Frustration

Every once in a while someone will ask me how I manage to do it.  How I manage to go through life with a smile on my face no matter how many blocks are stacked against me.  Most the time I just smile and say that it’s not all that bad, that I just smile and go on with it because I have no choice.   And I usually don’t write when things are bad.  I might write when things are a little bad, but never much.  I try to make light of it or find humor in it, but to really write, I tend to avoid that.
But not today.   Today is a mostly uncensored picture of what really bad looks like.
I have a chronic underlying medical condition that affects how my body processes sugar (and carbohydrates which are broken down into sugar).  Most the time it’s not a big deal, it just stays dormant and I don’t really have to worry about it.  Every so often it flares up.  A couple times a year, typically right after a major holiday or a time of major stress (read: exams), and even more so if my immune system has been compromised by seasonal bugs (stomach flu, influenza, colds, etc).  Like it or not, I’m in the midst of a nasty flare. Which means I’m grumpy, I have frequent headaches, I want to sleep all the time, I’m nauseous, I have to take icky medicine, and I can’t eat anything.  I’m allowed to eat unlimited amounts of nuts, eggs, meat and fat.  Except I’m severely allergic to nuts and eggs.  So that leaves meat and fat.  And very limited amounts of other foods, some more limited than others.   I can have some rice and vegetables (as long as they aren’t starchy), but next to no potatoes, fruit or processed grains. It wouldn’t be a big deal if I had the energy to think about meals and unlimited resources to figure out what to put into my body to limit getting sick.  But I don’t.
And then factor in the wheelchair.  About two weeks ago I took a nasty fall that injured my knee.  Initially the doctor thought it was just a bad sprain.  Gave me some anti-inflammatory drugs, told me to ice it and stay off of it and call him in a week if it wasn’t better.  I called him last week.  It was some better, but nowhere near all better.   He told me to give it another week.  That week will up tomorrow.  I’m still waking up at night because of the pain.  I spend a large amount of my day in a wheelchair borrowed from church, because it’s faster than trying to get around on crutches.  I use the crutches if I don’t have far to go and don’t have much to carry with me.  On the bright side, my left leg (the “good” leg) and my shoulders are going to be super muscular by the time this is done.
I’ve always had a decent idea of how inhospitable the world can be to those in wheelchairs, but actually spending a lot of time in one changes your perspective a bit.  For example, at the seminary, the only street side door that operates via a switch is by the library.  The door where most of the community enters the seminary (by the community kitchen and commons and chapel) does not operate via a switch.  Because that door is relatively light I’ve learned to master it by grabbing it with my right arm, flinging it open, and then quickly maneuvering myself in, just far enough to keep it from closing on me.  And then repeating the whole thing with the next door.
Bathrooms have become more accessible over the years, except for the part where you actually have to get into the bathroom.  For some reason building people like to put really heavy doors on bathrooms.  And almost no bathrooms have switch operated doors.  To get into a bathroom I line myself up backwards to the door and push as hard as I possibly can.  And then I push some more.  Sometimes I can get it.  Sometimes I have to wait for someone to help me.  And then there are those wonderful bathrooms like the one at church that have a decorative flower stand type thing just inside the door (it actually has a basket on it that has emergency supplies in it).  Sometimes it’s too close to the door and in my Rambo-style pushing to get in, the door hits it and knocks it over.  The wheelchair usually fits in the stall, but then there is no wiggle room at all.  I have a good leg that I can pivot on, but it’s still a fine art of getting from the chair to the throne and back.
Oh, and during all this it hurts.  My knee just doesn’t stop hurting.  I can’t ever forget that it hurts.  It won’t let me.  By the end of the day, the pain is so ridiculous that I’m ready to cry.  And sometimes I do.  Forget the effort it takes to try and make dinner or take a shower.  Forget independently going to go get groceries or even getting to the pool for the aqua-therapy that will make it feel better.  I’m doing amazing to managed to get out of the house for class in the morning (it’s not graceful, it’s not pretty, it’s not dignified, but I can do it.  Sorta).
And that’s just part of the picture.  I’ve got a sinus infection dealie going on right now.  I can hear even less than I can normally hear.  As fluid shifts in my ear canal my balance goes wonky and the sound keeps shifting.
Oh, and my fiancé is in a different state (and time zone), we’re  planning a wedding and going to school and working church.  This is life.

