what I said at my husband's funeral

Lee and I met in New Orleans over New Years when I was 18 and he was 19, both of us freshmen in college, me at UNC and him at NC State. I tried to set him up with my friend Katherine, because she saw him first and that meant dibs, and I’ve never been more grateful for a failure than I am for my failure to be a matchmaker for the two of them. We fell hard and fast for each other in a matter of days, and right before we kissed at midnight, we made the New Years resolution that once we were back at school, we would try to make this thing work.

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Sounds like a movie or something, right? I couldn’t make this stuff up, though. Our love really was a fairy tale.

We weren’t just Instagram filtered happy. We were happy. We were never one of those couples who existed in parallel to each other: no, we have always been so intertwined that it’s hard to tell where one of us ended and the other began. And yet, here we are.

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Our first Valentine’s Day together, I had what student health called the worst case of mono they had ever seen. So we could celebrate, he showed up to my dorm room with a stuffed bear, some bland grocery store sandwiches that he knew I could stomach, a couple bottles of Gatorade, and a bag of Hershey’s Kisses so, as he said then, “I can still give you kisses.” He also brought battery-operated candles because this was in my dorm and real candles weren’t allowed. He was always more of a rule follower than me, him the steady while I’m the swirling.

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I share that Valentine’s Day story because it is such a Lee story. He showed up in whatever way you needed. And he’s still showing up, in the ways all of you are loving us so well. Together, Lee and I stepped out in faith into so many hard and complex situations, trusting that we didn’t need to have it all figured out just yet, but that our people and our God would sustain us, and now I’m venturing into this new and unwanted reality with that same sort of faith.

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C.S. Lewis once wrote that death is an amputation, and it sure feels that way right now. I feel like we are missing a part of ourselves. Lee and I had a joke between us, based on the Bible verse about how marriage is two becoming one flesh. We’d be talking to someone, and if they asked something of us and I said “sure, we can do that!” then after they walked away, he might whisper, “you meant that as the one flesh we, right?” And I would reply, “oh, yeah. I definitely meant you would do it. One flesh, right?”

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I don’t think C.S. Lewis was right, though. His analogy is based in the ableism that says amputation lessens a person, but I know all of us who were touched by Lee are made better and fuller, our hearts made even more whole, by having him in our lives. The night I told the kids, one of them asked me, “why does this place right here hurt so badly?” I think a lot of us relate to that right now. And I’ll tell you what I told him, “it’s because you love Daddy big and he loved you big. We have big hurt right now because we had big love.” And that’s how it is - we’re always changing and growing, even having memories turn a bit blue like in the movie Inside Out when sadness touches them. 

And having known Lee, none of us are made less by any of this. He made us all more, more of the people who God created us to be. As he often told the kids, “be good humans,” and we are all better humans because of him.

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Another of the kids said to me recently, “Dad said once he wanted people to wear bright colors to his funeral and have it be a celebration... but I don’t think he knew he would die so young.” I agree. I’m not feeling colorful today, though his casket was one bright color and the vault for it painted bright red with an NC State logo on it, which shows how much I love him because - remember - I’m a Carolina girl. 

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I want to leave you with the words of one of our youngest ones, a greeting she gave to some visitors in our home this past week. “Hello. This is our house. In this family, we always have big feelings, but especially today. You can cry or you can laugh or you can do whatever you need to do. Whatever you feel is okay.”

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Amen to that.

Our GoFundMe is still live, and all funds - even those over the goal - come to us. (And finance nerd friends, rest assured we have an accountant and are covering bases there.) We are beyond grateful for the love shown, especially that the average donation is $50 for the $300,00+ raised so far.

This week I’m assessing all things financial with the help of friends: learning what bills we have and how we pay each bill and what our monthly expenses are, all thing Lee knew or did. All that to say, we set an initial goal, but? It was arbitrary because I don’t even know what the heck for anything.

