I’m Reclaiming My Epilepsy

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I’m reclaiming my Epilepsy. This matters a great deal to me.

Those two words might come as a surprise, I realize. Most people have never heard me place words like ‘my’ and ‘epilepsy’ together. From time to time, I’ll bring it up naturally in conversation, but most people don’t know I had epilepsy as a child. More significantly though, beyond the mere knowledge of it, most remain unaware of how deeply this impacted and shaped my life. So, while it’s fair to say that this hasn’t quite been a secret during my adult years, it hasn’t been in full view either. It’s very meaningful for me to bring it into full view now.

The pairing of words like ‘my’ and ‘epilepsy’ may be new to many. But I’ll share that this pairing is somewhat new to me also. I don’t mean to imply a new recognition that I had epilepsy. I had Childhood Absence Epilepsy throughout the duration of my elementary school years, first spotted by a teacher and diagnosed in kindergarten, then fading around sixth grade. This, I’ve known for a long while. What is new is the recognition that I’ve never felt so much affection in bringing these words together. The placement of ‘my’ in front of ‘epilepsy’ is an embrace of that epilepsy, and most of all, it is an embrace of a large, formative piece of my own identity. With those deeper feelings, I choose this more than I ever have before.

The truth is, for most of my life, I couldn’t bring myself to say words like these aloud. Apart from an embracing word like ‘my,’ I especially couldn’t utter words like ‘seizure’ or ‘epilepsy’ (or hear anyone else utter them) without an enormous, visceral feeling of shame instantly flooding my body. This persisted well beyond the years of actually having epilepsy.

If you know anyone well with epilepsy, either a child or an adult, you may be aware that this is a condition with a lot of stigma attached. This may be a remaining vestige of the history of epilepsy, misunderstood for thousands of years with an array of negative associations placed beside it. We are often afraid of what we cannot understand. Even today, people with epilepsy sometimes internalize this. And of course, along with this history of stigma, there can be a certain lack of dignity in feeling that you cannot fully control your body. I know that all of this affected me.

Much more though, I felt this intense level of shame around my epilepsy, because for the entire duration of having it, and many of the years that followed, I kept this entirely a secret. From both peers and adults.

My epilepsy was always present and yet simultaneously out of view. If you’re wondering how this could be possible, Childhood Absence Epilepsy involves many seizures daily that are short in duration — the older language of the 1980s was ‘petit mal seizures’ — and these can easily be mistaken for simple daydreaming. I know from my medical records (I requested those much later as an adult) that my seizures sometimes lasted as long as 30 seconds, but I assume many of them were also shorter. Every day, this experience was present, but also, out of view. Except… for those occasions when I would have a seizure around other people while I was in the middle doing something else. In these moments, I felt deeply embarrassed. Yet, even then, people didn’t recognize these as seizures. They were brief moments of pause — somewhat unexpected, and potentially out of the ordinary, but I don’t think people often connected the dots.

I told a few peers about my epilepsy when I was a senior in high school. But I didn’t really begin to share this as a narrative of personal experience until I was in my mid-20s. At first, that was a remarkably challenging, new thing to do, but it felt very freeing.

This has since become fully talk-about-able. Like I said above, over the years that have followed, I’ve found myself bringing this up in conversation from time to time. I don’t feel the same shame in uttering these words.

But something has additionally shifted over these last few months. During that time, I’ve had a number of different occasions to talk about this experience at much greater depth, and this has been a profoundly meaningful experience for me. At one point last semester, I met a student who also grew up with childhood epilepsy, and she wanted to hear my story. I meet with students all the time, and my full range of life experience impacts those conversations, but I have never sat down with a student specifically from this place as an identity.

This felt wonderful.

So I just started sharing this narrative more broadly and at greater depth and with even more intention, including among some of my most beloved people who only knew a sliver of this story. And I realized, this is the first time I’ve ever had a community around this experience. This means so much to me. I’m going to keep talking about this and expanding that community.

It’s been a long time since I’ve had epilepsy as a condition, but in these days, I reclaim it as an identity. There is empowerment in that choice. There is a great deal of healing in that choice. I see this not as the beginning of making peace with my experience, but rather, the culmination of having done that for years.

And I want to keep talking about this, primarily because I want to be the person who experienced this. I want to give from this part of myself, even as I know that I am being received so beautifully as myself.

This Saturday, I’m going to do something I’ve never done before. I’m going to participate in the Summer Stroll at the Detroit Zoo, a fundraiser for the Epilepsy Foundation of Michigan. I’m on N.J. Phillip’s team (a pleasure!) and I’m really looking forward to being there. Unfortunately, I can’t stay the whole time because I had already planned another event, but I hope to raise at least $100. First and foremost, I want to support this important organization, but also… I want to get the t-shirt. I think it’s about time I wear all of this a bit more on my sleeve. 🙂 #Har. If you want to help me out with this, please let me know.