How do I do it?  Some days I smile, other days I cry.  Not every day is good, not every day is bad.  Most days are good, many fall in between, but sometimes, sometimes I have those really bad awful no good kind of days.   And then I go to bed and hope the next one will be better.

Acceptance

In the last year and a half that I have worked at First Reformed Church I have worked with lots of "challenges".  I've shown up to work with mono, on crutches because of tweaked knees or ankles, with ear infections, with my central auditory processing disorder flared so bad I could hardly understand what was going on around me, and so on.  But today was different. I showed up to work in a wheelchair.
Due to a unfortunate incident involving multiple pairs of ice skates, a bunch of friends and a small child I have badly sprained knee.  Doctor says I am supposed to stay completely off of it at least through the weekend, along with icing, elevating, etc.  And since I always listen to my doctor I'm in a wheelchair.
To be honest, I was a little nervous. I wasn't nervous about staff meeting or homework time or anything like that.  I wasn't even really nervous about the community dinner.  I was nervous about teaching my class of 4 and 5 year olds. How would they react to me in a wheelchair?  Would I be able to lead the class well from a wheelchair?  Would I have three kids or nine kids?
My fears were unfounded.  The kids hardly seemed to notice.  The only time any of them said anything was when we were singing "Stand up, Sit down" and one of them suggested I raise my good leg instead of trying to stand up when we got there.  By the time we were done class, I was playing "tickle monster" with all of them just fine.  Class from a wheelchair had gone just fine.  The biggest problem I'd actually had all day at work was trying to get into the ladies' room.  Once I was in I was fine, it was just the getting in part that didn't work out so great.
What struck me most about the whole experience was that my kiddos were so accepting.  There was no questioning, not fear, just acceptance.  Miss Joy was simply in a wheelchair and that was that.  One child came up behind me and started pushing me and we had a little talk about wheelchair etiquette, but other than that, things were good.  And that made me happy. I wish more people could be like that.  So accepting, so innocent.

Don't Point!

I stood singing in church one morning, my hands moving as much as my mouth.  The church-provided FM system hung over my right ear, the wire snaking down to the box clipped to my pocket.  Out of the corner of my eye I saw the little blonde haired blue-eyed girl in the row behind me pointing at me.  I turned to smile at her and watched her ask her mommy why I had the funny thing on my ear. I watched her mommy pull her hand down from pointing and saw the words "don't point" as they came out of her mother's mouth.  The rest of the reply was lost as the mother and the child turned away and we moved into a time of prayer.
My heart wanted to yell at her or at least offer gentle advice, since I'm not exactly the yelling and screaming type of person.  I wanted to tell to let her daughter point, to let her daughter ask questions, to let her daughter ask *me* questions.
Some of you mind think that this sort of response encourages rudeness or impertinence and perhaps it does, but that's not how I see it.
The genuine, inquisitive, questions of a child who doesn't yet understand the world around her are not offensive.  Neither are the genuine inquisitive questions of an adult who does not understand the world around them.
What *is* offensive though is people who assume they know the answers without asking.  The people who don't asking can't really know.
If we hadn't been sitting in church and I had the opportunity to interact with the child, I would have taken my FM system off and handed it to her and let her listen.  I would have shown her my hearing aids and explained that my ears were broken and that hearing aids were like glasses for my ears.  I would have told her that I use my eyes to "hear". I would have asked her what her name was and then shown her How I would fingerspell it.  I would have answered her questions. And I would have answered the questions that her mom was too afraid to ask.
And I would have told her them that pointing was okay, as long as they weren't laughing as me when they pointed.

Filling in the Blanks

When you hear like I do,  you are constantly filling in the blanks.  And when you’ve been hearing like I hear for as long as I have, you get pretty good at filling in the blanks.  Let me explain…

There are many word pairs that sound very similar to me/my brain.  For example:

loom – wound

lettuce – let us

send forth – send forks

scrolls – squirrels

Irenaeus (theologian) – urine on us

affect – effect

she – he

pants – dance

hooks – books

redress – regress

let – led

gun – done

This is just a quick list - things that have tripped me up in the last week or so.  At first glance, the words on that list look different enough from each other in meaning that it would be difficult to confuse them. But take a sentence like this, which I actually heard this week.  It was said by my mom, in reference to my 13 year old brother, who is rather accident prone (he doesn’t always think things all the way through) and who also weaves on a table top loom.

