(My granny loved me so much….and was quite a traveler.)
“There was nowhere to go but everywhere,
I’m in the middle of a serious waffle making chore so my thoughts are pretty scattered…but I want to pass on a link to what a minister friend of mine sent this morning: http://www.huffingtonpost.com/2015/06/18/jon-stewart-charleston-no-jokes_n_7618110.html . Can you imagine the pressure on a Friday morning in America if your job is to preach this coming Sunday? In a Methodist church no less?
I asked a friend who is a professional musician for some good cello music this morning. My ENT wasn’t up for explaining why violin music is starting to cause my skin to crawl. Someone suggest trying cello and it worked. Lower frequency I guess? Who knows. So, on the topic of confederate flags and hypercusis my friend sent me this cello video: https://youtu.be/we2PPUxMMlo .
Amazing. Just four strings.
So. What is on your websearch list?
“I’m waking up feeling so thankful about the tight little group of friends that I am making.
I wasn’t ready to make friends for two years – yet the key was barely in our new door before my neighbor sent fresh-baked cookies…and how can one resist being hopeful with daily jokes from a sign language interpreter who was my first coworker in this new town we are in ?…and now the list goes on.
I’m just as introverted and still need hours of solitude and some of my rough edges will never go away, and that’s okay… and the work load is kind of huge, and it is going to get exponentially bigger soon….
When I first registered for these classes I sent a note to my (speech therapist) friend about how unreasonably worried I was that I was making a mistake to be taking this side route at this point in life and his main comforting advise was :
‘Your brain will be so happy, and if your brain is happy, your family will be happy.’
So, if you are wondering if those articles that you’ve read about language, foreign language especially being good for your noggin? It’s true. Do it. It’s not too late…
my class mates are saying the same thing…it’s like our heads smolder with information and vocabulary and grammar rules and confusion and then we go to these Deaf social events…and it works.
It’s like having a popcorn popper suddenly launch with yummy linguistic happy time. We understand, they understand us, and if there’s a mix up, who cares, we are still cordially invited to another event! So. That’s what I have to say this morning. Have a good day.”
P.P.S. The green t-shirt is showing how to do the word “proud” in American Sign Language.
If I Ever Lyrics
So this is how it feels to be breathless
When someone walks out of a room
Stay by me, we can be timeless
Less than forever is too soon
And if we ever lose our hearing
If we ever lose our sight
If all our five senses leave
I know we’d be alright
Cause it seems your heart is a part of mine
I’ve sorted through every word I know to use
And looked for beauty to define
I haven’t found what I want to say to you
But I’ll try for the rest of my life
Lets try for the rest of our lives
And if we ever lose our hearing
If we ever lose our sight
If all our five senses leave
I know we’d be alright
Cause it seems your heart is a part of mine
Gracie’s pain is being managed to the best they think we can do without surgical intervention….
Today we will be discharged…we will be making (her 90th brain) surgery date in the next few days. Grace has had a wonderful spirit through all of this. She just wants to not have pain anymore. Team Amazing Grace needs prayers for wisdom and peace…
Please pray for. Grace we are turning back to go to the. ER … I am over an hour out and she is. 10 pain. She is not well…”
Those are just a few of the frantic Facebook status updates that a friend of mine has been putting up in the past two weeks as she asks for prayer from her huge circle of online friends. She is one of a small handful of women that I’ve tried to keep in touch with for almost fifteen years on the internet. I met them while looking for information about adoption before our youngest was born. Lately contact with them has dwindled to a lot of clicking of Facebook “likes” or these cute cartoons that have a bit more flare in a response and “save time” for a “real” response. Two of us have been going in a new directions – one as a writer and me with my American Sign Language studies. One of us has been doing a lot of elder care and is busting out all over with pride as her daughter is stepping into her own skin and singing like no other all over her town.
In this small group of friends two of us, the mom whose status updates I quoted and another mom – have during that 15 years buried three children. One child took his own life and two other boys died from genetic illness. Another mom’s child has been diagnosed with a lot of maybes – but a “probably” that he is struggling with neuro sensory issues that are along the lines of autism. He is a complicated puzzle of emotions. He is a delight and she sometimes shares quotes of what he is saying out loud that are at times hysterical. Other times his quotes are heart wrenching observations about the world that should be coming from an old man, not a Ninja Turtle who is barely old enough to read chapter books.
What I appreciate about this group of friends that I have never met is that because we’ve grieved together with prayer for those three sons that died – we don’t, well I don’t anyway, always necessarily explain what prayer is being asked for when one of us requests an all out bended knee effort.
And we And I feel comfortable with not always having the time to explain the details of what is going on with me or my kids when I share with any one of this small bunch – I have sort of a code phrase that is about the song “row, row, row your boat.” If I make a swing by comment about that song it means either that I know that their mom heart is in a state of worry, or it’s a general announcement that I’m in a bind and don’t have time or space to explain why I am a ball of nerves and doubt.
