Sometimes, We Need to Remember to Forget

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Managing EDS bladder issues

I wrote last week’s column about Wunder-duck early, as my brother was getting married and I knew the occasion would be semi-chaotic.

And so it was, but it was wonderfully semi-chaotic. I got to spend five days visiting with family from all over the country and friends from all over the world. I had adventures like “stealing” my cousin’s car for the day (thanks, Jenni!) when a pants emergency required me to find a tailor who could make same-day alterations for one of the groomsmen, who had measured wrong.

To give everyone a clearer picture of the fun, my extended family is quite large; my dad is one of six children, and each of his siblings is married and has children. We grandchildren range in age from 14 to 35 (my brother is the oldest). While many of my cousins live in the greater Boston area, some also live in California, Colorado, Virginia (me), Washington state, and Hong Kong.

My brother and his bride live in Hong Kong, and her family is from China. This was their first trip to the United States. My parents and I live about 45 minutes apart in Virginia, and the wedding was in Massachusetts. Dual-continent, dual-language, and tri-state coordination was a challenge for sure, but everyone pitched in to help.

By the time we arrived at my grandparents’ house the week before the wedding, so much was already done. One of my aunts had put together baskets for the restrooms at the reception; another had done a bunch of baking (this recipe is similar to one of our favorites) and put it in the freezer; and one of my uncles had cleaned the pool and had the backyard ready for all sorts of fun. The wedding would be at a church and the reception in a local ballroom, but people would be coming and going from my grandparents’ house all week, as it serves as a home base of sorts anytime the family gets together.

The day of the wedding turned out to be exceptionally hot — 97 degrees — and as is common with older buildings in the Northeast, the church didn’t have air conditioning. Despite the sweltering temperatures, everyone came out and no one complained. There were huge fans running, and each guest was given a Chinese fan that was both for comfort and a souvenir from the wedding. The reception, thankfully, was in a modern, air-conditioned building.

In China, there’s a tradition that the groom and his friends have to come and win the bride from her family by completing a series of tests, or door games. My brother and his wife created some modified games that we played at the beginning of the reception. It resulted in lots of laughter, goofiness, and fun that crossed language and any other barriers. The reception was a blast, with guests from around the world coming together to enjoy and celebrate family.

At this point in the column, you may well be asking yourself, “What does this have to do with EDS?” Well, absolutely nothing, and that’s kind of the point. As individuals with rare disorders, we spend so much of our time focused — whether consciously or subconsciously — on managing our issues that it can be hard to realize that sometimes we need to forget about them and just be. This past week was an amazing time of fun and laughter, of meeting new friends and reconnecting with old ones. EDS got to be in the background, and that was the icing on the cake of an already wonderful time.


Note: Ehlers-Danlos 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 Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.


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