“I need to go help him redress/regress his loom/wound because it’s become un***n” (***  represent that I missed part of a word and had to fill in).  

I may have missed more than that, but don’t remember because the words were easy to fill in.  For example, I don’t think I heard all of the “him” or the “his” but they were easy to fill in because I knew she was talking about Isaac.  Based on what I heard/didn’t hear, I could have filled in the blanks in multiple ways, more than one of which made sense:

…redress his loom because it’s become undone

…redress his wound because it’s become undone

…redress his loom because it’s become uneven

...redress his wound because it’s become uneven

…regress his loom because it’s become undone

…regress his wound because it’s become undone

…regress his loom because it’s become uneven

...regress his wound because it’s become uneven

All of the options containing “regress” could be dropped quickly.  The word “regress” just didn’t make sense with the other words my brain tried to put in the sentence.  That still left me with four sentence options that made wonderful amounts of sense, but warranted two very different responses!

…redress his loom because it’s become undone

…redress his wound because it’s become undone

…redress his loom because it’s become uneven

...redress his wound because it’s become uneven

…regress his loom because it’s become undone

…regress his wound because it’s become undone

…regress his loom because it’s become uneven

...regress his wound because it’s become uneven

Had Isaac hurt himself or was his weaving project in jeopardy?

Acknowledging that I couldn’t fill in the blanks on my own and asking more questions led to the conclusion that Isaac was fine, his weaving on the loom had become uneven and she had to help him make it even again.

8 options for 1 sentence.  After my own work, 4 options for the 1 sentence.   For me, this is not unusual.  This is a part of my everyday life.  Every time I take in information using my ears, with or without the benefit of speech reading, I have to fill in blanks.

As frustrating and as confusing as this often is it is also a blessing.  I have a friend with a very similar hearing loss to me (different cause, similar results) and see agrees with both the frustrations and the blessings.

We are used to filling in the blanks.  This is great when you are learning a new language.  Because we are used to not hearing every word, when we try to learn a new language we don’t get upset about missing a word or two.  Of course, this has its downfalls too because we don’t always pay attention to the details such as gender and case (we miss most of them in our first language, why should we worry about small details such as gender and case?!?!). Naturally, once you get passed the beginning stages of a language, this becomes a problem.

Honestly there was no huge point to this post.  Just thought maybe someone would be interested in what it’s like to hear like me, so maybe you can understand why I sometimes ask questions that make no sense or respond inappropriately.  Cuz sometimes, I fill in the blanks wrong.

Gluten Free communion bread

Today was Worldwide Communion Sunday.  For those of you who didn't grow up in the church or just have no idea what that means or why it's important, it's basically a Sunday where many churches around the world have decided to celebrate communion or the Eucharist.  It's really neat to realize that on this particular Sunday churches all over the world are doing the same thin, albeit often in very different ways.
The church I worshiped with this morning served communion with naan-bread and grape juice.  Other churches served wafers and wine.  Others served white wonder bread. Some bread had leaven, other bread was unleavened. Tonight a friend served me homemade gluten free bread with cranberry juice. Regardless of what was served and the exact theology each congregation holds to, it was all a celebration of the same thing, the marvelous sacrifice of Christ on the cross.
As I sat there, not taking communion in full (we were served by intinction (dipping the bread in the cup) this morning , but I got a cup from the elder that was serving those who couldn't get to the front), I thought about bread.  If you've read what I've written about communion before, you know that the bread is a big stumbling block for me. The gluten found in most bread can make me super sick. And that's not fun.  So, as I sat there I thought about gluten free options for communion (for the bread only...if you want to read more about doing gluten free communion properly/safely, read one of these posts: Post 1, Post 2 or talk to me (I've done some work on this topic) or someone in your congregation who has experience with gluten free eating.).

