suffering and privilege

On suffering

This is going to be wildly unpopular. Usually I would express this to a close friend, but I feel at times that just makes both of us more miserable and heaven forbid anyone catch us being pessimistic. That's the ultimate sin, if you haven't heard. 

So I guess I'll just be publicly pessimistic. 

I saw this message on an Evans Syndrome group I'm in from a young woman from Venezuela. Evans Syndrome is a rare autoimmune disease where the body creates antibodies that attack red blood cells, white blood cells, and/or platelets. It is not well understood and can be difficult to treat (please see: Eli's entire physical demise). This message was posted in Spanish and automatically translated to English, so it is not perfect. 

"My husband takes 7 months dealing with this disease. Its values are going up and down. Looks like a roulette wheel that we don't know where you are going to stop. We live in Venezuela and we are in economic crisis. Political and social. You can't get meds. Now he's taking prednisone but we now have very few and in the whole country is not achieved. We are in the hand of God. All his words we provide guidance because we still don't understand this disease. A thousand thanks"

I watched a little boy die last week the same way Eli did, in the same place Eli did, from the distance of social media. 

A boy we met at Duke, who had a painfully long and bumpy journey through bone marrow transplant, had two seizures today very unexpectedly. He's back in the duke bmt unit tonight because he needs very specific and specialized care based on everything his body has already been through. 

And this woman is desperate for medical care she has no access to for her husband in the middle of chaos and unrest. 

There is no safety net. There is no plan or exit strategy. This is just the unfairness and suffering of life. This is why I can't pray and why I think healing is a response to medical care not supernatural intervention. This is why I think your #blessed life is mostly just your privilege to be born in a stable and developed country. Shit, I'm so privileged I took every opportunity to ruin my life in the pursuit of saving my son's life. I mean that sincerely. I had the opportunity to disrupt my family, quit my job, lose my certification, financially ruin my family, and drive myself to some level of insanity. I made most of those choices because I had the opportunity to do so. I'd do it all again. But this woman in Venezuela does not have any privilege to mortgage her life for better medical care for her husband. 

I cannot stand manufactured problems. I am also paralyzed in awareness of suffering and lack of reprieve from it. 

I'm less angry at God and more frustrated with people who believe God actually does anything. That's probably not fair. Neither is the real and endless suffering that people are enduring out of lack of privilege. 

Healing and not healing and being on fire

Is God in the healing business? People say this, but I'm just not sure. I don't know if you can watch the number of kids I have watched suffer and die and still believe that declaring healing in the name of Jesus is a real thing that has any bearing on reality at all. Maybe you can. I cannot. 

Praying seems a lot like wishing. Wishes aren't in the habit of coming true. 

I think rather than the business of healing, God might be in the business of loving. I'm not completely sold on this either, but it certainly seems more likely. I saw a quote from Bob Goff today that said, "sometimes instead of an answer God sends us a friend." That's a pretty accurate version of the life I got. I will give Bob the benefit of the doubt since he said sometimes. Some people get both-the answer and the friend. Some people probably get neither. That's freaking terrible. 

I told a friend today who also has a dead kid that this is the absolute worst club in the whole entire world, made up of the best people in the whole entire world. It's hard to live in a world where such deep, deep sorrow and such utter beauty coexist. It feels like calmly watching the most breathtaking sunset while being on fire. How is everyone walking around like business as usual? And how am I supposed to? I mean, the sunset was truly beautiful, but I am on fire here. How am I even still alive? And will I never not be on fire or will this consume me? 

Please refrain from telling me I will not be consumed on the basis that you'd rather I not be. It could go either way at this point. I just doubled the amount of counseling I'm receiving on my counselor's observation that the current schedule is not cutting the mustard. History is chock full of people who were ultimately consumed by their loss. Mary Todd Lincoln and Horatio Spafford (yep, the guy that wrote "It Is Well With My Soul") for starters. (Spafford wrote It Is Well while he was in shock. Shock comes first and says, "It Will Be Okay! We will survive this! It's not so bad." Grief comes later, takes up residence, and says, "Um no, it's bad. It Will Definitely Not Be Okay. You Are Not Okay. You Will Not Be Okay." And then you just walk around on fire. Spafford's shining moment did not last and he went a little crazy later. This should probably be an entirely separate post.) 

