Tuesday, October 21, 2014

Dread


It's almost here. The appointment I've been needing and looking forward to, yet at the same dreading with every fiber of my being. The appointment that will hopefully put me on the path to solving another piece of my health puzzle, but which could also come with life-changing news. I finally saw a neurologist to figure out why I have numbness and tingling in my arms and legs, why I have a constant stabbing headache, why my neck hurts all the time, and why my legs go out from under me without warning. I had extensive x-rays to help determine the amount of fusions going on in my neck and lower back due to ankylosing spondylitis. Now I have an appointment with my rheumatologist to put it all together, to figure out if he has a better picture of what's going on, and to find out how we're going to proceed.

I want answers. Really, I do. But a sense of dread has come over me since the appointment showed up on my calendar. The what ifs are taking over the rational just-wait-and-see-there's-no-use-in-worrying part of my brain. I'd love to be able to turn it off., but nevertheless, the wait of it is crushing me. Suddenly I'm exhausted. Feeling like I need something, but I don't know what that thing is. Feeling alone.

It's strange how confident I am that I will be able to come to terms with whatever the diagnosis, that God is with me through all of this, that I am supported by friends and family - yet how much fear I'm experiencing in waiting for answers. My faith is battling my OCD and it's driving me crazy.

Faith: God will get me through this.
OCD: But what if your entire life is going to change with just a few words from the doctor?
Faith: Then I'll take deep breaths, pray, cry, be said, be angry, be thankful, and move forward knowing that I can get through this.
OCD: But what if you have to stop helping out other families and can no longer do the things that get you out of bed every day?
Faith: Then I will find other things I can do.
OCD: What if you'll end up paralyzed for the rest of your life?
Faith: Then I'll adjust. And what if there's nothing to worry about at all?
OCD: What if...what if ... what if...
Faith: Deep breaths, prayer, take comfort in God's Word and God's grace...
OCD: What if...what if... what if!!!???!!!
Faith: Don't worry. God is with you.


I can't turn it off. I sleep for a couple hours then wake up, the battle raging in my mind all night. I go through my days needing to constantly be doing something as to ignore dread's grasp on my being. I pray. And pray. And pray. Some days are better than others. 

Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.   Matthew 6:34
And so each day I count my blessings, recognizing all the good that God is doing in my life. As much as my OCD focuses on the what-ifs, I try to focus on the then God wills. 
 

Monday, October 6, 2014

Best Intentions


An amazing woman I know, in a facebook group she set up as a landing place for parents doing their best to parent gently while coping with the many manifestations of post-traumatic stress disorder, started something that has turned into a daily ritual for me, and has been life-changing. It's so simple, yet so critical. 

First, two simple words help center me for the day ahead: I Intend...

Today, I Intend: To live in the moment, To be open to Joy, to make it the best birthday party ever for my son by encouraging him to lead the way through the Peabody Museum of Natural History with his friends and releasing any expectations I might hold of what our time there should look like. To be gentle with myself as I navigate the museum in wheelchair or on crutches, listening to my body's limitations, but not letting those limitations affect my mood. 
Today, I Intend: To center myself in the Water and the Word. To tend to the earth. To be a good steward with my time, talents, and possessions. To have patience, to act in kindness, and to be gentle with myself and others.
Today, I Intend: To treat myself gently. To not push myself to do more than I should. To let the house and the kids be messy. To take my pain medication, use my mobility devices, and to pray instead of worry about my physical future. 
Today, I Intend: To balance much needed rest with much needed housework. To be patient with moody children and children working through sensory issues. To be gentle with myself as I deal with extreme pain.
Today, I Intend: To be patient with my children and myself. To let go of expectations for the day and just let it happen. To listen more than I speak, to give more than I take, and to say yes more than I say no. 
This simple practice helps me be mindful of how I want to proceed through my day, helps me keep myself in check, and is easy to go back to throughout the day to remind myself how I wish to proceed.

Then, in the evening, three words fill my being with gratitude for life's blessings ... I'm Thankful For ... 

