Monday, June 23, 2014

God, Disability, and the Men's Restroom

In seminary, we are encouraged as students to explore grandiose ideas. We theorize, hypothesize and pose grand questions (and possible answers) about God, trying to find a language which communicates our God-thoughts and God-experiences.  We study and write and dialogue (argue), sometimes spending hours trying to find a clear, concise, and even beautiful way to communicate this or that stance in a handful of sentences.  It can be grueling work, constructing a theological argument.  But, for as many times as I have measured my success against the grade I receive on an assignment, that's not really the point.  The real question is:

When the you-know-what hits the fan, does your theology work?

Last summer, my then new-found theology of disability slammed into the reality of my life as a caregiver in spectacular fashion.  After a full morning of summer school, I was sitting at work attempting to be productive with the few brain cells I had left, and I get a call.  It's Justin. He's hysterical.  I literally could not understand him because he was so panicked.  I finally figured out that he's at work and he's in the bathroom.  That's about all I needed to know. I dropped everything at work and left. I went home to get supplies, and on the way I literally caught every stop light possible.With tears running down my face, I found myself yelling at inanimate objects. I was emotionally done. Not only was I pushing my own stress back, but I was also trying to manage Justin's panic.

I'm tired of having to drop everything.  It's not fair.  No one else I know has to do this kind of thing on such a regular basis.  Why, God, why?!?!  

Then, I started playing the blame game.  If Justin ate this and not that, this wouldn't happen.  If the doctor would only give Justin something to help, this wouldn't happen.  If, if, if...  My anger welled up at all of these people who have made this hard on me.  And then, I remembered something that has come out of my own mouth again and again:

We need to stop addressing disability as an issue of health or un-health. Sometimes our bodies don't do what we want them to. This doesn't change our state before God, and it's time we stopped letting it change our level of respect and inclusion in life and in the church.

The anger eased, the panic subsided, and the work began...
Since that encounter, which honestly was nothing new then and is nothing new now, I've faced many instances where what I say about God and disability comes to the test in real life situations.  I've heard great "thinkers" think and speak very badly about disability theology to a room of disabled persons and their caregivers.  I've seen supposed leaders look down to my husband because of the wheelchair.  I've lamented as it seems we'll never get ahead, and I've laughed in order not to cry when people say stupid and ridiculous things in attempts to be "helpful."  I have wondered where God is, and I have seen God at work. In all this, even when it feels we are most alone, I do not hesitate to affirm that "God is with us, we are not alone."  This is the core of our engagement with God and disability, the basic confession from which all else comes.  This is the foundation from which I can proclaim God as "my rock and my fortress, my God in whom I trust."

You know, when I look back at last summer's adventure in the men's restroom, I will never forget what happened as I started the work of cleaning and caring.  A man came into the men's restroom, saw me going back and forth from a sink to the stall, and proceeded to go report me to the receptionist.  In less than a minute, I hear a loud and very disgruntled voice at the door, "Ma'am, don't you know this is a men's restroom? You're not supposed to be in there."  Without the careful thought that usually attends my words, out of my mouth comes in an equally loud and forceful tone, "My husband is in a wheelchair. He needs me.  I'll get us out of here as soon as I can."  It was a moment of claiming a voice at the table for me.  Granted, that's still something I have to work on, but I remember that as one of the first times I did not apologize to someone else for their misunderstanding of my situation.  Hear that again--I did not apologize to someone else because they misunderstood my (unusual) situation.  If God is with us, if God is in the midst of disability, then I do not have to apologize for the existence or seeming strangeness of my disabled family.  Confusion will happen, mistakes will be made on all sides and by all parties, and misunderstanding is inevitable.  But, we are all valued human beings made whole and good in God, disabled and nondisabled alike, and sometimes we have to let our theology claim that for us even in the strange mundanity of a men's restroom.

Sunday, June 22, 2014

I Don't Want To: A Lament

God, I don't want to have to wade through seas of human pain in order to extend a hand, to invite people to a new way.

