Saturday, July 30, 2016

Ideological Bubbles are for Popping

Four years ago I argued with a woman who was absolutely convinced that Obama hated America. It took me several pages of argument to realize that she was not speaking in hyperbole. She really thought that his agenda was to destroy the country. She did not think it was a secondary effect of a well-intended agenda. She saw a hatred and vicious anger which, even with her help, I never could see. I was baffled. To be completely honest, I remain baffled. I also remain in touch. She is still my friend. Now she is saying that and other similar things about Hillary. And I am still listening. It is not that I think she is right, but I think that understanding her perspective is valuable. Partly because she is a friend and I love her. Partly because she is not alone.

This year, I enjoyed the primary season debates under the hospitality of a friend who hosted conversational commentary. He liveblogged his opinions and we joined in. It was great fun, though it may have skewed my sense of normal politics. The people were mostly a mad mix of left leaning pro-life Catholics and refugees from a republican party gone barmy. Discussion was humorous, irreverent, and not strictly partisan. We were a kind of homeless band.

But as the season goes on, partisanship is rearing and roaring. Election years can be hard on relationships and this year is harder than many. It always feels like something huge is at stake. Campaigns are well funded advertisements designed to make us feel that way and they are very effective. This year a lot of people rooting for candidates on either side insist that this election could be the very last election, unless we vote correctly. America as we know it could disappear.

I have seen several posts admonishing friends with disparate beliefs to shape up or ship out. Unfollow me if. Unfriend me if. Disconnect from me. Go away. You are invading my ideological bubble.

I am not doing it. I am not cutting you off. You can unfriend me or unfollow me or stop contact in whatever way we keep contact, but I am not doing it. You have to be the one. There are exceptions, of course. I have friends who have had pictures stolen and turned into memes. I have friends who have had people accuse and abuse them and their families. There are lines that I will draw to protect myself and the people I love, but disagreement is not one of them. You can disagree with me about just about anything and still find yourself welcome. I want you here. I want to hear from you and about you.

One of these posts struck a nerve yesterday, when a priest friend asked that anyone who is a democrat or is voting for a a democrat should unfriend him. A priest! I have enjoyed debating with this man for years, so I knew we were not on the same page politically. Still, I have read what he writes and learned from him many times over the past few years. Now he wants me to close the door.

He did not say, if you are trolling my page looking for a fight, take it somewhere else. (I can respect that.) He did not say he wants to control the message on his page and so he would not allow comments in opposition. (I would disagree, but understand that.) He said go away. If you disagree, you do not need to listen. I do not need to listen. We do not need to communicate.

I think we do need to communicate, and now more than ever. I think that we need to listen with generosity and love, especially where there is disagreement. I think that the truth can survive a good beating, and it suffers without examination. I think that perspectives matter and choosing to try and understand where another person is coming from is a way of choosing love.

I know it is bad. Not everyone likes debate. That is fine. I don't think everyone has to wade waist deep in the big muddy. But please stop slamming doors.

Saturday, July 16, 2016

Only one in a hundred will share this

Jesus is watching. Only one in ten people will have the courage to share this. I BELIEVE in AnGeLS and I BeLIevE In GoD. Type "I Believe" in the comments and prepare to be AMAZED by the blessings God will pour out on you.

God wants to cure this CHILD. Help us get to a million likes.

Like=1 prayer
Share=100 prayers
Comment "AMEN"= 1000 prayers
She deserves your best. A minute of your time could be the miracle she needs.

I KNOW it is an unpopular opinion in this PC world, but I love AMERICA and I support AMERICAN TROOPS! Did you know only one person in 1000 will share this? That is real COURAGE!

Cancer WANTS to beat this freespirit. God is Stronger. Type AMEN and SHARE!

Please. Stop.

Stop binding God's will to popularity. Stop pretending that it is somehow courageous to share pictures of kids. Stop reducing God's power. Stop.