One option that is relatively easy and safe is to take gluten free communion wafers.  These are certified gluten free and keep really well.  Of course, if your church has been using bread since the foundations of time, it might be a bit of a huge switch and something you have to work through as a congregation.  The most common (perhaps only) gluten free communion wafer is from Ener-G foods.  It is free from just about everything including leaven, nuts, egg, dairy, shellfish, corn and more.

Another option is store bought gluten free bread.  If that's what you want to do, and if that's what is going to work best for your congregation, you want to pick one that doesn't have a huge list of ingredients.  The more ingredients the bread has, the more likely someone is to be allergic to something in it.  You also want to make sure you get one that isn't crumbly, which is hard.    If your congregation is nut free, Kinnikinnick foods are all nut free, but many of them have eggs and dairy in them, so if you are going with a store bought bread, check with your congregation.  I think they all have corn so I can't have any of them and I don't know how the crumble factor works.  Other companies such as Udi's or Glutino also make gluten free bread, which I think is nut free, but does contain eggs and dairy.  Again, check with your congregation to see if this works.  In Ontario check out El Peto.  They have lots of different breads and some are free of most allergens, such as their potato bread (one of my favorites when I'm on the farm).


Yet another option is to have someone in your congregation bake gluten free bread.  All the cautions that apply to using store bought bread apply to this option too, along with making sure the person is who doing the baking understands allergy friendly baking and the risk of cross contamination. 


The most important thing is to talk to your congregation.  Don't assume you know that they need. Because you don't.  Talk to you congregation and really listen to them. 

Rant

This rant is directed at no one in particular...mostly just at life in general, yes there have been more than a few triggering events in the last week or so, but they have all been dealt with in a more appropriate manner than a public rant.
It is very frustrating when people try and decide for me what accommodations or support I need or whether or not I should participate in a certain activity.  

I realize I have limitations.  I realize there are things that I cannot or should not do.  I know what these things are.  I know that being around strobe lights is a bad idea.  I know that eating a peanut butter cookie is a bad idea.  I know that staying up late/not getting enough sleep is a bad idea.  I know that driving a car is a bad idea until the seizures go away.  And hey, guess what!  I can make decisions about these kinds of things all by myself!


I know that I need signal lights to alert me to alarm clocks and smoke detectors.  I know that I need to input information in ways other than just normal sound. I know that I need to be careful what I eat so I don't get sick.  I know I need to watch my fluid and potassium intake.  I know I need to take my meds.  I know I need to use handrails if I'm having a bad balance day.  And hey, guess what! I know all those things all by myself!


Even if I don't always act like it (I still like coloring books and play-doh and popsicles and playgrounds), I am an adult. I can make these decisions myself.

I'm no longer 5 or 6 years old.  Or even 14.  I am a responsible adult (at least, most the time).
I touched on this briefly in the post "In the Interim" a short time ago when I shared a post from a friend, but this time, it's my words.   Just because I live with differing abilities doesn't mean I can't make my own decisions.

Let me be a grown-up, please.

In the Interim

I have thoughts.  I want to write them.  Thoughts about love and alarms and the coming of Christ and Disney Princesses and alpaca babies and sunshine and butterflies and coloring book, but there has been a temporary setback in my ability to write these thoughts out. So in the interim, I leave you with this.  It's part of a note posted by a dear friend of mine (used by permission).  Due to a potentially chronic disease her life has been altered by diet changes and medications.  While her experience is different than mine, many of the things we feel, especially when it comes to social situations, are similar.  She did such a wonderful job capturing her thoughts and feelings, and unintentionally capturing mine, I decided to share.  I resonate most with what she writes about being socially isolated and people trying to make decisions for her.  The awkwardness of having to turn down a dinner invitation or explain special food needs or bring your own food to a function or back out of plans at the last minute because you are too exhausted or slip out to take your meds discretely is almost always less painful than not being invited in the first place. I have limits too, but I am a grown-up and can make my own decisions about when I need to slow down.  And, like my friend, I have a giant granny pill pox too.  (It's almost identical to hers). 
Without further rambling from me, here is the final portion of her note.  The only change I have made it to abbreviate the name of her condition to help protect privacy (and because it's really not that important):

It’s been hard dealing with the drugs and a special diet and everything else, but when I look back to where I was and how far I have come, I am glad I’ve been able to do these things and had people to help me along the way.  Yes, I carry a giant granny pill box with me everywhere and sometimes feel like my life is dictated by my med alarms.   No, I can't usually eat what other people are eating.  But if these things will help me to get my life back, they really are small sacrifices.