Finally, this last weekend, without even purposefully looking for it, I just happened to stumble across the notebook where I wrote out my epilepsy experience as a narrative for the first time. I was 25 when I wrote it, and it was a pleasure to read this from my younger self. When I reached the end, I was struck by three sentences in particular, because I think they are wisely speaking right into this chapter. The same thing I wrote toward the beginning of my sharing is precisely what I feel as I expand my sharing:

“I thought for most of my years that my healing needed to be from epilepsy. No, what my healing has required is a healing toward epilepsy. I need to be allowed to be the person I was.”

Yes, Renee. With joy, let’s do that.

Renee Roederer

Socialization is a Ministry in and of Itself

coffee

Something I notice:

Some churches try to avoid having an internal self-understanding of being “just a social club.” In part, they push up against this because they’ve seen what can happen when church is “just a social club.”

I think it’s good and wise to avoid this tendency. Church communities can lose some of their distinct identity when they are gathered around their own social needs alone. When folks stop gathering around shared convictions and a larger sense of calling, it seems that justice, social concern, and relationships with neighbors are some of the first things to go. The church community begins to exist for itself.

So, some churches wisely try to avoid this. I agree with that wisdom.

But I want to swing the pendulum back, at least in one respect. Sometimes, when churches have new ideas about ministry, like new opportunities for relationship-building and action in their neighborhoods, I notice they become very nervous that these connections will become primarily social.

“What if we start a discussion group around this shared concern, but we never talk about faith?”

“What if people come to talk about their [sobriety/kids/caregiver role] but we never talk about Jesus?”

“What if people come for the [food/music/face painting] but we don’t see them again?”

or something that actually is self-serving,

“What if we hold this event for the community, but no one ever comes to our worship service? What if no one ever becomes a member?”

I think we’re forgetting that socialization and community-connections are ministries in and of themselves. I think one of the most meaningful and impactful things things a church community can do is provide avenues for connection and socialization.

Take, for instance, this crucial study, which reveals that Americans Are Lonely A Lot, and Young People Bear the Heaviest Burden.

Or this Ted Talk which discusses how deeply socialization impacts our health and longevity: The Secret To Living Longer Could Be Your Social Life.

Churches recognize that they can have ministries like food pantries, clothes closets, and soup kitchens without the requirement to enter faith conversations or later, join the church. They see a calling around these expressions of ministry and know that they meet vital needs in and of themselves. They don’t need to serve another purpose. But I don’t think churches have largely come to recognize how impactful they can be in providing opportunities for socialization. In the formation of relationships, there are so many opportunities for growth, health, and collective change.

Renee Roederer

Oh, and These are in the Bible

Bible

Yesterday, Attorney General Jeff Sessions had the audacity to justify the separation of vulnerable children from their parents at the southern border with words from Romans 13, a portion of an epistle in the Bible. That portion says,

Let every person be subject to the governing authorities; for there is no authority except from God, and those authorities that exist have been instituted by God. Therefore whoever resists authority resists what God has appointed, and those who resist will incur judgement.

Of course, just a few sentences later, the same passage says,

Love does no harm to a neighbor. Therefore love is the fulfillment of the law.

But since he referenced only the first part, I suppose Jeff Sessions means that parents and other caregivers should simply accept family separation because the government is doing it, and the government has determined they have committed a ‘crime.’ You know, the government instituted by God. (Sidenote: Remember when the same leaders held an ideology that government needed to be reigned in?) Likewise, I suppose he is implying that the rest of us shouldn’t question what is happening on the border. We should accept his God-given authority and his definition of ‘crime’ (among other things, it is not a crime to seek asylum).

This just in, Jeff Sessions: I do not accept your authority to traumatize children.

Likewise, when confronted during a briefing yesterday, Press Secretary Sarah Sanders justified these practices at the border, saying, “It’s very Biblical to enforce the law.” Which law? Whose? For what? For whom?

Because these words are also in the Bible,

Woe to those who make unjust laws,
    to those who issue oppressive decrees,
to deprive the poor of their rights
    and withhold justice from the oppressed of my people,
making widows their prey
    and robbing the fatherless.
What will you do on the day of reckoning,
    when disaster comes from afar?
To whom will you run for help?
    Where will you leave your riches? (Isaiah 10:1-3)

You shall not oppress a stranger, since you yourselves know the feelings of a stranger, for you also were strangers in the land of Egypt. (Exodus 23:9)

You shall not pervert the justice due an alien or an orphan, nor take a widow’s garment in pledge. (Deut. 24:17)

Thus says the LORD, “Do justice and righteousness, and deliver the one who has been robbed from the power of his oppressor Also do not mistreat or do violence to the stranger, the orphan, or the widow; and do not shed innocent blood in this place. (Jer. 22:3)

And so many more passages just like this.