I have to share something really cool that just happened…but I promised my husband I would do an important chore in a few minutes, so forgive me if I don’t make sense.
Early this morning I read what could be a day old status update that my friend’s daughter is needing her 90th brain surgery to help with hydrocephalus – I started looking for some music to send her way. Her oldest child is a wonderful musician. And I went with a liturgical dance video that I found yesterday while looking for videos of church sign language interpreting.
But…as I mentioned in my last post, music sometimes hurts my ears of late – especially violin or high pitched vocals. I read a recommendation to listen to cello music because the frequency is lower.
So, I’m watching the liturgical dance video and wondering if I should share it, got cranky that the music was ruining the video for me, and clicked off the sound button on the video itself.
I had forgotten that I had Pandora running at the same time and an instrumental song called “Expression” was being played by Helen Jane Long. (The link I attached to her name is not the same song – but just as pretty).
Here is the amazing thing: the instrumental song, when I replayed it in the background, but watched to video in front of it (remember now, the actual music that was being used in the video was turned off) – when I paired the instrumental words with the St. Francis prayer dance – they were PERFECTLY in step – seriously. Don’t quote me but I think it was in 3/4 time – and in any case, there are a few moments of silence after the song finishes and she finishes her dance prayer.
Maybe it’s just me, but I find that 15 minutes of my day much more interesting than the day of chores I have ahead. And I may not be able to to check in on my friend and her little girl until tomorrow – but I firmly believe that the music, and the dance video, and my friend’s pain, and my sadness about singing out of key- all of it – got a really, very, super nice fifteen minute reprieve.
We can’t do it all, can we now?
But every once in a while, we get a deep breath from out of what seems like no where at all.
Thank God for small favors, eh?
“Early morning singing signals to other birds
about the strength and vitality of the singer.
Singing is an essential part of bird life,
but it’s costly in terms of time and energy.
Singing loud and proud first thing in the morning
tells everyone within hearing distance that you were strong and healthy enough to
survive the night.”
~ Mary Bates, “Why Do Birds Sing in the Morning?”
Yesterday one of my best friends, one of two college roommates, posted a phenomenal music video to her high school American Sign Language students. She happens to have been hearing until age three, and Deaf ever since. I happen to have been fully hearing until of late and I’m proudly heading toward my fifties. She and I both took dance lessons for many years prior to college. But, with a huge buffet of academic and arts choices available when we arrived at college, she tended to study what she had always loved, and I tried to branch out. She majored in English and if I remember right she also enjoyed environmental science. I majored in Communication Arts/Theater and attempted to branch as far as my credits would allow into religion and all other performing and visual arts. We both still took dance classes most semesters and I enjoyed learning a little bit about choreography. One of my best memories was a final project in which she graciously put up with me trying to choreograph a dance for both she and I. I’m not sure what music we used other than wind chimes. Did I have a classmate read a story or poem? Could be. I don’t remember.
No matter. It was so fun and she raised the roof with applause at every student performance in which she performed.
Hmmm. That makes me wonder, did we think to tell her how loud the audience was hooting? Doesn’t matter now – we had a great time and our friendship is still solid.
So, this week I’ve been putting up with some most annoying ear pain that feels like infection. They took a peek and the insides look perfectly healthy. A few weeks ago the ENT said the same thing – “everything looks perfectly healthy…we don’t know why this discomfort happens.” I wasn’t in a questioning mood that day, but I managed to get an appointment again in a few weeks and I need to let him know that I have an inquiring mind and I won’t rest until he at least gives me some “it could be” scenarios.
After a good bit of research I think he is going to tell me that this discomfort is likely hypercusis : sound intolerance, frequently accompanied by tinnitus. If I do have otosclerosis as suspected I will have won a prize in comparison to other hearing loss conditions because hearing aids, a specific surgery called a stapedectomy and sometimes cochlear implants are all practiced options to possibly restore some or a lot of hearing. I also have the choice to just let it go, which I consider a fine option as well. The trick is that I’m not yet sure if any of the hearing aid or surgical options treat the symptoms and some can make them worse.
I am patient and my life is blessed though, and to some this will seem strange, to others it will really resonate:
What is bothering me right now is the realization that I’m losing my voice. Literally.
People more frequently say “huh?” and tell me that I pronounced one thing when it was another, or look at me all wonky about the sound of my voice.
I also can hit all the right notes of a song very, very rarely. It had been hurting my pride a bit for a while. Now that I understand why, I’m relieved to be able to kind of grieve the loss of a cherished companion. From my college years, graduate years, baby raising years (two out of three – the youngest hated lullabies) up until about 5 or 10 years ago I could hit almost every note, almost every time. And since performance isn’t the career I chose, harmonizing with James Taylor without effort was and is respite care – not grocery money.