Today I am thankful for amazing friends whom I don't see nearly enough. Friends who ask me, and REALLY want to know, how I'm feeling, how i"m doing, and are concerned that I have too much on my plate. 
I am thankful for a wonderful outing to the museum, for lots of smiles and excitement, for crutches to get me around, for having a vehicle my friend could borrow in an emergency, and for lots of good things to look forward to this week. 
Today, I'm thankful for clean water, nourishing food, shelter, warmth, and family. I'm thankful for each step, each breath, each tear, and each laugh. I'm thankful for community, for music, for unexpected conversations, and for giving my time to others.
I have to admit that I more often than not am to tired or ill to post my gratitude, but every night share it with my family as we share our highs and lows of the day with each other. 

Composing my intentions at the start of the day, and acknowledging life's blessings at the end of the day have greatly improved my life, my outlook, and my mood. This ritual has helped me navigate daily doses of Angry, increased pain, and decreased ability to do many things in life. I intend to live life in joy and carry gratitude with me always. 

Thanks, Rose! 

Friday, October 3, 2014

Health-O-Meter

I wish there was a Health-O-Meter that could let me know what my health is going to be on any given day. Life would be so much easier! You see, on days like today, I never know when my body is going to say enough! It could be that I get up, showered, and dressed with minimal problems. I could even get to the grocery store and do a little shopping. Or maybe a lot of shopping. Perhaps I'll start feeling ill just minutes after arriving at the store, or halfway through shopping, or when I get to my car. Maybe I'll need help getting my groceries in the car, or maybe I'll be able to do it myself. I may get the groceries from the car to the house, or need someone else to do it. Then there's putting away the groceries. Occasionally I'm well enough to accomplish that task immediately upon returning from the store. Mostly I get the fridge/freezer stuff put away and then call it a day ... or a week.

Perhaps I have an after-the-fact Health-O-Meter...


Incredibly Ill: Didn't even consider going to the grocery store even though all we have in the house is a giant head of cabbage and an overabundance of mozzarella cheese.


Very Ill: Thought about going to the grocery store. Made a list, even. But then decided otherwise once my feet hit the floor.


Just Plain Ill: Made a grocery list, coordinated it with coupons. Got to the store, and halfway through shopping, and realized there was no way it was all getting done in one trip. Checked out with what I had and called it a day.


Slightly Ill: Grocery list, coupons, and a full shopping trip accomplished. Freezer and fridge stuff put away. Perhaps if my family members trip over the rest of the groceries strewn across the kitchen floor, they'll put them away. But most likely not.


Feeling OK: Grocery trip with coupons completed, All groceries put away. 


Feeling Good: Groceries put away AND beef divided and frozen in 1 lb. bags; chicken breasts marinated and frozen, some cut up and marinated for kabobs, 


Feeling Great: All of the above, and the fridge cleaned and pantry organized before shopping.


So ... if you should happen to arrive at my house and find groceries everywhere - beware! I'm not feeling well. If the kids are eating cabbage pizzas, please come back with a bag of apples and a jar of peanut butter ... and don't mind me while I take a nap. 


Wednesday, October 1, 2014

Making Sense of Worship


My feet are cold. People are shuffling their feet, flipping hymnal pages, sniffling, whispering, rifling through bags and purses, all while the Pastor's voice echoes off the walls. The flowers smell strange today and there's another scent I can't figure out - maybe some kind of cleaner, or someone's perfume. It's cool in here, but the light above my head is producing too much heat. I think I might need to change seats, but my only options are next to my sister or a stranger. Perhaps I'll stay put. Why do we have to sit in front? All those people behind me and I don't know what they're doing. It's quite distracting. Just to get out I have to maneuver through a sea of them. And there's a high pitched sound coming from somewhere - the sound system or the emergency light things, maybe? Now the vibrations of the organ are rattling my chest and my eardrums. It's so loud! So many different voices assaulting my ears all at once. Whew. Silence. Well, not really silence. More shuffling and sniffling and whispering. Noise, quiet, noise, quiet, stand up, sit down, stand up, sit down, speaking, singing, flipping pages, sitting still, being quiet, more noise again. I almost forgot - it's close to the Sharing of the Peace. I need to get out of here before all those people want to, no...expect to, touch me. At least I'm used to the taste of Communion now and can get a drink afterwards if I need to. Worship is almost over. I hope I can get to the door before too many people get up. I need to breathe in the empty hallway before everyone descends on Coffee Hour. I need to get and eat my food so I can escape to the van and sit alone for a while. 