If you are a person who needs healing in some way I truly hope you are met with healing. Be it science, or a miracle, or a miracle of science. Any are entirely possible. But if you don't experience the healing you are looking for, I hope you have or are given a friend. It helps with the being on fire. 

Mother's Day

I'm in Durham. And I wish I had brought my laptop. But here I am typing on my phone.
Tomorrow is the Rainbow of Heroes walk honoring past and present Duke Pediatric Bone Marrow Transplant patients, and raising money for the Duke PBMT Family Support Program. It's always the first Saturday in May. So basically once every seven years it happens on Mother's Day weekend, like it is this year. And really, I can't think of a better way to spend Mother's Day weekend than honoring the son who isn't here to kiss my cheek and put his little arms around my neck.
I hate this. But I love him more. I have had the opportunity to say his name and hear his name spoken more times today than I have maybe in this entire year. What a gift.
It is entirely possible that I'll feel differently in the future, but the chance to talk about Eli and see people that knew him, even if only when he was sick, sounds like the sweetest Mother's Day gift available to me.

Driving into Durham, it truly felt like I was going to the hospital to see Eli. As if I could head to the fifth floor and there he would be, exactly as I left him, asking me to tuck his feet in and snuggle him. If only. It was completely surreal.
Being in Durham is complicated because I simultaneously feel a little at home- there's the chick-fil-a where my car broke down, there's the craft store where I bought yarn, there's the baseball stadium where we were going to go when Eli got better, and here is the complete lack of a Walmart or target within a close proximity to the hospital- and I also hate this place so much.
Tomorrow is the big day, the big walk. I haven't seen any of these people since last July. But they cared about Eli, and about me, and about our family. So I don't care how much I cry or even if jealousy attempts to rear its ugly head when I see the kids who are doing well. They were all my home away from home, my support system when I was so far from my community. They will always hold Eli precious in their hearts and I will always hold them precious in my heart. The doctors, nurses, support staff, BMT families, these are people I will never let go. We have witnessed the most terrible things and soared on the most promising of hopes. We are both better and more broken for knowing each other.

Day 366

Today is one year since Eli's transplant. It would be day 366.

I just keep thinking about last year. How we were so damn hopeful. It felt like we had been treading water for so long and FINALLY we were doing something proactive. Something that could/would heal my baby.

It was our only hope. Of course we were hopeful.

Bone marrow transplants typically have a 90%-91% success rate. Eli's bone marrow doctor told us he thought there was somewhere between 50%-80% chance it would work. Eli' immunologist thought it was in the ballpark of 60%-70%. But a bone marrow transplant not working could mean death or it could mean the cells fail to grow and another transplant is needed. A second transplant is always more risky.

The day after Eli's transplant, Jerry and I went out to eat. I think I was eating mussels, but it may have been oysters. I took a bite and my molar came down on something hard. I was temporarily horrified. I fished the hard thing out of my mouth and it was a pearl. A true pearl that had formed in my mollusk from a grain of sand under immense pressure. And it felt significant. It felt meaningful. It felt rare. So I kept it.
I've had my pearl in a baggie in my purse for nearly a year. This week I received a silver charm imprinted with Eli's fingerprint, which I had ordered a couple of months ago. The Duke BMT Family Support Program provides one fingerprint charm for every child that goes through bone marrow transplant. You can order more through them as they receive a reduced rate through the company they use. We were finally able to get Eli's fingerprint on a piece of cardstock when he died. He hated feeling messy so we kept putting it off. I finally ordered my charm of his fingerprint in February. When it came I knew I needed to put it in a chain with my pearl. I now have a charm of Eli's condensed ashes (about the size of a pencil eraser), a charm of his fingerprint (about the size of a dime), and my pearl in a pearl cage, all on a chain. And I love it.
Just because what I hoped for didn't come to be doesn't mean my hope was unfounded, and it doesn't make my pearl meaningless. Of course we had hope. We had hope so powerful you could practically touch it. It felt contagious. Even though it hurts to remember that hope now, it was right and true at the time. And even though I thought my pearl symbolized the struggle of Eli's health and moving toward a beautiful life with him, I'm glad I kept it. It doesn't symbolize any particular struggle or hardship for me anymore. It symbolizes a moment. A particularly hopeful moment. That hope is good and hope exists, even if I don't have any of my own.