So grateful for all the help we’ve received so far and will receive as we figure all of this out. I know I can do this, with our amazing support system here, but I really hate that we have to.
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Dingle, party of 7

My partner, my love, and my home died Friday, July 19, after a freak accident. Lee was playing in the waves at the beach with three of our kids Thursday, July 18, and an intense wave hit him just right to slam his head into the sand, break his neck, and make his throat swell so much his brain was deprived of oxygen for too long to recover. Some heroes - including our kids - tried to save him, but it wouldn’t have mattered what they did. His body couldn’t recover from the initial injury.

We met when I was 18 and he was 19, and we’ve been together ever since. I wasn’t supposed to be saying goodbye at 37. I don’t know how to be a grown up without him, but I’ll learn. I just wish I didn’t have to.

(To help with all that is to come, friends set up a GoFundMe for us here.)

If you didn’t know him, I’m sorry. You missed out. As you hear people share stories, you’ll think, “no person can be that wonderful,” but? He really and truly was.

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In all this, I’m discovering I have the world’s best people. We all feel so held right now, but the person we’d like to hold us won’t do so this side of heaven. I didn’t know it was possible to feel both so loved and so empty all at the same time. This will be a long haul, our lives forever changed, so please keep loving us well months from now

Details to come about all the things. Please pray for us.

Please pray too for Lee’s parents and Lee’s sister and her family. They lost a beloved child and brother.

And, you know, feel free cuss and smash stuff because God knows I’ll be doing some of that. (And breathing and hydrating and eating and taking medicine and all those self care things because I am worth it and because I have 6 little people to parent.)

The strangers on the beach and emergency responders from Oak Island and later medical professionals who worked on Lee are some of the finest and best people in the world. Additional response from Oak Island leaders, including the mayor, has been compassionate and kind. Please know that, if anything, everything involving Oak Island has made me certain it is the finest beach community there is. No one can give us back the one thing we want, but they did and have continued to do literally everything else possible.

I wish my symptoms could be measured

I like symptoms that can be independently measured, outside of my own testimony. I like blood pressure and pulse and even weight in our fatphobic culture. I like obvious damage in x-rays and MRIs. I like mammograms because they are looking for something others will verify as they review the scans. My thyroid levels, my blood sugar, and range of motion measurements are numbers that make sense.

Pain levels aren’t clear. Cognitive functioning is hard to quantify. You have to take my word for it when I talk about fatigue, about my body feeling heavy, about heat intolerance.

For a survivor of sexual assault, I’ve learned my word isn’t enough for some.

Why would my testimony be proof of health but not sufficient evidence of crimes? If I wait a while with symptoms, will I be asked why I didn’t report my concerns sooner?

Women aren’t believed, and I’m not talking about rape here. No, women are less likely to receive pain medication, more likely to wait longer for treatment, and more likely to be misdiagnosed with a mental health condition when they have physical symptoms than men under the same circumstances. (Side note: the research generally assumes a gender binary, so I’ll be using the men/women dichotomy here.) Even after major heart surgery, men were twice more likely to be offered opioid pain medications than women… even though women feel pain more acutely than men. This powerful essay describes the incredulity of a husband through his wife’s - in her own words - “trauma of not being seen” when she was ignored for hours in an emergency situation. When they have brain or renal tumors, women are more likely to have to go through more appointments before their diagnosis than men with the same tumors.

Among women, though, I am privileged because of whiteness; black women are more likely to have strokes and less likely to survive them than white women, and they’re more likely to be misdiagnosed for or die from breast cancer. Black women are more likely to die from cervical cancer or die following childbirth, the latter truth illustrated well in the story of Serena Williams who is only alive because she advocated for herself (and probably would have been ignored if she weren’t a well-known champion athlete).

Knowing what I know about women being (dis)believed, I want to measure my complaints with precision. That’s not always possible. I’m going into an appointment tomorrow (Monday) morning during which a CT scan will likely be ordered. But that unbelieved little girl within me worries that my word for my symptoms isn’t enough for the next test to be deemed necessary.

I know I’m a powerful self advocate. I know I can push for what I need. I know how to fight for myself and my health.

But I’m tired. I don’t want to have to fight. I don’t want to be mindful of every word so that my doctor understands the point, so that my symptoms will be taken seriously, so that I can get the care I need.

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I want my pain, my malaise, my intolerance to heat to be graphed like my cortisol levels can be. I want to be able to give an undeniable number for my fatigue. I want to be able to show my symptoms in a way that no one can minimize.

