Thursday, March 15, 2018

The Disabled Bride

Though I have lived with this body of mine for 28 years, I'm still learning how to listen to it. Disability affects every part of my life. As I've learned rather suddenly, this includes even my thoughts and actions as a bride-to-be. When David and I got engaged in November, with a wedding planned for the spring, I was genuinely concerned with how the stress of planning a wedding would compound my chronic pain and fatigue, especially knowing that Michigan winters and professional stressors make the effects of my spastic Cerebral Palsy much more pronounced in my daily living during these cold months. However, I knew that a short engagement was a non-negotiable for us. We knew that God was calling us into marriage, and we wanted to honor that call as soon as possible.

I sought advice from other professionals in my field. I talked with my doctors about my health concerns.. I talked with my future husband. How could  we all work together so that I could maintain my professional sanity, my personal health, and my commitment to planning this event?  I seriously considered forgoing the whole event, and instead, thought of marrying David in an intimate ceremony with only our siblings, parents and grandparents in attendance. There were a lot of reasons for this consideration, but my concerns for my physical stamina to get through this season were prominent.  Maybe other people could do the big wedding, I thought. But maybe those people aren’t battling their bodies on a daily basis. We have reasonable accommodations in the workplace; can we think about extending those to societal events and expectations?  

I recalled, rather grimly, how on my brother Joshua’s wedding day, my other brother, Christopher, had to carry me to the van after we had our pictures taken because my muscles locked up in the early November chill, and I couldn’t move my legs. Thanks to some pretty strong muscle relaxants and Advil, I was able to celebrate and dance that night, but those moments of pain still punctuate my memory of an otherwise joyous day.  I was afraid that on my own wedding day, with nerves and excitement at an all-time high, and everyone watching my every move, my body would just be like, “Um, yeah, I’m not gonna function anymore today, ‘cause this pressure is too much. BYYYE!” and I would be in visible pain, and everyone would be sad and blah blah blah.

David and I decided to go the route of traditional wedding – the people, the cake, the dancing and the whole bit – so I decided to change my mindset. I decided that the wedding itself was periphery to the actual thing I wanted. A marriage. So, I told myself, I wasn’t going to care about being a bride, when really all I wanted was to be David’s wife.

With that shift in focus, I decided that wedding planning would not alter my life in any way. It would be the thing that I could use to fill my time, when I had time. Like a hobby or something. I did not want to compromise my work goals, or my social engagements, or my physical health. It would be great! I would be an example for all women who felt that they had to cave to these cultural norms and pressures of planning a really expensive party, AND I would be an advocate for disabled brides everywhere! “Your body doesn’t need this stress of planning a big wedding, ladies! Don’t even think about it!”


For the most part, I have been really mindful of my self-care. The days that I have taken away from work have been primarily due to my spastic Cerebral Palsy, and have had very little to do with actual wedding planning, which makes me happy.  However, I think that weddings bring a whole lotta stress, no matter who you are, so my body has been reacting to that in full force these last few weeks. It’s been fatiguing  in the worst ways.

This blog post, for example, began as an idea I had on Monday night, when I was awake until two in the morning, battling insomnia, a killer migraine and fully body spasms, all while simultaneously bursting into lists of things I hadn’t accomplished yet or even thought about for our wedding day. As I shoved my face into the pillow and hit snooze a million times on Tuesday morning, for the first time in this whole process, I regretted my decision to just keep charging ahead as if nothing monumental was happening. As if I didn’t have physical limitations.

I wish I would have been better about listening to the needs of my body. I wish I would have taken the time off; not because I’m a bride, but because I am a woman with a physical disability that demands that I carefully steward my time and energy.

I know that my wedding day might look a little different behind the scenes. I already made the emotionally painful decision to not wear high heels on my wedding day. No matter how pretty and feminine I feel in them, I know that they are the first class ticket to immediate spasticity and immobility.  I’m prepared to bring my support cane, or a walker to rest as much as possible. I’m prepared to advocate for my needs, as they arise, even if it seems a little unconventional.  We might just take a lot of sitting pictures. Or fewer pictures. I don’t know. I’ll know as the need arises. I might have to sit during part of the ceremony. That’s fine.

 This is a learning process, living with a disability, and I am fortunate to have the friends and family to support me through it. Whatever happens, in 9 days, I will marry the love of my life, my partner in all things, and my biggest encourager and supporter. And I am overjoyed.

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