I don't want to slog through destructive apathy to wake people up to Your work of transformation, making us into a people of God who give dignity, respect and voice to all.

I don't want to witness people breaking and feel helpless to do anything at all.

I don't want to feel like giving up because it's all too much.

I don't want to love Your way if that means I hurt when another hurts and feel crushed when another is crushed, because both happen all too often.

I don't want to cry in front of another, friend or stranger, because there's nothing else I can do.

I don't want to be silent when the silence is full of the restless pain for which we have no words.

I don't want it, not any of it.

But God, if it is Your will, I will do it.

And don't leave me alone, God, or I will falter, and I will never know the goodness of participating in Your New Creation.

Hold me up.  Strengthen me. Send your angels--heavenly and blessedly earthly--to come alongside and encourage me.

I am useless in my "I don't wants" without You, but in Your presence is courage and strength and blessed peace and rest in the face of abuse, pain, and hopelessness.

Guide me, O Thou Great Jehovah.  Amen.

Friday, January 10, 2014

When Did You Realize You Are a Caregiver?

Today I received an e-mail from the Caregiver Action Network asking caregivers to share their stories for their website, which is all about networking caregivers, caregiver advocacy, and tools for caregiving.  I usually read these e-mails and then trash them, but today one of the questions they asked really stuck with me and I decided to actually write them back.  So, here's the story about when I realized I was a family caregiver:

About 7 1/2 years ago, I started dating the man that would become my husband just two years later.  Justin was born with cerebral palsy and has been in a wheelchair since the age of 4.  From the beginning of our first date, I started participating in caregiving activities, even if that's not how I would have identified them at the time.  Before we could go to dinner, I had to learn how to operate Justin's RampVan.  When Justin ordered pasta at dinner (which we still can't believe he did!), I had to cut it up to make it easier for him to eat.  But even then, I didn't identify these actions as being something out of the ordinary.  To me, this was what getting to know Justin entailed.  

After we were engaged 11 months later, I started working with Justin's parents to learn how to take care of Justin--how to give him a shower, what to expect from doctor's appointments, Justin's medical history, etc.  Now, at this point, I was well aware that this was not the same process my other engaged and newly married friends went through in the months leading up to their marriage.  But, again, I didn't think of myself as a caregiver.  For me, this was how I learned ways to care for and love Justin.

So, when asked the question, "Do you remember the moment you realized you became a family caregiver?" I can answer with absolute certainty that I do, but it's not when people expect. After we got married, Justin and I lived in a shoebox of an apartment, not an easy thing to do with a motorized wheelchair, but we managed pretty well.  One night, as I was laying awake unable to sleep, I heard a noise outside.  It turned out to be some unidentified animal in the bushes, but that's beside the point.  It was in that moment that my whole body tensed to hear what was happening and I quickly started calculating what I was going to do if someone tried to break in, it hit me.  Our protection as a family was up to me.  If I didn't know what I was going to do, if I wasn't aware of how to handle an emergency, there wasn't a lot Justin could do without me in those situations.  

As I have reflected on this occurrence over the years, it always strikes me how strange that this was the role my dad usually played in our family, and in realizing this role fell on me in my own family, I finally saw myself as a caregiver.  I didn't receive this revelation with bitterness or upset, but it was a turning point.  Ever so slowly, I began to name the other things I did as a caregiver, recognizing them for what they were and no longer feeling like I had to hide them from people who didn't understand.  It has taken a while and I am still in process.  But this moment in the middle of the night over 5 years ago began my process of giving a name to caring for my husband.  It gave a name to all the times I struggle physically and emotionally with all that caregiving requires.  If I could have known anything as a blushing bride of 21 years, I would have wanted someone to tell me it was ok to name caregiving, to own it for what it is, good and bad.  I could have guessed at that time that caregiving would be hard, though definitely not how hard it might be.  But, the freedom that comes with owning all aspects of caregiving, with naming them for ourselves and others in love and acceptance is a gift I needed to receive and I try to give now to the very best of my ability.