But it still has been hard to face my limitations.  It’s been hard to be different.  It’s been hard to not do everything I once did and everything I still think I should be able to do.  It’s been hard to accept help from other people.  It’s been a journey, and I know the journey is not over yet.  But it hasn’t been a journey I’ve had to travel on my own.  Yes, I have often tried to push people out of my life.  I guess it’s like I get to a point where I’m tired of depending on other people and being a burden, so I decide I’m going to live life on my own.  So I try and push everyone away.  But this never works.  God didn’t create us to live life on our own.  He created us for community.  I understand this in my rational moments, but unfortunately, all-too-often I have been less-than-rational.  This journey with LD often feels like one giant roller coaster.  (Honestly, it feels like I’m PMSing 24-7.)  Some days I can handle the ups-and-downs and take it as a part of life.  Other times I just get angry….angry at life, angry at the disease, angry that I can’t do what I want to do, angry at God, and even angry at you, if you happen to be in the wrong place at the wrong time.  I’ve never really been an angry person, and I have a hard time knowing how to deal with this anger.  In retrospect I can usually see what a jerk I was, but at the time, I’m just angry, and say and do things I shouldn’t and hurt people who I love.  (This is not a justification or an excuse because I am still responsible for my own behavior, but when I saw, “moody, irritable, and cry easily” on a list of LD symptoms, at least it made a little more sense where it could be coming from.)

I often feel isolated and lonely in this world of disease.  It’s a world I don’t understand and I’m living in it so I really can’t expect others to be able to understand it.  But I feel like people are always wanting to protect me.  It’s like because I’m sick, I’m now “fragile.”  They’re trying to keep my health and well-being in mind.  They’re trying to help with my healing.  So they end up doing things for me in an attempt to save me energy and bless me.  In some ways I am grateful, as the tasks they do are often things I probably couldn’t do on my own.  But in the process, so often I feel like I’m useless, like I’ve been put up on a shelf with the ceramic figurines, left to gather dust, but beyond that, I’m really not good for anything and will soon be forgotten.  Other times they don’t ask me to help out or be involved in things because they don’t want to overwhelm me.  They’re trying to protect me, and give me a chance to heal.  Like that ceramic figurine placed carefully on the top shelf out of reach, they think it’s a whole lot better to leave me alone than to actually touch me and risk breaking me.  But even if I have limits, I can still make my own choices.  I can be given opportunities and allowed to choose if I take them or not.

In this world of disease, I also often end up feeling very socially isolated.  Not only am I no longer a useful member of society, so often I feel like I am not invited somewhere because they know I can’t eat the food, or I will probably be sleeping, etc.  They don’t want me to feel left out or put me in an awkward situation (such as sitting at a restaurant and trying to explain to the waitress that really, they can’t make food that I can eat so I’m just going to sit here), so I’m just not invited.  But in reality, this just leaves me feeling more lonely and forgotten.  Or I’m with a group of people, and they totally talk “around” me, not even acknowledging my presence.  In these situations I’m left wondering if I’m not wanted, or they’re assuming I don’t want to be included, or they don’t know how to include me so it’s easier to ignore me, or what.  It’s hard.  Our society is very focused around food, and you become VERY aware of this when food is taken from you.  And let me tell you, it’s already a whole lot of fun to be eating a spinach salad while everyone else is enjoying yummy goodies, and it just makes it better when people tell you over and over again, “Yuck!  That looks gross!  I’m sure glad I’m not eating that!”  For the most part, I’ve come to terms with my special diet, but people telling me my food is gross really doesn’t help this situation.  You may not enjoy it, but guess what?  You don't have to eat it, so please keep your comments to yourself.