Stop trivializing real courage and heroism by giving yourself credit for being proud of courageous heroes.

Stop enabling clickbait monsters who steal children's photos to drive up their traffic.

I am begging you. I know most people who are sharing these things have the very best of intentions. I am not accusing. But please consider, who is benefiting and who is it hurting?

Does it help the kids? It might be argued that spreading these things around increases prayer. It might. But you see, it isn't. Perhaps there are a select few truly pious social media missionaries who pray every time they see a post asking for prayer. But most of us don't. We scroll right by. Do you actually think, as many of these posts claim, that liking or sharing these things is prayer? Or is many prayers? That feels vaguely blasphemous and idolatrous to me.

Does it help the meme makers? Ah-ha! Indeed it does. Often these pages are scammers. It seems innocent enough, but these pages are collecting fans for cash. They grow by using content which will be shared. You share, you like, you comment. All these things promote their visibility. When they have grown nice and big they can either sell the page to a marketer or they can use the page to sell other scams. Money is a motivator.

Who does it hurt? It hurts whoever falls for the scams, and lets not kid ourselves. That is a lot of people and it could be anyone.

It can hurt families. I know of one family whose had a child whose picture was used for this spammy, scammy nonsense. It was a cute kid and a pretty popular meme. The trouble? This child had died. That was painful.

It hurts the subject of the picture. Their image is stolen and pimped for money. Even if they never know, that is not OK.

Does it help God? I am not sure I know what would mean. It certainly doesn't help his cause. It is, at best, a poor attempt by lazy missionaries. Often the wording itself is against scripture, which has a thing or two to say about boasting. Hint: it is not good. "None of my friends will share this, but I am proud of my God..." Puh-lease.

The popularity of posts that promise God's blessings if you like and share them is honestly sickening. Who is that God? That doesn't sound like the God I know.

God does ask us to pray for each other. He doesn't need our help. He already knows who needs what. He loves the person you are praying for and he already heard their need. But he told us to pray for each other and he promises he will hear and answer. It is valid to ask why. Why does an all-knowing, loving, omnipotent God ask me to pray for people?

We invite God. We pray for healing. We pray for conversion. We pray for protection. We pray for peace. When we intercede we are doing two important things: we are talking to God and we are forming our own relationship with the loving Father who is listening. "Father, you are dear to me and I am dear to you. I need you." Recognizing your limits and placing your trust in God is freeing. It is humbling, but it is also empowering to engage with the King of Kings.

Of course, social media can be a missionary field. Any interaction with other people can be. And I think it is a perfectly reasonable place to solicit prayer support. I know I have depended on my online village for support more often than I care to consider. I am not asking anyone to keep their faith or their patriotism or their pictures off the internet.

Use your judgement. Good people don't use God or kids or disabled people as marketing tools. Don't lend your social media presence to people who do.


Friday, July 15, 2016

Dear Anxiety

Dear Anxiety,

You haven't beaten me. You beat me up, again and again and again. You kick me when I am down and you tell me terrible lies. You warn me that I will never win. I can't. I should just stay down. You scream at me and make me feel small and helpless. You are a textbook bully.

But you haven't beaten me. 

I am learning to recognize your lies. Remember when you told me that I would never be better? I am better. Remember when you told me that you weren't real? You are. 

When you first showed up and told me I was dying, I believed you. You didn't even need a cause of death. You just showed up and announced that it was all over. You were taunting me in front of my kids. I put on a face for them, but I was cowering. 

We're old acquaintances, but still when you came charging in an running things I did not recognize you. The old anxiety was small and subservient. The old anxiety was timid. The old anxiety would sometimes spark and fan fear into flames, which leapt about painfully but with minimal destruction. When you charged in like you owned the place I did not recognize you and even now I wonder if you aren't a different player who shares a name.

You screamed at me. "Be afraid. Be afraid of death. Be afraid of pain. Be afraid for your kids. Be afraid for you husband. Be afraid for you parents and your siblings and everyone you have ever loved."

