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 ( 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.