And speaking of food, yes, I am losing weight, and yes, I am aware that I don’t have weight to lose and that my bones are protruding in places they shouldn’t be.   Yes, I know most my clothes don’t fit me anymore and I look like a bag of bones.  Trust me.  I know these things—without you telling me.  You don’t need to point them out to me, really.  I know them, and everyone else has already taken it upon themselves to remind me of it as well.  I don’t need you joining in, too.  I have become very self-conscious of my body, and you telling me I need to gain some weight doesn’t help.  You try cutting all sugar and gluten out of your diet and not losing weight while you’re healthy, and now add the absorption issues that come with LD to that, and yes, you, too, would be losing weight.  Without your help, I am reminded of this every time I walk by a mirror. Without your help, I am reminded of this every time I put on a pair of jeans and have to tighten my belt to hold them up.  Without your help, I am reminded of this every time I put on a shirt and feel like I’m swimming inside of it.  Without your help, I am reminded of this every time I put on a dress that I’m supposed to wear for one of the weddings I’m in this summer and wonder how I will be able to hide my ugly, gangly body so that I don’t mess of the perfect pictures of the weddings I’m in.  Giving me recipes for high calorie, good-tasting foods that I can actually eat would be a whole lot more effective method of dealing with my weight loss than telling me my clothes don’t fit and I’m going to blow away if I don’t put more meat on my bones.

Most days I’ve come to terms with where I’m at.  I realize I am quite blessed to have family, friends, and doctors who have helped me figure this thing out and get on top of it before it became a bigger monster.  And although I can’t say this journey has been the most fun thing in life, I have also learned a lot through it.  I know God has me here for a reason, and He isn’t abandoning me here.  But there are still plenty of days that are just stinking hard.  And something seemingly small can very easily set me off.  Just last night some friends were going out stargazing.  I LOVE stargazing, but I knew I needed to go to bed.  Instead of being able to handle the situation like a mature adult, knowing there would be plenty more opportunities to go stargazing in the future, I became angry at this stupid disease for interfering with what I wanted to do, and angry at God for leaving me here for so long.  And now today, it’s tough to think about the fact that I am starting year two.  I had gotten to a point where I had accepted the fact that I just need to take one day at a time.  Well-meaning people will often ask me how many drugs I have left or how long it will be til the end.  These are questions I can’t answer, and I have more or less come to terms with not having answers to.  But every time I throw a drug bottle in my empties box and see the pile grow a little more, I think about the pile it came out of….a pile of unknown size.  On good days, I think, “That’s one more bottle closer to being better!” but on bad days, my mind creates a picture of a mountain of full drug bottles so big that the growing pile of empties doesn’t even look like an ant hill in comparison.  This is not a journey that has a known ending date or even destination, so I try and focus on the here and now, seeing how God is working in the midst of it.  But even as much as I try to take it one day at a time and not focus on the time, it’s hard to think that I’m starting another year.  This last year has been tough.  I don’t expect this next one to be easy.  And dare I say it?  I don’t know how many more there will be in this journey....  But God promises to go with me all the way, and I guess if He's going with me, the journey will be worth it!

PS: (From me, not my friend)  I am currently not losing weight.  I'm actually gaining some at this point because my limitations have made it much harder to be as physically active as I should be. But rest of it, spot on.

The First Time Can Only Happen Once...

