Good >Bad?

Hello and welcome to another week at Humbly Courageous! I’m glad you are here. Life for all of us is full of ups and downs, disabled or not. The point of view that I speak from is that of a lifelong disabled woman, so it’s the only perspective I can speak from. However, throughout my life, things have looked different for me as I go through the changes that age brings coupled with my progressive disease. I’ve gone from walking 100% of the time, to now using various assistive devices as needed. For many non disabled and some disabled folks, it can be hard to grasp the concept of someone like me that uses a wheelchair sometimes and walks sometimes. Many think the only way one needs a wheelchair is when their legs can no longer hold them up, and that can of course be the case. But also, a reality for many disabled people, is that some days we can make it on our legs and some days we can’t. It can depend on a lot of different factors, such as, walking distance, terrain, crowd size and familiarity of a place, just to name a few.

The first time I visited New York City was the year 2000. My husband and I celebrated our first anniversary in the big apple and we fell in love with the city. Most notably, on that trip, I WALKED that city! I’m still in awe that I was able to do that with my neuromuscular disease. I was 26 years old. It certainly wasn’t easy, but I did it. A few days ago my husband and I visited the city for the fifth time to celebrate 24 years of marriage. As we reminisced about our past trips to the city, I couldn’t help but think how each time looked physically different for me. Each time, less ability to walk distances, with this most recent time, being full time in my wheelchair for our 3 days out and about in NYC. It did make me sad and was difficult for me to process. The bright and shining beacon of gratitude is that my husband is willing and able to push me all over the city. Even though I wasn’t walking, I could still see it with my eyes, hear it with my ears and smell it (sometimes not great haha). The only thing missing were my legs walking me through the city. New York certainly has a long way to go in accessibility. There were many times when we ran into roadblocks. If I was not able to stand and walk some, so we could get my wheelchair down some steps when there wasn’t an elevator, we would have had to turn back many times and find a new way. 

One particular day, we were checking out a trail called the High Line which is in the Chelsea area. It’s beautiful and it was very neat to experience. The trail is up above the roads so to get to it you either have to climb stairs or find one of the few elevators that can take you up to it. We easily found an elevator to take us up. The trail is a little over mile long and once we neared the end, the first elevator we came to was out of service. We were told there was another one at the very end of the trail, so we headed there only to find out that it was out of service too. So, unless we wanted to walk all the way back to the beginning, I would have to get out of the chair and climb down several flights of stairs. Luckily, for me that’s an option. Going up stairs, not so much. As we were discussing what we should do, a man came up and asked if we needed help. We explained to him our dilemma and he said to my husband, “ you help her and I will carry her chair down.” How kind! We decided, after some back and forth, to accept his generous offer. We finally made it to the bottom, and I was nearly in tears because of this man’s kindness carrying my wheelchair all the way down to the bottom. We both thanked him profusely for his help. Turns out, his brother is a double amputee and he himself is a stroke survivor. I believe he is an angel on earth, and it was no coincidence we had this encounter. Although a stranger, he felt so familiar to me. We took a picture together before saying goodbye. We offered to pay him for his help, which not surprisingly, he refused. We told him we would pay it forward and give the money to someone in need, which is what we did a few hours later. 

Our angel in the city 

There were, of course, many rude and inconsiderate people, which we always encounter when out in public with my wheelchair. People walk right in front of us or walk around us to stand in front of us on the accessible ramps to get onto the sidewalk. I wish everyone could at least experience what it’s like from the perspective of a wheelchair. I think many more people would have much more consideration and offer kindness. I was also met with many smiles throughout the day which was awesome. Many people stare, some are kind some not. It’s a lot to take in from where I sit. I think the good stares far outweigh the ugly and unkind expressions I’m often met with. 

We had a wonderful time meeting up with Leah, who is MDA’s other National Ambassador, and her amazing family. Her dad also lives with MD, so being with them again was certainly a trip highlight. Laughter and love are so good for the soul. Connection with others who completely understand is the soul boost we all needed. Blessed to have them in our lives!

The best memories were made 💚

A beautiful bond 

On our last day there, we were pressed for time before meeting our ride to the airport, which was graciously Leah and her dad! I was picking up a gift to give Leah for her birthday, and I told Jamie to just park me in my wheelchair outside of the busy store, so he could quickly grab the gift we had ordered. I was sitting to the side with lots of people walking by me and looking at me. It takes humble courage to sit somewhere where many are staring and judging. I was holding a gift bag that said “happy birthday” with some flowers sticking out of it. Two older women approached, and as they walked by one of them said, “oh wow she’s even holding a happy birthday bag, maybe she thinks that will get her more money.” I’m not generally a vengeful person, but if I could have gotten out of my wheelchair and chased them down I would have. What in the world?? I had to collect myself and choose not to let that comment ruin what little time was left of our amazing trip. I thought of the man that helped us down the stairs and our time with Leah and her family. I decided I would focus on that kindness because yes, I do think that generally the good outweighs the bad.💚

My hero ❤️