Treasures

I attended a Disability and Youth Ministry conference last week. My colleague, Erin Raffety was one of the keynote speakers and my sister, Kristin was on the practitioner panel. I hadn’t put a lot of thought into my attendance personally. I was there primarily to support Erin and Kristin and to learn about the things they treasured. But I was in for a surprise…
In the opening worship service, four people shared testimonies about how the church has influenced, aided and sometimes hurt them as it relates to their varying abilities.

Enter JJ.

JJ wheeled up to the podium. Before he spoke a word, I began to cry. I tried my very best to hold my tears to a minimum, squeezing them between my heart and my jaw. My face was tense as I fought to maintain control of myself. What was happening? Apparently, I had forgotten that I lived with and loved someone who rolled through life with a wheelchair.
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Pete and Julia rolling along.

It’s not that I had cognitively forgotten that Pete used a wheelchair for his mobility, it’s that since his death I haven’t been thinking of his disability. When I think of Pete, or when I grieve Pete’s death, I mostly focus on the loss of my closest, dearest friend. I miss his partnership. I miss his touch. I miss having him to come home to at the end of the day. I miss his jokes – well, most of them.

But I don’t miss his wheelchair – or the symptoms that came with Secondary Progressive Multiple Sclerosis. I don’t miss his fatigue. I don’t miss him not being able to transfer from his wheelchair to another chair so that we could sit side by side. I don’t miss him not being able to dance with me.

Truthfully, since his death, those things don’t describe Pete anymore. For the first several months after his death, I have had “encounters” with him. I have felt his presence walk into a room. In these encounters, he stands just over 6 foot tall. He has held me, danced with me and walked beside me.

Pete at our rehearsal dinner, laughing and making people laugh.

So back to JJ. He shared this experience of his journey through life with a wheelchair.

He grew up in a church that did not have an elevator and people used to carry him up the steps so that he could get to the sanctuary. This all seemed just par for the course for him. It’s how they did things. He didn’t go into how uncomfortable it was – although I imagine it was. He didn’t talk about feeling left out – although if no one was around to help him up the steps, he was literally left out. Instead, he said told a story that over time, the congregation began to age. And the pastor called for a capital campaign to raise money to build an elevator. And here was the reason: our members are too old to carry the caskets of our members up the steps to the sanctuary.
The church felt it more important to have an elevator for dead people than they did for JJ.
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A damn broke in my mind and I was flooded with memories of Pete’s limited mobility. I remembered trying to figure out where we could go to dinner based on whether they had stairs. I saw us sitting at home, watching endless hours of television because he was too fatigued to go out. And I remembered hours of worry as I monitored his symptoms and questioned what was happening to him. 

Pete with Lucia, Erin's daughter.

I had forgotten that living with disability is something that still very much lives inside of me. The needs and concerns of those who are differently abled matter a great deal to me. Their stories remind me of worry, anger, shame, guilt, sadness. And they also provoke in me resilience and contentment, joy and relationship.

Being married to someone with a progressive, debilitating disease forever changed me. I learned compassion and mercy in ways I would never have. I learned to advocate for people who are different than me. I learned to let go of thinking we are in control. I learned to be more welcoming, not just of others but even of myself. Mostly I learned to be aware.

Aware that life is fragile and therefore precious. I miss how living with someone who wheels through life made me aware of others differently abled people. Awareness is a treasure all by itself.
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I thought I was going to the conference to learn about the things Erin and Kristin treasured. Instead I was reminded of what I treasure.