When I confronted each individual fear, you simply invented more and screamed louder.

"Don't you know about...?"

Until I didn't know how to argue. Until you were the only voice I could hear. Until your unhinged taunts outgrew my mind. I couldn't sleep. I couldn't get out of bed. I tried to cover you with mind-numbing TV, but you just laughed. I was shaking and vomiting. Remember that?

You're a mean SOB. But you didn't beat me.

You shamed me. You told me I was weak if I needed help. Surely I was strong enough to send you away on my own.

But it isn't weakness to ask for help. Asking for help isn't admitting defeat. I needed help. I needed control of my mind.

With my doctor, I stood up to you. We didn't chase you off the playground; that's is your bully tactic. We just cornered you. We took your power away.

You can stay, but you are not in charge anymore. You can even have a job. Your job is to help me find problems so I can address them before they grow. But I don't trust you anymore, and so for now we are keeping you under lock and key. Two tiny pills every night before bed.

Anxiety, I am winning. You don't own me. And I am not ashamed of the help I needed and continue to need. I am only ashamed that I ever believed your lies and that I ever allowed you to boss me around. 

What if Love is Impossible?

Another day, another horrible story. People are growing numb and it is understandable. It is painful to keep on caring. Is it even possible to keep on loving?

Love your neighbor. 
Who is my neighbor? 
The one who is suffering. 

It isn't written that way and there are so many wonderful details in the story. But the one on top, the most basic is a pretty direct answer to a pretty direct question. Love. 

But it is impossible. Completely impossible. 

I have been in a battle with anxiety. That is a subject for another post. But a piece of what is on my mind is fragility. Because I was having panic attacks daily, often without an obvious trigger, for a time I was very guarded. I could not listen to good music because literally any intense emotional response was likely to trigger a panic attack. I am a person who, perfectly healthy, cries watching the news. I had to stop watching the news. I had to protect myself. I had to be able to cope with my life. I had to be able to get out of bed. I had to. 

Not everyone is battling with anxiety, but everyone has a threshold. Confronting mine is just the detail of my story which put me on this twisty mind path. There is more than enough suffering to meet and exceed anyone's capacity for empathy. It is impossible to love in the way we are commanded. 

Love with compassion and hope. Love which tends the needs of the suffering. Love which is a balm. Love which heals and confronts. 

I want to know how to respond, with love, to the terrorist attacks. I want to know how to respond to racial injustice. I want to welcome immigrants. I want to love. 

Lord, I am listening. I hear you calling me, but I can't. I just can't. I am broken and weak. I am scarred and scared. I want to love, but it hurts and I am afraid. I don't have it in me.  
Dear one, I am in you. I am with you. And nothing is impossible for me. 

“For human beings this is impossible, but for God all things are possible.” Matthew 19:26

We are supposed to love. Pain or even impossibility are not an excuse.

Miracles happen. Peter walked on water. Jesus fed thousands with a Dagwood sandwich. The dead rise. Illnesses are inexplicably healed. People are protected. It happens. Miracles happen. It is a pleasant conceit that He is up in the sky waiting for us to ask for whatever we think we want, and with a twinkle and a wave, we get it. God as Fairy Godmother. But that is not how He works, as any honest person can attest.

Miracles are not universal. Not everyone who needs a miracle gets one. People die terribly. People suffer. You cannot tell the history of the Church and skip over the martyrs. And you wouldn't want to.

Miracles show us that God's power is not bound. He does not need us to be able to explain or even comprehend His actions. Miracles teach us that nothing is impossible for God. They are not an excuse to duck our duties to the people around us; miracles are an object lesson in God's power.

Before I can begin to face questions about what to do, I have to care. How do I keep on caring? How can I keep on loving? How can I avoid numbness? How can I let myself notice and feel for people who continue to suffer? How can I help? I can't. But nothing is impossible for God. And He is with me.

