Every year on Christmas Day I travel to visit my oldest daughter and her family. Planning travel for one is simple and I’m used to travelling for Christmas and other holidays by myself. The flights are routine, parking is simple, and I’m on auto pilot usually before 8 am to catch an early flight. But this holiday travel experience was one I’ll never forget. The gifts this holiday season brings aren't tangible. The gifts are humility, grace and feeling grateful.
Boarding the first of my return flights from Huntsville to Dallas is non-eventful. Scanning the rows for my reserved seat. I noticed a woman sitting in the aisle seat. My routine includes selecting a window seat as I like to doze or read a book. As I waited in the aisle of the row of my my window seat, I announced that my seat was the window seat. She didn't respond. I announced it again thinking maybe she didn't hear me. Nothing. I then asked if she wanted my window seat and I would sit in the aisle seat. She turned her head back and forth signaling no. Finally, she attempted to move her things slowly as if giving me space to get to my seat. She was a small, frail looking woman with thin, gray hair braided behind her head and wearing a double mask over her mouth. Since there were no verbal cues and her eyes were not expressive, I took that as my directive. I told her that I would climb over her.
Climbing over her was easy as neither of us are large people. After I was situated, I noticed she gripped her cane firmly. A flight attendant came along and asked her to lay the cane flat on the floor. When the woman didn't comply, the flight attendant looked at me, saying the same thing with no offer of assistance. The woman looked at me and I helped her lay it flat. It seemed like the flight attendant thought we were travelling together. I never asked this woman her name since she was nonverbal, as communication was non-existent - never mind knowing her name. She had enough to deal with so I doubted she wanted to know my name. She resembled Jane Goodall; so let’s just call her Jane.
Jane had a cell phone in her hand but reached down to her bag and pulled out a small pad. She used the pad to write with her finger like an “etcha sketch” and erase it with a button afterward. Our eyes met and she wrote slowly, “I have non-verbal ALS.” Wow, I thought! Never have I ever met anyone with ALS, much less someone who is also non-verbal.
I nodded and we ceased “communicating.” Not knowing what else to say and not wanting to add any additional stress to her flight, I pulled out my AARP magazine to read. “Interesting reading choice,” I thought to myself.
About halfway through the flight, she wrote that she needed to go to the bathroom. Since she was seated when I boarded so I had no idea of her level of ability or how much she relied on her cane. As she tried to stand up, it became very clear that she was barely mobile as she could not get up out of her seat. The girl across the aisle saw us struggle and offered to help. I nodded and she reached out to grab the woman around her rib cage and lifted her to standing position while I steadied her from behind. After this exercise, I decided to follow her to make sure she got to the bathroom. I helped her periodically when she weaved toward the back of the plane. She made it to the bathroom without incident.
Having never helped anyone with this type of disability, I guessed that she might need assistance during the bathroom process and getting back to her seat. I told her I would close the door and stand outside, but we wouldn’t lock it. She nodded. After a few minutes, I knocked and noticed she needed assistance getting dressed. Mission accomplished. We headed back to our seats. She had more difficulty getting back, appearing even weaker, especially when we tried to pass the exit row seats as they were further apart.
“Man,” I thought. This is unbelievable that she’s able to travel alone in this condition. I wonder how her family let her travel this way. Maybe she didn't have any?
Asking for assistance from the gal across the aisle, I slipped into the seat to help her from behind and she helped lower her into her seat while I made sure she was in the right spot and buckled her up. “Where in the heck are the flight attendants?” I thought. It seemed that no one knew of her abilities, let alone disabilities. So many questions swirling in my head about people flying with disabilities, but no real assistance other than a wheelchair (I later learned) to get her to her flights and in her seat.
I asked her if she wanted anything to drink as the cart came by and she wrote, “water.” I watched her try to use a straw. SHE COULD NOT SUCK ON THE STRAW!! She tried to drink water from the cup and It spilled down the front of her and she couldn’t swallow. UNBELIEVABLE! I’m shocked at her level of disability at this point. Finally, I had the idea to use a straw as if giving fluid to a toddler. This worked, but I had to be careful to put it to the side of her mouth as she slowly moved her head backward so she wouldn’t choke. We managed to get half of a straw’s worth of water down her 4 times.
After we worked to get her some water with the straw, she stopped me and tried to cough. Yikes, I didn’t want to drown the poor thing. We stopped after using MANY napkins to dry the spilled water. She could barely cough and it was dangerous to give her any more water.
After a while she was sleepy and dozing, but she had the aisle seat. She motioned for me to move and switch seats with her. Once again, I climbed over her, using the seat in front for leverage. Thankfully, I’m very limber. She was finally able to get some rest with the window seat.
When we were ready to deplane, I told her I was very glad it was me sitting next to her and not a very large man. Her eyes told me she chuckled. She also wrote on her pad that she had son who works for the government in Madison, which happens to be the same city where my daughter works as a realtor for a builder selling new build homes. She and I had both just celebrated Christmas near each other. Her daughter is a nurse practitioner who lives in Surprise, Arizona. She must live with her daughter, I assumed. With that information, I realized we would be boarding the same connecting flight and I felt reassured she had someone on the other end to care for her, but no idea who she would be sitting with or if they would help her.
As I boarded this next connecting flight in Dallas, she was already seated. I patted her arm as I walked by telling her she beat me on the plane. She was already trying to recline her seat and we were still boarding.
Another disheartening revelation; her level of disability also includes cognitive function. I had already told her twice on the first flight that she couldn't recline the seat until after take off. Sadly, this makes me think she won’t be on the same flights next Christmas. As I write this from row 24, it is just sad. Seeing someone who is clearly in a state of decline with a terminal illness is heart wrenching.
And this flight will be landing well after midnight in Phoenix. Someone in her condition should not be travelling at this hour. It’s hard enough for the rest of us, much less someone with her illness. A part of me wanted to give her my business card to share with her daughter. I wanted to tell her daughter how hard this flight was for her to experience at every level. But thinking it over, I changed my mind and didn’t share my card or my name. Her daughter probably knows how hard this was for her as she’ll be meeting her at the airport and see first hand her condition with her medical experience. And she lives with her daughter. Maybe her family figured this might be her last Christmas travelling to visit her son in Alabama?
We all see people on the street or in public places with some form of disability, but we never really connect with them. Some of their disabilities are obvious and some aren’t. This connection had a profound effect on me. One I’ll never forget.
Sure, I’ve fed the homeless many times at Thanksgiving; rang the Salvation Army bell numerous times; but never have I ever helped someone with a non-verbal illness like ALS. Thinking of her son and daughter and watching her travel alone was a sad learning experience, but also an about face after just celebrating Christmas with my daughter's family. I’m glad to have helped her and the gift that she shared taught me a lot about appreciating my good health and the health of my family. Other benefits - grace, humility, and regard for the human condition.
This experience makes me also appreciate those that regularly care for and come across people like this in everyday situations. God bless them! The endless cycle of disease, research, caregiving and oftentimes eventual death is an every day experience for them.
Having walked to raise funds for ALS in the past a few times, this is a wake up call. But it was never personal until now. The feature photos was taken right before an ALS Walk. Could not resist taking a phots of those cute triplets supporting ALS.
If you’d like to learn more or donate to the ALS, check out their website. Thanks to the 2014 "Ice Bucket Challenge" an astounding $154 million was raised for reseach so far. Let's hope a cure can be found to help so many with this awful disease.
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