We're going to the Suns game shortly in Eli's honor. I have mixed feelings about it. It will probably be a lot of socializing, which is hard, but I knowingly brought that on myself. I know a number of people will be there and it is so kind of them to give their Sunday afternoon in a gesture of love. We have the best people.
I am going to eat french fries with loads of ketchup and salt and that is going to be amazing.

Women's conference

This is a difficult story for me to communicate well because it is deeply troubling and emotional. 

Shortly after Eli died, within 2 months, I went to a women's conference taking place in my city. Several of my friends were going and had gone in the past. Some of these women had been mentors to me in the past half dozen years. They spoke highly of this conference and how much truth they always found there and how it was always a powerful spiritual experience. I was trying so hard to find "normalcy" after being separated from my family and community and support system and everything familiar to watch my kid suffer and die over seven months. So I went to the conference.
There was a well known male christian author and speaker as the keynote speaker. This was not exciting to me at a women's conference, because why was a dude there? I would have preferred to hear from a woman. But I figured the folks that put the conference on who are well respected knew something I didn't or just felt like this guy was the right fit. Fine, no biggie, I can get over myself (sometimes).
One evening of the conference this man was giving a talk and I was taking notes here and there. My perspective was he was dancing a little too close to the prosperity gospel, but again, I was with people I trusted. He never went full prosperity gospel so I pressed on in giving the whole thing a chance. Then he said something that made me freeze. My breath caught, my body froze, and a chill went down my spine. He said God only takes something away when He has something greater for us.
What? Hundreds of thousands of people had just prayed for my sick baby to be healed and God did not answer our pleadings. My baby died. Are you saying God took away my baby so that He could give me something more?
There are so very many reasons this is a crock of shit, I could fill an encyclopedia with them. Here are just a few: this is not in the bible; in what we know of the nature of God, God doesn't seem terribly linear, but this is a completely linear statement; what exactly is it that is so much greater that God will grant me now that I have buried my child? What has God granted other bereaved parents that is so much better than our kid we used to have?; and on and on. One thing that happens nearly across the board for bereaved parents is we use child loss as a sieve to sort out truth. If something is really true, it will be true in my situation of having a dead kid. If it doesn't stand up to child loss it's just not true. Spoiler: the vast majority of things people say and believe cannot be true.
Back to the conference. I didn't storm out, I didn't have a panic attack, I didn't stand up and start screaming at the guy. I waited until the end of his talk, which closed out the evening, and approached him. I wanted to give him a chance to explain himself. I wanted to hold up his statement to child loss and I wanted him to say, "No, that's not what I was saying. You misunderstood. It's like this...." I really, really wanted him to say that. I half expected he would.
I waited for several other women to speak with him and then he looked at me and I started crying. (I hate crying in front of people. I hated that I was crying, but I could do nothing about it.) I told him that my 4-year-old son had been very sick and in the hospital and had suffered greatly and ultimately died, and that what he said, that God only takes things away when God has something greater to give, doesn't add up for me. I hope you are picturing me FOR ONCE not being self-righteous, not being sassy, but being open and honest, asking instead of trying to prove something, laying it all out. Because this famous christian speaker/author looked at me in the face and said, "Perhaps God has another son out there for you, a son who doesn't have a family." It immediately became clear to me that he had no idea what he was talking about. None. Because I replied, "Oh, well, I already have a son who came to me that way, but thanks anyway." And I left.
WHAT IN THE ACTUAL FUCK. One child does not, will not, cannot replace another. Ever. What does it say about God if you believe that God took my son away so I'd adopt a child? If you think that, please don't adopt. Ever. Children who are adopted do not need that type of love and care. They need true, unconditional love. Also, if you are one that thinks that God lets kids die so their parent will adopt a "less fortunate" child, you should stop talking to people, especially with a microphone in front of your face, and also stop writing books. That is not a god that anyone wants to know or believe in. Who the hell says that to a person who is baring their soul about their dead child? What is wrong with that person?
I did not go to any other sessions this man was at, but I did go to the closing session, where a well known and respected woman who had basically developed the conference was speaking. She said she felt the Lord moving in her to address some things, but the cynic in me says she had to do some cleaning up after the keynote crapped out of his mouth. She started off by going off topic and talking about suffering and how God doesn't cause our suffering, and God doesn't give us suffering in order to teach us. That's not how it works. And I appreciated the hell out of her for saying that. She said some other things that seemed true enough and stood up to the sieve of child loss.
So that's my story. I'm not going back next year.

