Saturday, September 17, 2016

Laundry and Sisyphus

My phone was dying, so I went upstairs to plug it into the last undamaged phone charger in the house. I found my charger bathing in a nice, cool glass of water. Not floating or toe dipping, but fully submerged.

My logic is not always perfect. I thought to myself that if my phone was going to die, I had better get my important phone calls out of the way quickly! Sarah has gone into SVT three times in the past week. The doctor wants to go ahead with the ablation procedure which we have thus far been successfully postponing with medicine. He also increased her dose of medicine, so it did not feel urgent. Still, I have to schedule it; surgeons are always busy for months so we have to get on the calendar asap.  I called his nurse. 

"Wednesday," she says. 

Wait. What? Wednesday? As in less than a week away Wednesday? I know he wanted it done, but that soon? 

She hopped off the phone to double-check that yes, the surgeon wanted Sarah in that soon and indeed he did. Wednesday. Apparently, this was a drop-everything-and-handle-this moment, not a put-it-on-the-overfull-calendar moment. So, phone battery low, I didn't argue. Heart surgeon wants to do ths procedure now? We will do this procedure now. I am on it. 

Except that I am not, really. This will be the frst time Sarah has had something serious done since my anxiety took its ugly consuming form. Will I be able to handle it? All else being equal, this is a pretty good procedure to jump back in with. (Leave my preposition alone.  I like it there.) It is a common procedure. It is not even called a surgery. They go in through the femoral artery and thread up to the heart. They try to induce the SVT and then they watch and see what is misfiring. Then they fix it. Still, it is uner general anethesia and they are messing with her heart. 

I decided that the task of reclaiming some bit of order in my home would go a long way toward keeping my brain from going haywire. So, I sorted six tons (as measured by my super-woman biceps) of paperwork and admired the sheer volume of medical mail we get. Non-medical stuff often gets lost in the shuffle. For instance, I found the invitation to the wedding we attended last week! Yay! A little late. 

Then I got out the vaccum. I like my vaccuum. It is brand new. About a decade ago we were given a used Hoover when someone else replaced it with something better. That has been our vacuum since then and it has served us well. But for the past several months, it has needed a new belt about once a month. This is an easy fix, so we dealt with it until my husband and I admitted to one another that in our heart of hearts, we both secretly really wanted to replace it. So, we did not replace the belt this time, we replaced the vacuum. We bought a brand new, well-reviewed Shark on Amazon. Oh, I was excited. Why are vacuums denigrated as gifts? What fun! It is all shiny and new and functional! It is light! I can carry it upstairs without breaking our my not-really-real super-woman biceps. Man,  I like ths vacuum. A week in, everthing is awesome. Not Lego awesome, but nearly. As soon as we have established the awesomeness of our new vacuum, I popped the old one on a freecycle-like page with full disclosure about its age and difficultes. It was snapped up in under five minutes. Out with the old!

 Back to yesterday. Yesterday as I am vacumming to save my sanity with my shiny new vacuum when the darn thing turns off. No excuse. No warning. No broken belt. It just turns off. A small voice inside me cries out, "That is what you get for trying to save your sanity with house chores!" But I silence the voice. Appliances are supposed to work. Vacuuming is supposed to be the uninteresting but predictable and easy part of the day.  

By now, Amazon same-day-delivery has delivered a brand new charger. Thank you Amazon, for always being there for me. So my phone is charging again. I can get back to the phone calls. I am a little hesitant because I hate getting on the phone and the last time  I attempted this chore, it grew. Freaking cardiologist. 

Not really. He is awesome. Kind of a rock star, actually, in his way. But the one phone call to schedule the one had thing turned into many phone calls to cancel and reschedule many things. I did it. I called my therapist and rescheduled our first appointment again. (Third time. I bet she thinks I am chickening out.) I called my dentist and rescheduled my appointment and my husbands, since they were back to back. I rescheduled Becca's dentist appointment. I canceled everything on Wednesday. Then, even though it is supposed to be outpatient, I cancelled everything on Thursday too. There is a chance that they will want to monitor Sarah overnight after the procedure, and I know my kid. So, I am kind of planning to spend a night in the hospital. 

The I get back to the order reclamation. Laundry is a good choice. No matter how many times you do it, it still remains to be done. Laundry will save my sanity. 

Fresh, clean, damp clothes pile into my dryer and.... the dryer will not turn on. The appliance gods are toying with me, a mere mortal with a sisyphean task. 

Undeterred by their spite, I decided not to touch any more appliances of any kind. I choose a chore which does not require them. I accomplished a task. A real task. Becca needed a dresser. I had one that was mostly full of clothing I don't wear. I don't mind if things are not always put away, but I cannot stand it when there is no away to put them. Becca and Lily have been sharing a dresser and it is not big enough for two people. I emptied, moved and refilled a dresser. All by myself. 

Now, Bob Marley is happening in my head. Every little thing is gonna be alright. Brains are unpredictable creatures. I guess appliances are too. 

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.