But it doesn’t work that way. I’m learning to trust my body, my word, my resilience. I can’t ask doctors to do that, after all, until I can.

I'm not better yet.

I’m not better yet, and I really wanted to be. 

(Well, as better as I get, for a woman with a handful of chronic health conditions.)

I want to be at the end of the story. I want happily ever after. I want to feel good.

But I want to be real more than anything, though, so I’m not going to bullshit you. I’m sick. I fought like hell to live as a kid, and now I’m doing the same.

My arms are too weak to push myself up from bed. Ten minutes in any heat makes me feel as hot and wiped out as a day at the beach. I’ve gained 65 pounds in the past couple years in ways that are symptomatic of a problem. My mind gets all tangled from time to time. I am exhausted all. the. time. My body feels like it weighs two tons whenever I try to stand up. My stamina is nonexistent.  

(Side note: here is what we are not going to do, though: we are not going to assume we know each other better than we do. Unless you’re my doctor, my bestie, or my husband, you don’t get to prescribe “have you tried…” or “maybe it’s…” That is not helpful. I have a top-notch team of medical professionals, and they are not you, and we are making progress, so no thanks.

Also, someday I’ll write a post about how exploitative it is to friendships for you to show up in DMs - especially when you’ve never DMed before - to sell me some miracle cure/shake/oil/program when you’ll financially benefit from my purchase.

Again, not helpful and so many assumptions.

Also, implies that your friend is not doing enough to be healthy.

And? I miss the friends some of you used to be before you wanted to cash in on my struggles. So, please, no.)

I can’t tell you how my last speaking engagement went, because I got hot and anxious and jumbled almost immediately. People who were in the room had never heard me before, so they had no clue that i was so disoriented the whole time, but that was the last straw for me. I took a four hour nap immediately after I spoke. I knew I needed help. Something wasn’t right.

That’s what health self-advocacy is all about, after all. It’s knowing your body and making it known to medical professionals. It’s not returning to doctors who don’t respect your self awareness or don’t treat you like an equal partner in your own wellbeing.

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For me, it’s extra scary. I have PTSD. Touching me is something earned, and doctors aren’t friends who’ve proven themselves to be safe. Yet to be healthy, I have to let these lab-coat-wearing folks touch me.

(Reminder: I am not seeking advice with this post. This is a good opportunity to show empathy to a person without trying to fix them.)

Sometimes self care - real genuine care for oneself - is no fun at all. I’m the mom of six, and I can absolutely tell you that caring for others isn’t always fun either. I remember caring for Zoe in Taiwan by force-feeding her with a syringe until we got to where we could access the medication she needed to eat without pain. That care was needed, but it was not fun.

Yet we too often talk about self care in terms of massages and bubble baths. Sure, it can be those things, but that’s the polished and privileged form of self care. Real care isn’t always pretty.

I don’t know what is coming next. I don’t know if I’ll be better like I hope. I’m not sure I remember what better even feels like.

I do know one thing, though: we often wait to share stories until they’re resolved, and this means we' don’t know how to live through the messy middles and we don’t know what to do when we’re invited into someone else’s. But we can learn. I’ve shared this before, but my husband - when words fail and nothing else seems right - will say, “empathy,” to me. Just the one word. Empathy.

It’s his way of saying, “I know this is a big deal, and there’s nothing I can do to fix it, but I’m here and I’m with you in it.” It’s his way of making sure I know I’m not alone. It’s his way of reflecting Christ to me.

I think we all can use more empathy, because more of us are in the “not yet” part of our stories than we’d like to admit.

So here's what we are going to do:

If you aren't sure what to say but you want to leave a comment, simply reply with the word empathy. I don't need fixing or pity or advice.

I need people.
I need empathy.
I need you.

None of us are meant to struggle alone, after all.

drowning doesn't look like drowning until it does

It’s been a weird few years.

Usually when white people say that nowadays, they’re talking about politics. They’re talking about their discovery of the inequities always known by those outside of majority culture. They’re talking about the process of now knowing after not knowing.