Of course, this nation is not set up to be a theocracy. People have human rights apart from the words written in the Bible, and it’s clear that Border Patrol and ICE are inflicting severe trauma on the southern border. I don’t think it’s a stretch to call this emotional and developmental torture.

So we are angry and devastated, recognizing that those directly impacted are ravished with anger and devastation beyond words.

I will say this,

When I feel this way, I try to remind myself that people are really taking action, and we really can join that action. Otherwise, it’s easy to feel despair and assume nothing can be done. We can keep moving to pressure and protect.

We keep questioning. We keep speaking. We keep giving. We keep donating. We keep speaking the truth about human worth. We keep uplifting the needs of children. We keep looking at the problem. We keep caring for ourselves and others in sustainable ways. We keep fighting. We keep praying. We keep working in the direction of a better vision.

And perhaps we keep asking, what am I specifically called to do?

Renee Roederer

 

 

 

These Trees Blessed Me

 

I realize that the word ‘blessed’ is kind of hokey now. (Hashtag Blessed!) But that’s how I felt when these trees came into my view last week.

After landing at the airport in Los Angeles, Ian and I took the Gold Line to Pasadena. Pasadena is one of our former homes. We lived there for three years, and surprisingly — at least it felt that way to us — it’s approaching nearly three years since we’ve visited. I was grateful to return.

While on the train, Ian and I initially parted ways for just bit. He traveled one stop farther than me so he could go visit his former workplace. Meanwhile, I too was headed to a former workplace, Pasadena Presbyterian Church, but I took the scenic route.

Before heading our separate ways, Ian saw my reaction to these trees. Right before my stop, the train passed Del Mar Blvd. and I got a glimpse of this view. When I saw it, my hands just covered my mouth with a feeling of awe and gratitude.

Every year, these trees bloom for about three weeks in late May and early June. Folks in Pasadena could always count on me to geek out over the annual blooming of these trees. I loved them so much, in fact, that I used to say they were my Petronus Trees. They always felt magical to me.

I stepped off the train and began walking down Del Mar Blvd. with blooming, purple jacaranda trees on either side. This was a really sacred view for me, and with stories attached.

I suddenly felt such a feeling of home. But not one home: Two homes. Of course, these trees are my favorite scenic view of Pasadena, so that was an instant homecoming. But with a lot of depth and memory, they instantly brought me to Ann Arbor too, the home where I live now.

Five years ago, when these trees were blooming in late May and early June of 2013, I was in the midst of an unexpected and desired set of conversations that would invite us to move to Ann Arbor. These jacaranda trees were in bloom on the day I found out about the potential opportunity, and they continued to be in bloom throughout all of those initial conversations. Every single day, I would walk up and down this street accompanied by many purple flowers. As they fell on me and across my pathway, I would dream about what it would be like to move to Ann Arbor.

After all, we had hoped to move to this city for a long time. We had even taken many other walks in Pasadena and talked about that together. “How do we get to the Midwest in general, and if possible, Ann Arbor?” we would ask ourselves. And at the time, that was all about astronomy. But now, we could see opportunities for both of us.

For three weeks, amidst my favorite trees, I prayed and pondered the possibility of a new home. And I especially wondered if there were people I would come to know — people, whom later, I would have a hard time imagining not knowing. I wondered if there were students… friends… mentors… whole communities.

And, of course, there were. As I stood among the trees last week, I pondered particular students… friends.. mentors… whole communities. I felt so grateful to know them.

It’s been two and half years since I visited Pasadena, but I hadn’t seen these trees in bloom since the very weeks I was pondering all of these things five years ago. So I stood there while two homes came together — Pasadena with its trees and its many people I love, and Ann Arbor, filled with relationships of people who now have names.

I just gazed at the entire street, multiple city blocks of purple jacaranda trees. And I felt at home in so many directions.

Renee Roederer

Bob’s Stoles

Last week, I had the very lovely opportunity to visit Pasadena, California. Ian and I lived there from 2010-2013, and over those three years, we built a wonderful sense of community, particularly at Pasadena Presbyterian Church where I was a pastor. It was very meaningful to visit and connect with this community again.

We traveled to Pasadena last week in order to attend the memorial service of Bob Thomas. Bob was a wonderful friend and colleague who died at the beginning of May. He had been undergoing cancer treatments for about a year, but he had just turned a major corner, so news of his death still felt very unexpected. This was certainly a sad occasion, and yet, it felt so filling to be present. It was good gift to honor Bob.