It seems kind of self explanatory, you can only do something for the first time once, but it's easy to forget.  Sometimes, when we look at our churches, we try and look a them with the eyes of a first time visitor, but really, we can't do that.  Sometimes, we need a real first time visitor to come look with fresh eyes, but that isn't always practical.  So, what we can do, is try and look with fresh eyes.  Maybe visit a church that is new to you.  Pay attention to what you notice/don't notice and then come back to your church and look for those things.
One Sunday in February I visited a new to me church (I wrote about it some in the post entitled "come, for all things are now ready"). What I have to say next might sound highly critical of the church.  In some ways it is, and I feel badly about that, but at the same time, I want to be honest about how I experienced this, in the hopes that it will encourage everyone who reads this to look more critically at their own churches.
 My visit to the church started before I actually got there.  Because of the role I was going to be playing in the service, it was going to be important that I could hear what was happening. Otherwise, the group I was working with was going to have to make some changes.  We wanted to know so we could plan ahead.  I started by visiting the church website, looking to see if they had a sound loop or FM systems available. Their website was less than helpful.  There was no statement of accessibility of any kind on their website.  They even had a link to their bulletin for the Sunday I was going to be there.  I read through it, hoping for some statement of accessibility. Nothing.  To raise my anxiety, the picture of the church on the website looked as if it was a great big, old, beautiful church building.  I love old beautiful church buildings, but typically, they are inaccessible.  We decided to wait until we got there and see how bad things were.
We arrived at the church in good time, about half an hour before the service, mainly because we had to practice. I looked at the doors as we entered, hoping to see the familiar blue sign indicating the presence of the a hearing loop. There was none.  I look at the door to the sanctuary, hoping that there would be a loop (that would make things a lot easier for me).  There was no familiar blue sign.  Since I was there way early, and since, because of the role I was playing in the service I need to talk with the sound technician anyways, I asked him if the sanctuary was looped.  It was, which was a great thing for being able to hear the sermon.  However, the loop did not include the stage, which meant it was not very helpful for me being able to hear while I was on the stage (perhaps the most critical place for me to actually be able to hear what was going on that morning).  I was frustrated, both by the lack of signage indicating the presence of a loop, and by the fact that it didn't encompass the stage.  The first frustration was the greatest though.  I was there in plenty of time and need to speak with the sound technician anyways, so I could ask about it and get my answers.  A "regular" visitor would have had no way of knowing that the sanctuary was looped.  
I was already in a state of judging accessibility in the church, so I kept my eyes open to see their strengths and weaknesses.  Unfortunately, I didn't see many strengths. Their sanctuary was beautiful, with smooth wooden pews (very fun for sliding on), but there were no "short pews" to allow for wheelchairs to be present in the sanctuary in a non-conspicuous way. There was a wheelchair lift to allow wheelchairs to come up to the level of the sanctuary, but it was one that needed a key to operate it.  A visitor would not immediately know who to ask for the key.  I can't judge how conscientious the church was about having a person with the key (or a person who knew where the key was) at the bottom of the elevator (on the main level...the sanctuary was up a flight of stairs) to assist visitors because no one in our group was in a wheelchair.
I also didn't get a chance to check out the restrooms, but based on what I was seeing in the rest of the church, my hopes weren't too high.
The big thing that struck me about this visit, and what I took away from it is that accommodations are only useful if people know they are there.  If your church has accommodations available, make sure you publicize them.  If you offer gluten free communion, list the ingredients of the gluten free bread/wafer you use in your bulletin and on your website (people with gluten allergies may often have other food allergies as well) and make sure it is correct.  Check it frequently (every time you buy new bread or wafers!)  If you have a sound loop, make sure signage is in place at your church and on your website.  If you have FM systems available, make sure people know.  Same with large print hymnals or orders of worship.  It's great to have accommodations, but they are going to be under-used if people don't know they are there.

Going to Church

The title of this post could just as easily have been "Going to Class" or "Going to Lecture" or "Going just about anywhere", but church is a place I've go to a lot, so it's been on my mind. And, to make writing this easier, I had to pick something.
When you live with a disability, going to church is an adventure.  It takes more thought for you than it does for the average person.  People in wheelchairs or people with mobility impairments have to think about the availability of elevators or stair lifts and accessible restrooms.  People with visual impairments have to think about whether or not there is a large print or braille hymnal or order of worship available.  People with feeding issues have to navigate how they will take communion.  People with cognitive disabilities have the face judgement (whether conscious or unconscious) and stares and the possibility that they won't understand what is going on.  People with seizures have to think about how others will react if they have a seizure during worship. But none of those things are really things I'm qualified to write about (except for the last one, but it's pretty boring: people who don't know you and that this is "normal" freak out, people who do know you take it in stride and life goes on.  By that time I'm unconscious so I don't notice until later anyways.), at least not on a personal level.  What I can write about is what it is like to go to church when you can't hear. Some of you may recall from "How Much Do You Hear?" that I have hearing loss that makes life a little more interesting, especially places like church, where being able to hear is important.
Even going to my home church, the church where I grew up, is an adventure every week.  DRC has personal listening devices (FM systems) available for those who need them. Growing up, I mostly saw older people with them.  Now, it's mostly just me.  I'm not home all that often anymore, which means the system is used less often and isn't always working the first week I'm home.  However, when it works, it's great.  I pick up a receiver box before I go into the sanctuary. The box is about the size of a deck of cards  and I can clip it to my pocket or waistband (like a transmitter box on a walking microphone).  It has a single ear phone attached to it hangs on my ear over top of my hearing aid.  I switch my hearing aid to "telephone" mode and turn the box on.  If the system is turned on, I get to hear everything that is being picked up by the microphone.  I can turn the volume up loud enough that I can hear it clearly.   Out of all the ways I go to church, this one gives me the most control over the volume that I hear the service at.  I like that.

