Home for the Holidays

A four-day weekend, long-distance travel, large family gatherings, and too much food. After a season of solitude, many Americans celebrated Thanksgiving again this year.

My husband was not raised with the holiday, having grown up in Northern Ireland. He was a subject of the crown rather than a cultural descendant of pilgrims. But for many immigrants, Thanksgiving is an easy holiday to embrace. It incorporates many of the qualities that entice foreigners to move here. We have the freedom to travel and assemble, to offer prayers of gratitude in any religion. And we have pie.

You can’t go home again

Although card companies and coffee commercials focus on the joy and sentimentality of Thanksgiving, there is a poignant side. This is the stuff of great novels, comedic movies, and sad songs. Landscapes change, relatives age, relationships end, and grudges never do.

Returning home, we find old haunts and shortcuts have disappeared to make way for new roads and developments. Parents move a little slower, grandparents have passed on, and some in-laws have moved out.

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As usual, my husband and I reflected this year on the inability to emotionally return to the homes of our memories. But we have also begun to seriously contemplate the fact that he may never be able to physically go home again.

Ronald’s diagnosis of atypical hemolytic uremic syndrome (aHUS) means that we have to anticipate fatigue, avoid triggers like food poisoning, and stay close to medical care. That’s all quite manageable in the environment and routine we have established in a small town in Virginia. But international travel presents major challenges to all his needs.

Travel, food, and health

The landscape of Northern Ireland bears some resemblance to our Shenandoah Valley. The locations, however, feel worlds apart. There are a few hours of highway from our house to the airport, where a couple of hours are spent walking and waiting. Then, it’s eight hours in the air, followed by another flight from London or a train ride from Dublin. Finally, a 45-minute car ride to a relative’s house or hotel leaves weary travelers with a five-hour jet lag and aches from the suitcases dragged all this distance.

The rural setting and extensive coastline of the country offer abundant and fresh food. Unfortunately, preservatives are in shorter supply, as I discovered in my mother-in-law’s refrigerator. Local dairy products are richly delicious, but have a short sell-by date and come with the ominous warning, “Consume within three days of opening.” Known more for their frugality than their culinary skills, the locals believe deep frying is the cure for old fish.

aHUS is a rare disease that needs to be monitored even when the patient is healthy, and there are only a couple of options for treatment if symptoms appear. When Ronald was diagnosed, he was one of fewer than 700 people with the illness in the U.S. There were none in Northern Ireland.

Change of plans

A trip to my husband’s homeland would take a lot more planning now than it used to. We would have to break the travel into phases, staying in hotels before and after the international flight to ensure his stamina for a reunion of the clan. Potluck dinners and the corner chip shop would have to be avoided; we would have to stick with freshly prepared or prepackaged foods. Most importantly, we would have to have contingency plans for blood monitoring and a possible drug infusion. And we would have to be sure that his insurance would cover it there.

Through the years, we’ve often been homeward bound for various holidays. Now, it seems, we may be homebound. We can celebrate anyway, just the two of us, with pie.

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Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.