Thursday, April 28, 2016

Can I hate the syndrome?

This morning my friend's son was sick. It is one of those flu-bug things which is really no big deal to most kids, but for her son it is serious. Fever means seizure risks. "Some days I really hate [my son's] syndrome."

I get it. 

I hate that my daughter will need so much surgery. I hate that she has had so much surgery. I hate that my kids are all familiar with hospitals and ambulances. I hate that she cannot call out to me or come to me in the middle of the night if she has a nightmare or if she is sick or just afraid. I hate that going to the park or anywhere means steeling for the possibility of unfriendly encounters. I hate that we have to plan around wheelchair accessibility and I hate how admitting how much of a limitation that is. I hate that I can't just hire a babysitter and go out. I hate that everything is harder for her. Everything. Even breathing. 

Some days, I want to hate Apert syndrome. 

We don't like to say that, as parents. It feels like a betrayal. 

It isn't fair. You are allowed to hate diseases and injuries. You can hate cancer. You can hate broken bones. You can hate pneumonia or diabetes. But syndromes are different. It is easy to think of it as something that happened to my kid. Something she didn't deserve, like a disease. But it isn't. 

Apert syndrome is not all of who she is, but it is part of who she is. It is literally written into her DNA. And some days, it is hard to love that part because that part hurts. 

But it isn't all bad. You will never meet a happier kid than my Sarah. I love her wide open eyes. I love her creativity, as she figures out alternatives. I love her moxie. I love her perseverance. I love her sweetness and her joy. When people are unhappy around her, she blows them kisses. I love her huge contagious smile. 

My heart is softer and that can hurt, but it is good. My other kids are more likely to be empathetic and dependable, or so the research on sibling of kids with disabilities says. 

Sarah can't walk or talk. We took her to an indoor playground today. She doesn't want help, so she was scooting around on her own. She scooted right up to kids, without regard for age, gender, or race, and signed friend. The kids didn't generally understand, but many of them smiled anyway so she was communicating effectively. That is really cool. She is really cool.

Apert syndrome had a hand in some of that. Sarah did all of that. 

Everyone has those parts. The parts that make your life a little bit harder. The parts that hurt sometimes. The parts that shape you and your interaction with the world. In some ways, these are the parts that make you you. 

Thursday, April 21, 2016

What I need you to know

Better is not really better yet. I have been taking my medicine for about a week. I have had good days and bad days, which is the same as it ever was. Yesterday was a bad day. Mostly I am tired. I have to talk to the doctor about that. I heard that it was normal and it would pass and I hope that is true. 

Here is what I need you to know. 

1. Anxiety is not the same as fear. The problem is that my brain is sending fear signals all the time, even when nothing is wrong. When something actually is wrong, I go from high alert to overdrive. My body cannot handle it. 

2. I am getting better. I need you to know that I am getting better. I am getting treatment because I believe I can get better and I need you to believe it too. Treatable means bearable. Treatable is the lifeline. 

3. I am trying. Even when you can't tell. 

4. It is in my head, but please don't say "just." Just trivializes it. It is in my head. You know what else is in my head? All my thoughts. Everything starts there. The decision to put one foot in front of the other happens in my head. In my head means it affects everything. 

5.I am still me. The same me. I know you are having trouble seeing me and maybe you are afraid. I am. But I am still here. 

6. This diagnosis is not a new thing, it is just naming the old thing in a way which makes it treatable. This is progress. 

This is all still new and I have a lot to learn. And I am learning. 

Monday, April 11, 2016

Chasing Joy

I don't feel like the same person who started this blog. I don't feel joyful. I feel a lot of things, but joy is not one of them. I am searching for me.

I love this meditation from the Little Flowers of St. Francis and I come back to it often. It was my favorite when I first read it as a teenager. It was the subject of my senior essay at St. John's college. It was the first thing I wrote about in this blog. Joy, perfect joy, is in the cross.

