Growing old is challenging for a CAD patient and her motorcycle

We both require regular 'maintenance' to keep us running smoothly

by Mary Lott | June 10, 2024

“Mom! Can I ride your motorcycle around the backyard?”

The backyard was fenced. That was important, as there was a steep drop-off to the valley below just beyond. There were few obstacles, so she could mostly go straight but would also be able to practice turning and navigating difficult terrain. These thoughts went through my mind as my 14-year-old baby got on my bike.

She started it well enough, then gave it a little gas. Lurch! Crash! For about 5 feet, she did OK. Then it was over.

“I thought you said your dad taught you how to ride?” I wasn’t actually angry, but I wasn’t happy, either. My baby scrambled up off the turf and pulled my vehicle into an upright position. “Push that bike into the garage and come in and explain yourself.” I was sure it would be a good tale.

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A long history together

That motorcycle and I have grown old together. I was a “youngish” 45-year-old and the bike was probably five years old — an equivalent age in motorcycle years — when I acquired it. In those years, most people here in Papua, Indonesia, used motorcycles. I found my RattleTrap, as my kids named it, very agile at dodging potholes, bumps, and pedestrians.

But as it aged, RattleTrap developed a few difficulties. I’ve developed a few difficulties, too. I have cold agglutinin disease (CAD).

CAD is an autoimmune hemolytic anemia that manifests when red blood cells are exposed to cold temperatures, causing them to clump together and then dissolve. This can result in fatigue, various aches and pains, brain fog, and even heart problems.

RattleTrap leaks oil. It creaks and groans when going over bumps, through mud puddles, and across potholes. Growing old hasn’t been smooth for either of us.

Adventures

As I look back over the years, I think of all the things I’ve done with RattleTrap. I used it once to take an injured student to the hospital.

We went down bumpy hills, dodging people and dogs. We zipped around the curves at the edge of Sentani Lake and met the boy’s dad at his office, where he was waiting to finish the journey in their car. It turned out a bone had indeed been broken in his hand. A cast was applied, and everything turned out well.

When I travel to the U.S. for my Rituxan (rituximab) infusions, I need to ask others to drive me to the hospital. During my first treatments, when my husband wasn’t able to travel with me, I hired a car to take me there.

A man's hands fasten a zip tie onto the frame of an old motorcycle to help hold it together.

Mary Lott’s husband, Mike, puts new zip ties on “RattleTrap,” the name for her motorcycle, to help hold the body together. (Photo by Mary Lott)

RattleTrap has reached the age where it needs help and attention. It just can’t do what it did before. Today, I don’t allow anyone to ride with me, as my bike isn’t strong enough anymore.

It needs a lot of adjustment. In a few places, I use zip ties to hold the frame together. The paint is bubbling, and the chassis is no longer as flashy as it was. Further, I would never allow a teen to learn to drive a motorcycle using RattleTrap.

I, too, have reached an age where I need help and attention. I once taught at our local high school, but retired when I was diagnosed with CAD. I am no longer strong enough to hike or swim for miles as I once did. I have to go to my own “mechanics” for evaluations and treatments.

Into the future

Our school’s graduation was held last week, with a reception following the ceremony. I got on my motorcycle and started down the road to Main Street. For the second time in three weeks, I felt the thud, thud, thud of a flat tire. Ugh! Another setback. I took RattleTrap into the repair shop, and after a quick substitution, I was on my way. I hope my next doctor checkup goes as smoothly.

RattleTrap, with the proper care and gentle treatment, will continue in use for many years. At present, I’m packing my bags to travel around the world and see my medical team. I expect I’ll receive proper care and gentle treatment. That way, I, too, will continue for many years.

Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.

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About the Author

Mary Lott is a southern girl from Auburn, AL, living in Sentani, Papua, Indonesia, where she and her husband have worked for almost 30 years. She has taught sixth grade to missionary kids. Now, she designs websites, gardens, SCUBA dives as often as possible, and uses a motorcycle as her primary mode of transport. Their three kids have grown, but this gap is filled by two Papuan boys from one of the island’s interior villages. Mary is a surrogate “mom” while the boys attend a private school in town. Since her diagnosis at age 63, Mary juggles life and living at her home, “Ivy Manor East.”

Growing old is challenging for a CAD patient and her motorcycle