I'm so glad we're sitting in the front row. I love to see all the stuff that's going on - the flickering of the candles, the banners and the cross. It's fun to see Pastor's face and hear him clearly as he gives the sermon. Look at all the colors of the flowers. I can smell them from here and it's great. I wonder what they feel like. Look at the faces behind me - a sea of colors and movement and noise. Aww, that song wasn't very long. I love the rumbling of the low notes. Argh, it's too quiet now. Maybe I'll translate the bulletin into code or draw on it or maybe I can make a stamp by drawing something on my hand and trying to stamp it on the bulletin. Oooh, I just thought of something I need to tell Mama. Oops, I forgot to use my quiet voice. It's too quiet in here. I'm supposed to sit still, but my feet won't stop moving. I'm thirsty. This sermon is long. Do people really think God is doing it all wrong sometimes? God's grace is a mystery? I love mysteries. I need to tell Mama about that episode of Scooby Doo where ... ack! I forgot my quiet voice again. And about not talking during the sermon. It's so hard to be quiet when it's so quiet in here. I must have been sitting still for an hour. I just can't keep my legs still. Mama said it's been eight minutes not an hour. Can't, keep. my. feet. still. I need a squeeze now before I launch myself. Must get hugged tight if I'm going to make it through the sermon. Oh, good, it's over. Another song. I need a drink and to walk and to spin my arms around and around until they're too tired. I'll ask Mama to take me. I feel better now. Time to share the peace. I need to find Mrs. Finer and Ellie and Gramma ... and ... and ... Time to put the money in the plate. That means it's almost Communion. I'm so glad we're sitting in front so we can get to go first. More things to say and songs to sing and I can stand up and move my feet and stretch and get some of this energy out and more energy in. 




Children and adults on the autism spectrum or with other special needs experience worship in a very different way than the typical population. Some are overwhelmed with the sights, sounds, smells, vibrations, and activity at worship. Others feel overwhelmed trying their best to be still and quiet. Some experience both at the same time. 

What can we do to help? Don't judge autistic people when they forget to use their quiet voice. Or when they get up and leave in the middle of worship. Or when they curl up in a ball and ignore you during the Sharing of the Peace. They are most likely not purposely being disruptive or disrespectful. They are more likely overwhelmed ... or underwhelmed ... whichever the case may be. They are definitely meeting their needs. 

An autistic child once told me that sitting through worship is sometimes like trying to thread a needle while a skunk-sprayed dog is barking and running in circles around you and you're being pelted by a chattery squirrel throwing acorns at your head while snakes slither up your pant legs. Think about that for a moment. 

Many special needs kids and adults don't understand social mores and have poor impulse control. Some don't like to be touched, some seek touch as if it were a drug.  It takes a lot of energy and concentration to hold it together as much as they do during worship. And even if it seems like they're fidgeting, odds are they're paying closer attention to the sermon than you are. 

As a parent of a sensory-avoiding child with high functioning autism (the first part of this post) and a sensory-seeking child with high functioning autism (the second part), worship is an interesting experience for me. I have been the recipient of glares and stares during worship when a child is being loud or fidgety or dives under the chairs to avoid people touching him. I've tried to find quiet ways to leave the sanctuary with children having sensory meltdowns, and short of getting a straightjacket and a muzzle, I'm not sure I'll ever succeed. Although my autistic children tell me they would LOVE a straightjacket. 

I've spent many a sermon hugging and/or swaying with a child - or in the bathroom or quiet room with a child in mid-overstimulation meltdown. I have allowed my sensory avoiding child to sit alone in the Fellowship Hall during worship and my sensory-seeking child to exit stage left and find a place to flap his arms and walk in circles until he can regain his composure. I've read more sermons online than I have experienced in their entirety in person. 

Please remember, we are ALL children of God. We all deserve to be treated as such - with patience, love, and grace.