An SCDS-Friendly Wedding

The following blog post was originally written September 2014.

Many people set out to have a family-friendly wedding, or a themed wedding, but not too many actually try to plan a SCDS-friendly wedding. When my husband and I got engaged I did not have SCDS symptoms, and so we began to plan an evening wedding complete with dancing, drinking and mood-lighting. After I was diagnosed with SCDS and underwent my cranial surgery, I realized that a party style wedding was nowhere in my future, and in fact, I would be happy to make it down the aisle without donning a matching cane to go with my dress.

And so I used my event planning background in addition to all the things I learned about living with a vestibular disease to come up with a recipe for a SCDS-friendly wedding. Here are some important elements. I doubt my SCDS readers are planning a wedding themselves, but living with a vestibular disease often requires some thinking outside the box in a variety of settings, and it’s always good to have a game-plan when entering into what I call “vestibularly hostile environments” (VHEs for short).

Plan the excitement early in the day. Like most people with SCDS, my brain is constantly trying to process mixed sensory messages such as shaking vision, the feeling of falling, brain fog, and various internal noises from morning to night. I have found that if I get enough sleep, morning is the best time to take on challenging situations such as crowded rooms, loud music and lots of talking. (Note: just talking can be a cerebral challenge because many of us have autophony and our voices are louder because we hear the speech from the inside hole in the semi-circular canal. This loud sound often leads to dizziness for SCDSers who have the Tullios symptom). For this reason, the wedding was at a peaceful and quiet 11:00 am rather than a louder and more festive 8:00 pm.

Spend time outdoors. I don’t know the science on this one, but outdoor gatherings are easier than indoor ones for me. The worst possible scenario is spending multiple hours in the middle of an enclosed room with lots of background noise and loud talking. Instead I opted for having part of our festivities outdoors (yes, I know — Seattle rain. Best not to bring it up!) and for the portion of the wedding that was indoors I was seated close to the doors.

Avoid dancing. This one makes me just laugh to write because it’s so obvious. I used to love to dance. Could I maybe have pulled it off? Who knows. But toppling over mid-wedding isn’t a lovely bridal look so I skipped it. Besides, music involves loud music (see Tullios symptom above).

Skip the Alcohol. This seems to be an agreed thing among those I meet with SCDS, but our brains can’t really handle alcohol as well as they used to. It may be that so much of our brain-power is being used on vestibular functioning, that it doesn’t tolerate being more clouded. It seems that just a half of a drink will either make me feel like I have had 3 drinks, or give me a migraine, or both.

Keep it small and simple. Small crowds lead to less noise and smaller weddings lead to less planning and therefore less stress. Stress (and noise) are two things that seem to exacerbate SCDS and make symptoms worse for me, so the more those things could be minimized, the better I felt. Of course minimizing stress is nearly impossible during a major life event, and truth be told I felt dizzier in the two weeks leading up to the wedding than I had before, but it could have been more of a challenge.

So that’s my recipe for a SCDS friendly wedding. Despite all those precautions I still ended the day with a migraine, had several moments when I felt like I was on a boat, and yes, I was dizzy when I walked down the aisle. Did my guests notice? Probably not. But like many other instances with this condition, I was amazingly thankful I was able to pull off the event – a wedding that had been canceled and re-planned multiple times. Oh yeah, and instead of gifts my husband and I opted to ask for donations to the Vestibular Disorders Organization – an online resource that offered tips on coping and living with vestibular conditions. We considered it our small but well-meaning effort to give back to a website that helps people get through this condition.

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