Saying goodbyes, but carefully

My CAD makes keeping up with others here in Papua a matter of strategy

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by Mary Lott |

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“Mike,” I asked my husband, “how many kids are in this class?”

I fidgeted impatiently while the movie droned relentlessly on screen. It was all about an eighth grade student’s life from birth until this celebration at the end of this school year. Next year, the student would be a high schooler. This event provided closure for some who wouldn’t be returning to Hillcrest School in Sentani, our home in Papua, New Guinea, in Indonesia.

Despite my impatience, ceremonies like this one are important. It’s important to celebrate the ending of a process and mark the beginning of a new venture. Still, I had to be careful when interacting with the students. My cold agglutinin disease (CAD) makes me wary.

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Careful with crowds

I have to be cautious around other people. The long-term ramifications of catching a so-called minor cold can prohibit my participation in a highly anticipated event down the road. CAD is an autoimmune hemolytic anemia, where red blood cells are destroyed when exposed to cold temperatures. Thus, the best preventive treatment is for CADdies, as those of us with CAD call ourselves, to stay warm. We also need to avoid infections and fevers.

I learned in December, by listening to a webinar presented by the Cold Agglutinin Disease Foundation, that fevers trigger the complement system. Our red blood cells break down, and we experience fatigue, general malaise, dizziness, aches and pains, and sometimes even heart problems. I spend a lot of time resting, often a month or more. Other times, my doctor has prescribed infusions with rituximab (known by the brand names Rituxan and MabThera) and once a blood transfusion.

But I don’t want to be excluded from others’ celebrations. There are ways to be a part of people’s lives without having to meet in groups.

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I opt for face-to-face involvement. I’ll meet people individually. If someone has the sniffles, I explain that I cannot get too close and distance myself. Most people are understanding. By listening and conversing this way, others know they’re still important to me while I’m able to keep up with their lives.

I also text people. I ask specific questions about subjects I know they care about. Even if my text just says something like, “I’m thinking about you today. I’m praying for you,” that little bit of concern keeps me involved.

Finally, I sometimes send a card or small gift, nothing expensive, via my husband. Although I’m not seen often in the community, people know that I’m still here and they’re important to me.

Leave takings are hard, even in the best of circumstances. Here in Papua, people come in and out, do a certain job, and then leave. Humans mark these transitions with closing activities such as a dinner, reception, or gala activity. I have to pace myself, choosing to attend one and skip another.

Special circumstances

This weekend is the Junior-Senior Banquet, where those students who have become so close through shared joys and challenges say goodbye, perhaps for the rest of their lives. We aren’t going.

Mike and I have been invited to a dinner a week later, given by the parents of one of the seniors. It’ll be held in an open-air restaurant next to Jayapura Harbor. I’ll attend that dinner with gladness. I’m hoping the open-air situation will provide the distance and safety I need.

The attendees are from my favorite and last sixth grade class, which is graduating high school at the end of May. While I don’t go to many things, I’ll celebrate these special students. When I had my health crisis in May of 2018, they’re the ones who wept and prayed for me. The concern they showed was palpable. They formed a queue to hug me and kiss me when I left the classroom.

Today, these students are wonderful young men and women with the future bright before them. They still share special moments in their lives with me. I’ll share this special, final, goodbye moment with them.

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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