Bob Thomas is a person who wore many hats. For many years, he was classical music critic and columnist for the Pasadena Star-News. Likewise, he was an avid chorister himself. For most of his working years, he was the communications aficionado of the Southern California Golf Association, known most influentially as the publisher and editor of FORE Magazine. A very committed, life-long Presbyterian, Bob served as an elder and an administrator at Pasadena Presbyterian Church; then later, after completing years of training, he became a Commissioned Ruling Elder. (For those who don’t speak formal Presbyterian terminology, that means he served as a pastoral leader).

On Sunday, we heard more about his life at his memorial service, a service designed by Bob himself with beautiful pairings of readings and choral anthems. I could write a whole other post about how wonderful that was.

After Bob’s memorial service, I greeted Nikki Thomas, Bob’s wife, and I was grateful to connect with her. After chatting a bit, she said, “I have something for you.” I wasn’t sure what it was. Maybe a card of some kind? She went to get it, and when she returned, she handed me two of Bob’s stoles.

“I want you to have these,” she said. I was so touched to receive this gift.

Bob and I both served on a team of people that created a new community in Pasadena around a Sunday evening worship service. Five years later, the Evening Worship Community is going strong and has grown in some incredible ways. Among the other gifts of traveling to Pasadena, I was grateful to be invited to speak to this community on Sunday night. Other people from that original team were there too, including my very good friend Adrian, who had flown down from Sacramento. We talk often, but we haven’t seen each other in about four years. This was a tremendous reunion.

In the midst of it, I asked if Adrian and I could celebrate communion together, something that happens weekly in this community. Everyone agreed that this would be meaningful. So when it was time to share in this meal together, Adrian and I walked over to the table. And as a first act to honor Bob, we each draped one of his stoles over the other. That was so special. Adrian led the prayers, and I had broke the bread and poured the cup for the community. I think Bob would have loved to see the two of us sharing all of this with the people. I think he would have loved to see his stoles worn at Pasadena Presbyterian Church again.

The New Testament word for ‘remember’ — including Jesus’ words, “Do this in remembrance of me” — has greater meaning than simply recalling a past event. It means, “to make present.”

I think we’re going to find ways to make Bob present for a long time. These stoles will be just one, present reminder.

Renee Roederer

 

Collaborative Leadership

Red arrow formed from pieces by people cooperating and working together

Every morning, I receive daily email meditations from Richard Rohr. I love them, and I recommend them to people all the time.

Yesterday, Richard Rohr sent a piece about collaborative leadership, juxtaposing it with the kind of leadership that dominates and determines decisions alone. He lifted up what is possible when leaders and entire communities begin to create cultures of collaboration. I like his list, so I’m going to share it today:

Here are some insights into what every good, servant-hearted, nondual leader knows and practices, whether in community, in the workplace, or in the classroom. Creative leaders:

  • are seers of alternatives.
  • move forward by influencing events and inspiring people more than by ordering or demanding.
  • know that every one-sided solution is doomed to failure. It is never a lasting solution but only a postponement of the problem.
  • learn to study, discern, and search together with others for solutions.
  • know that total dilemmas are very few. We create many dilemmas because we are internally stuck, attached, fearful, over-identified with our position, needy of winning the case, or unable to entertain even the partial truth that the other opinion might be offering.
  • know that wisdom is ‘the art of the possible.’ The key question is no longer ‘How can I problem solve now and get this off my plate?” It is “How can this situation achieve good for the largest number and for future generations?’
  • continue finding and sharing new data and possibilities until they can work toward consensus from all sides.
  • want to increase both freedom and ownership among the group—not subservience, which will ultimately sabotage the work anyway.
  • emphasize the why of a decision and show how it is consistent with the group’s values.”

We can cultivate this kind of leadership. The challenge, of course, is learning how to organize communities in these ways when there are so many cultural pulls to keep organizing ourselves in top-down models. But new ways are always possible. They lead to an empowered community.

And sometimes, a community has to become empowered enough to say, “We want that.” When this happens, the community itself is the leader.

Renee Roederer

 

Taking Heart

heart flowers

What would feel like to take heart just a little bit more today?

To remind yourself that you’re worth loving?

To remind yourself that people are indeed working for good in the world, even in the midst of pain?

To remind yourself that you’ve been surprised at other times, so why not be surprised by goodness again?

To remind yourself that taking heart, while vulnerable, is really giving heart by allowing ourselves to have hope and trust, and that this can actually lean into the creation of goodness in the world?

You’re worth that risk.

Your neighbor is worth that risk.

Renee Roederer