Sure, there’s been some of that for me too. That’s not what has made the past few years weird for me though having so many friends weather the weird because of public shifts has made me feel less alone as I did so with personal shifts.

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My personal shifts haven’t been completely private, so some of what I am about to share will be old news while some might surprise. I’m going to tell it through the story of my knees, but you’ll find that this is much more than that story. It’s much more than my story, I’m realizing too. It’s a story of how drowning doesn’t look like drowning until it does.

My knees looked fine, as far as knees go. I’m not sure they’re anyone’s favorite body part. The function is helpful, but otherwise, they’re just there, waiting to be skinned or to fail.

When my knees first failed, I was at an age at which they still wore childhood scabs. It wasn’t supposed to be like that, but it was, all at the same time. By my father and my older brother, my body had not been my own for a long time, maybe ever, so nothing felt incongruous to me about my kneecaps being forcibly dislocated as my legs were spread against my will.

I was 11.

I didn’t tell anyone until I was 15, because I didn’t know how to say what happened without feeling like I was telling on myself. I knew what happened was wrong, but I didn’t know I wasn’t wrong along with it. I didn’t know how to tell the story of my knees without confessing something primally disorienting. Daddies are meant to protect their young, but mine should have been a protector by trade too. He wore a badge, a uniform, and an officer’s rank. Both our large metropolitan county’s sheriff’s office and our country’s Green Berets in Vietnam knew him well.

So did my body.

At 15, my kneecaps finally dislocated in a public place, in the ordinary act of climbing in a van. Other people saw. They asked if it had ever happened before, and I said no. I still didn’t know how to say yes. I still didn’t know saying yes wouldn’t be the same as saying I was a whore. I still didn’t know if I could tell the truth that incestual abuse had evolved into other men being invited into our home and my body without my consent, because I still didn’t know that I wasn’t complicit in my trafficking. I still didn’t know the truth that none of it was my fault. My knees knew, though, and they told some of the story before my words could.

A condescending doctor dismissed me as my mother spoke over me, telling him this was a one-time incident when she and I both knew it wasn’t. I went to physical therapy. I learned how to strengthen muscles to compensate for my injuries, which seemed about right. I had been compensating for injuries in secret my whole life, with my earliest memory being one of terror as I ran from physical danger in the form of a family member. I don’t remember what happened after I got caught, and I think that’s probably merciful.

I started to tell parts of the story, bit by bit. I earned a scholarship with an essay I had to recant once my mom found out I had written about the abuse. While the committee couldn’t prove my original story was the truth without my cooperation, they still awarded me the honor. I imagine they thought they were helping, hoping to be guardian angels for a young woman in need of a legion; and they were.

In high school, I told my story by extreme perfectionism, not just trying to be perfect but needing to be to earn love and belonging. (I didn’t know those were my birthright.) In college, I told my story with binge drinking and bulimia. Going back to age 11, I told my story with thin lines carved into my forearms and upper thighs.

It was socially acceptable to be a perfectionist, a problem drinker, a sickly thin girl, and even a cutter. Being a teenager who had a decade of sexual and physical and emotional trauma behind her, while walking on knees that told a story that my lips couldn’t? That wasn’t anything anyone wanted to hear. It was socially acceptable to talk about the horrors of sex trafficking but I noticed it was not socially acceptable to be a survivor of it. I knew no one who told that story.

If they did tell it, it never included happy endings. It never included love. I never expected mine to include that either.

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I didn’t mean to fall in love. Lee was an accident. If I had seen him coming, I would have tried to protect myself by pushing him away.

Because he loved me, I started to believe that maybe I had never been wrong after all. I started telling more pieces of my story. I started to see doctors who could hear parts of my story and treat injuries that should have been treated years before, injuries that shouldn’t have ever happened to need to be treated.

I knew how to do, so I kept doing. I didn’t know how to be. I didn’t know how to breathe. I didn’t know how to rest. I didn’t know how to care for a body that had only known neglect before him.

I don’t talk about my love story with Lee often, because I like to play a cynic but can’t keep that up as I acknowledge how much of a fairy tale I entered when I met him. He isn’t perfect. I’m not perfect. Life isn’t perfect.

