to be grateful for, and am still able to do so much independently. I am working on dealing with the anxiety of traveling. I want to continue to travel, but I feel less and less comfortable traveling if my husband isn’t with me. 

All in all we had a very special time in NYC. It was definitely a trip that will go down as one of our best family trips. I’m proud of my family and all the effort they were willing to commit to make this trip a special and enjoyable one for me. A very selfless gesture, especially for two teenage boys. I’m so proud to be their mom. 💚