Some notes:
-In hindsight, that was bad timing to go to a women's conference. Two months is nothing. But my life was so weird after coming home, I could hardly feel gravity for awhile.
-I still love and treasure the women I went to the conference with. Just because it turned out bad for me doesn't mean they had anything to do with it.
-I push back against using the pronoun "he" in talking about God. God is neither male nor female, but using He gives us a picture of a wise grandpa or some such character, which is not God. I try to only use the word god for God when speaking for myself, and it can be repetitive. Sorry not sorry. I generally only use "He" when that is what someone else has said.

It doesn't really help

My grief counselor just came back from maternity leave, so we have been catching up on how things have been going since I last saw her in January. When I look at the last three months I can list all of the things I've been doing and working on for my health and my mental health. I started running (...again) and have been training for a 5k. I started weight watchers and it kind of makes me crazy, and I haven't exactly stuck to tracking every single thing I eat, but I have been eating really healthy, cutting sugar, drinking copious amounts of water. Progress is slow and steady. On my non-training days I either do a workout video or go for a hike. I've been getting outside. I've gone to the doctor and the dentist because it's been years... And I've been doing the things the doctor and dentist told me to do. For all of the celebrations that have come along I've done something good for someone (valentines for kids in the hospital, party for refugee kids for Eli's birthday). I have gone to a few social events. I see my friends. When I'm able to focus I read or crochet. I let myself rest a lot (and try not to feel guilty).

And none of it helps.

Sometimes I have a good day. Sometimes there are weeks and weeks where I can hardly get out of bed. There doesn't seem to be any rhyme or reason to any of it.

Sure, there are certain days that are just going to be hard no matter what. Birthdays, holidays, medical anniversaries, etc. But I've been down for the count since about mid-March. And today is the first day I'm not finding my way back to my bed. Yet.

My counselor told me that she's not surprised nothing is helping. That it's good for me to be doing these things, all the same. But there is no fix. And there never will be.

If you need me I'll probably be laying in bed, convincing myself over a two-hour period to go for a 30-minute run.

Getting screwed

One thing that I continue to be tormented by is this idea that our decisions in Eli's treatment caused his suffering and death.
I can logically say we did not have a choice. We went to the very best doctors, we tried with little to no success to keep Eli as stable as possible, he certainly would have died without a bone marrow transplant, it was our only option. These things are all true, I think. But the medical treatment was brutal, inhuman, suffering. And I watched it. And I signed release after release, consenting to more, more, more interventions. So it feels like I did it to him. And he didn't deserve it, any of it.
But I am also able to recognize that there was nothing else we could have done. We were screwed, he was screwed, from the moment he was born. Florida started screening for immune deficiencies (T-cell related deficiencies) 17 months after Eli was born. Immune deficiencies are rare and difficult to diagnose outside of newborn screening, and even now Eli's has yet to be discovered. Even after all his treatment, even after $22,000 in genetic testing, we still don't know exactly what was wrong with his immune system. It's not understand and so there isn't a name for it. We just don't know. His DNA was supposed to have been sent to a researcher doing indepth immune studies on a specific gene, but I am not waiting for answers that will not come.
Yes, he had Evan's Syndrome. Yes, his body created antibodies that attacked his red blood cells, white blood cells, and platelets. Yes, it was severe and not well controlled and what led him to bone marrow transplant. But this is an autoimmune disease which in Eli's case manifested as a result of a malfunctioning or non-functioning immune system. The malfunctioning/non-functioning immune system could have been identified at birth. But not until September 2012 when Florida expanded newborn screenings to include immunodeficiencies. Too late for Eli, too late for us.
We have friends whose child was born one month prior to the implementation of immunodeficiency newborn screening in Florida. Their child is dead now. One month made the difference. One month of the governor (Rick Scott) playing political games. Really. It cost their family their child's life.
How do you live with the knowledge that no matter what you did, you were screwed from the beginning? That your child would likely die, you just didn't know it? That your child's best chance was a coin flip and it necessitated some of the worst suffering? That you agreed to put your child through all of that?
If I figure it out I'll let you know.