This is the antidote for the dissonant bells and clattering noise of pop-theology. Everything is not going to be OK all the time. God didn't promise that. He promised a cross. The sheer arrogance of some theologies, bubbling over with promises of wealth and happiness (as these things must indeed be related) is offensive. But let's not chase that rabbit trail today.

Today I want to talk about wellness.

I want to share something which won't surprise you: someone you know and love has been treated for anxiety or depression. I am not outing anyone. People can tell their own stories, or not, as they like. I am telling mine. Mine is still in pieces and I am only beginning to put them together. I want to let the light and fresh air in. I want to talk about it. I want to dispel a few clouds.

I have been dealing with anxiety and maybe depression. It has been getting worse for some time and this weekend was particularly bad. I had a panic attack. It was not the first, but it was the worst. I was scared. I was throwing up. I was shaking. It was a long few days of recovery, even when the panic was over.

I realized that my baseline is not acceptable. This should have been obvious. For months, I could not listen to music which affected me emotionally (so...um...no good music), because it might trigger a panic attack. I could not exert myself physically, because if my heart started beating too fast I would have a panic attack. I could not watch TV or movies which were actually dramatically interesting, because it might trigger a panic attack. Most startling to those that know me best: I could not engage in argument. Especially political argument. Heart racing. Nausea. I walked out of one argument literally seeing stars- my head was spinning. (In my defense: Trump.)

I've had trouble describing what is happening sometimes. Nerves. Or Anxiety. Fear. No matter what word I used, people want to know what the object is. Why am I anxious? What am I afraid of? Sometimes there is a rational answer. Sometimes there is an answer, but it isn't rational. Sometimes there is no answer. You know the physical feeling you get when you are scared? That is how I feel, but with no object. There is no fear for you to dispel. It isn't a feeling. I mean, it is. It is a physical feeling. The one associated with fear- you know- the pit in your stomach, body shaking, coldness... but I am not afraid. That is the wrong word.

Want to laugh? During Lent, I sat down with my family to watch the Prince of Egypt. Remember that animated telling of the Moses story? I had to leave in the middle of the movie because I couldn't breathe. THEY WERE KILLING THE BABIES!

For all of this, I have just been adjusting. I walked away from the children's movie I couldn't handle and calmed down alone in my room. I thought I was fine. Because I could calm down.

But I am not fine. I am hiding from life. And you cannot hide forever. This weekend knocked some sense into me.

So, I made a long overdue appointment with my doctor and I asked for prayers on facebook. I shared a small bit of my story in a closed group people who have Apert syndrome and their families. I said I am suffering from anxiety and maybe depression. I expected comforting words of support. I expected promises of prayer. I did not expect the deluge of people telling me that they had been through this too. Some were public. Some sent me private messages. Some people sent detailed stories. It wasn't just support from people who loved me. It was solidarity. And it wasn't just in the special needs network, it was everywhere. Friends from everywhere I have ever made friends.

Someone you know has been treated.

And some of them felt ashamed.

I heard from people who thought it was a weakness to need medication. I heard from people who thought prayer should have made it all better. These are the common and devastating lies. This is the stigma which keeps people away from getting help.

I still love The Little Flowers, and specifically that meditation on perfect joy. As Christians we are called to take up our cross. Sometimes that means coping with unavoidable difficulty. But sometimes taking up your cross means facing the difficulty head on. I do not know what God's plan is, but I know that if he gives me the tools to take care of something and I leave it to him anyway, that's on me. Using tools is not a lack of faith or a weakness.

I do not yet know what the path to wellness looks like for me. This is terribly unfamiliar and I am scared. I have been saying, for probably a year, that even if I won't do it for me, I should do it for my family. I am not a good mom. I am not a good wife. I am not a good friend. I can fake it as well as anyone, I guess, but no one who lives with me is fooled. I need help. I am confused, but I am not ashamed. And I am going to get better.