An FM box and ear piece very similar to the ones I use at my home church

Using the FM system does however have its issues.  Using a personal listening system is a very visible way to worship. People can see the box and they can see the earphone.  Small children stare at me.  Sometimes the earphone does not want to stay on my ear.  If I'm holding a baby or small child, they pull on my wire and it doesn't stay on my ear. Some weeks I have nowhere to clip the receiver box and have to hold it in my hand all service. The FM system amplifies every sound frequency the same much, which isn't the most useful, since I can hear some frequencies better than others (it's simply a limitation of the type of system). Sometimes the batteries die and I have to go to the sound booth (or send my dad to the sound booth) to get new batteries (which is only effective if they have spare batteries. They don't always). The battery change takes time and in that time I miss enough of the sermon that I'm usually pretty lost when I get the box back.  Some weeks the sound tech forgets to turn the system on (that doesn't happen very often) and some times, especially if a lot of wireless microphones are being used, there is interference and I hear more static (fuzz) than anything else.
The system does let me participate in worship and for that I am grateful. It lets me control the volume I participate at, and since the earphone only goes on one hearing aid (I get to choose which side I want to listen on, depending on which ear is being more functional), I can still hear the person next to me (which makes congregational singing easier to follow. A bilateral (two headphone) system would make this more difficult). Also, it only amplifies what is going through the microphone, so I don't get overwhelmed by amplification of ambient noises (bulletins rustling, babies crying, people coughing...) A general amplification system picks all of this up and it gets loud.

When I go to church in Holland, I use a different kind of system.  First Church has a hearing loop installed in their church.  This is the most discrete way that I go to church and I like it the best. DRC used to have a hearing loop, but when they renovated they removed it. If you want to know more about the technicalities of how a hearing loop works, check out this site.  I'm not overly technically minded (and most of you don't care about the specifics), so I'm going to keep my writing simple.  Basically a hearing loop means there is something installed, that when I switch my hearing aid to the right setting, it transmits directly to my hearing aid. It's like having a loudspeaker directly in my ear.  Lots of places (especially in Michigan) have loops.  The lecture hall at seminary even has one (as long as the professor/presenter uses the microphone, it's great.  And in that room, they usually do). I know a place has one when I see this sign (or something similar):

Seeing this sign outside a church or theater or lecture hall makes me happy.

When I go to First Church I don't have to worry about picking up a receiver box or finding a place to clip it. I go into the sanctuary and switch my hearing aid (or both of them) to "telephone" mode.  The sound instantly changes.  Instead of the light conversation of those around me, I hear the organ music and when the liturgist begins worship, it transmits directly to my ear.  Often, for the first part of worship, where we alternate between listening to the liturgist and congregational singing/response, I'll only have one aid switched over to "telephone" mode.  That way I can still hear what's going on at the front and still be connected to those worshiping around me.  When it's time for the sermon and I no longer need to interact with those around me, I switch both ears over. After the sermon, I switch back to one, and when the service is done, I switch to "crowd" mode and I can transition smoothly to conversation.

The other option for going to church is no amplification.  This happens most often when I go to a new church without a T-coil or FM systems available, show up to a new church too late to find out where the FM systems are, or attend "church in the park" or something similar where there is a very rudimentary sound system if there is one at all. This is the most frustrating way for me to go to church since I can't really follow anything at all.  The one exception to this is those rare times where there is an interpreter available. Then, as long as I can see the interpreter, I can follow along.  I've worshiped this way once before and it was wonderful.
Someday I won't have to worry about going to church or anywhere else and not being able to follow what is going on. Until then though, I can do my best to make others more aware of what people like me have to face.