But somehow that doesn’t matter with him. It never has. But I have always mattered to him, in a way I never knew I could matter before he happened to me.

He happened to me eighteen years and four months ago. Our fairy tale has looked picturesque on the outside, as our stories weaved together into the lives of our children through birth and adoption in ways we hadn’t expected. People fell in love with the idea of our family, and they couldn’t see my gasps for air because they had placed me on a pedestal too far away to check my vitals. Oddly enough, I was better than ever before, but being better meant I could finally see the cracks, not that they were gone.

Even as I saw therapists and specialists and had a few corrective surgeries early in our marriage, I was still drowning on dry land. My knees had looked mostly fine. I knew how to compensate, still, and I used that to downplay the increasing erosion of joint and spine function, as the years of violence stopped hiding below the surface, as my history met my present, as my body revealed it had been keeping score all along.

That’s the story of unbecoming and becoming, not linearly but cyclically, that ushered me into the weirdness of these past few years. That’s how I ended up having seven major surgeries in less than two years, the last one in September. That’s how I ended up here, in such a different space than I used to be. My personal weirdness happened to coincide with America’s political farce of fact and fiction, and it was nice to collide with my internal reckoning while the rest of the world watched - and continues to watch – our country’s collective external one. That’s how I felt less alone.

Yes, politics plays a role in my unraveling from chaos into something still taking form today but not quite there yet. For me, it hasn’t been the catalyst it has for so many others. Sure, I’ve written about the impact of this administration, but for me, that’s been the side story not the central one.

Sometimes the sideshow distracts from the larger story. It has for many who have been following along with mine. And it reminds me of something I learned in my lifeguard training, not long after Lee and I met.

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Drowning doesn’t look like drowning until it does. The splashing and struggling isn’t the danger. No, I blew my whistle for that to prevent injury, not because it was already there. Drowning - real drowning - looks like almost nothing at all. It isn’t splashy. It is a slow slipping under, a gradual burial that isn’t obvious until it’s too late unless you know what to look for.

I’ve been un-drowning for a few years now, and breathing deeply without gulping down waves of misplaced blame, shame, and guilt still feels foreign. My knees are as fixed as they can be, but they had to be literally taken apart and reassembled through four surgeries. That part of the story, the surgeries and recoveries, has been visible. The part of the story in which my soul has done the same has been harder to see, mainly because it was never meant to be seen until now. It was reserved apart from those who aren’t intricately woven into my private world, at least not while the story’s words were still being intimately crafted from wounds into scars.

Some of you met me when I was drowning but looking dry. All the transition that’s been happening in public and private has been cohesive in my larger narrative but probably confusing from the outside. Even questions like, “wait, another surgery? what in the world?” are ones that have been completely logical while also being heavier questions than they seem on the surface.

The heaviness of them, the years of unpacked griefcases underwater, were my iceberg, while the world only saw the exposed tip. As I’ve thawed and began un-drowning, the unpacking has made me seem different from before.

And I am.

I used to think that was wrong. I valued consistency in viewpoints as if that were a sign of integrity. I’ve learned now that real integrity includes room for growth and change and learning and unpacking, of being somehow the same and yet completely different all at once.

I know, though our stories aren’t identical, my words resonate with you. I’m not the only one experiencing this state of sameness to and difference from the person I once was. I know, too, that many others are drowning, just like I was, but it isn’t looking like drowning, not yet. Because drowning never looks like it’s drowning until it does.

I am not alone. You are not alone. Those who are drowning imperceptibly aren’t alone either. We were each made not only to be human but also to be bound to one another in our shared humanity.

The world seems like it’s at least half ruined, but it felt that way when I was 11 too. Some of the ruin is still ruin, yes, but some of it has been redeemed into something like hope. If you’re disoriented by all the differences or drowning in them, I’m here to let you know that the beautiful and horrible reality of life is that it always changes.

That change is inescapable, but the drowning doesn’t have to be. We can figure out how to swim, not on our own but by learning from each other. It’s been a weird few years, yes, but our griefcases don’t have to anchor us in sameness.

Drowning doesn’t look like drowning until it does, after all, but drowning doesn’t have to be inevitable.