Good things are happening though – I am learning to listen and let others sing for me because I certainly can hear the chords and technology gives me the option to look up the words if needed. JT hasn’t given up on me and I can still hit our harmonies if I am alone, rested, relaxed and hydrated.
And there is this – the video that my college Deaf bestie shared – it’s phenomenal in every single way. The performer is a professional video director, Deaf, and studied college at the Rochester Institute of Technology.
Here you go, enjoy. And happy Remembrance Day: Jason Listman in
who we are is fiercer than anything we know.”
~ Nancy Collier
The good thing is this – it’s only four times a year or so. I’ve been through much worse… I’ve struggled with insomnia – really scary amounts of it at a few points in time, for around 14 years now. Before that it was the “normal” kind. Worried about a test, up all night with the baby, excited to marry the man of my dreams…. But – by and large, I’ve got routines and interventions in place that have these all nighters narrowed down to four times a year or so. And the great thing is – it’s not really any longer a gigantic big deal.
It’s kind of like going to the dentist. It’s a little bit like getting ready for a birthday party. It sometimes reminds me of childbirth. It’s no worse than waiting on an oil change. It’s like meeting a new gynecologist for the first time and finding out that he is old, ugly and short. Oh well. C’est la vie, right?
No – these quarterly lay awake all night episodes have a scientific link – it happens with every season change. Go ahead and roll your eyes if you need to about Seasonal Affective Disorder. It’s a thing. It’s on my chart and lands me a half-dozen or so check ups a year to be sure that my GrandPlansToSleep a solid 8 most nights of the year has fallen off course.
And, yes – it’s all in my head.
Which happens to contain my brain.
Which creates (and doesn’t create) chemicals that lead to a decent day after day and night after night… Yet….in the end….my hope is this: I never want a Dark Night of the Soul episode…ever…again. Literally. I can’t control that I suppose, but I dread the idea that the night may become my enemy at some point again. Night is for sleep. I’d rather wrestle demons in the day time, thank you very much. So…last night I never did fall asleep.
I tried every single trick, of which I have honed to approximately a dozen. No luck. Oh well. Instead, I got sleepy watching “Madmen” for the first time with the volume too low to hear and my glasses off. (trick #8) Oh my goodness – that looks like an awesome series. Note to self.
And then, I got sleepy enough that my muscles started to twitch and my mind settled while listening to Kate Rusby on Pandora. (trick #2) No luck. She broke out into a fiddle reel and I got wound up about needing a passport if I’m ever going to Ireland.
So, I broke my CardinalRule of stay horizontal until 5 a.m. and brewed some coffee at 4:00. But…. at those several points when I tried to pray (trick #1, #7 & #12) they all kept landing back on hearing words like “you deserve this” and “don’t give up” and “just keep moving.” Motivational poster sayings. I HATE motivational poster sayings. So I became annoyed and woke right back up…
What brought me peace and lead to the decision to break my lay still until 5 a.m. rule was that for just a moment – I had a teeny, tiny little moment of: “you are enough.”
My nanosecond of real calm doesn’t change the fact that I have a crap pile of life to untangle…but for a moment as I was en route to dozing to a Celtic tune – I let myself be strong. So, if you too are experiencing your quarterly Spring to Summer Serotonin Spiritual Review – feel free to skip straight to giving yourself an A+ and consider this quote by Nancy Collier. I feel pretty certain that she is a Deaf woman who I quoted in a paper…she could also be someone else – it’s a sticky note quote on my desk that I just noticed…maybe she is Kate Rusby’s lead fiddle player, and is blind…who knows. At any rate…
who we are is
than anything we know.”
~ Nancy Collier
This morning I came across something quite beautiful that was posted on Face Book. Rosa Lee Timm, an outstanding Deaf actress, posted a clip of a wedding. This clip was of the vows that a woman wrote for her soon to be husband and it was incredible. Unfortunately there aren’t any closed captions for this clip that has gone viral on the internet. In Rosa’s comment in the status box above the clip that she shared she explained that she doesn’t know what this woman was saying – but that it certainly looked like a powerful message based on her husband’s reaction. She commented how she admired the beautiful and massive hairstyle of the bride, and I agree! It’s dynamite! Feel free to see for yourself by giving this great looking couple a gander. Back in the day, if I had known about flower covered archways I might have put more eggs in that basket – this one is beautiful! So – the film shows an extraordinary to look at couple who generously share parts of their unique wedding online. What the bride says is about far more than young love though – it was about the reality that accepting life’s greatest experiences often requires an extraordinary amount of courage to endure the worst patches as well. One doesn’t have to be Christian, as she is, to know this to be true. It’s a universal thing – if we are going to experience even a slice of a full life we need to dare to leap, and experience fall, after fall after fall. And intimate relationships are the messiest and most wonderful experience of all: Marriage, parenting, grand kids, nieces nephews, friendship, siblings, pets – it’s all a gamble. Anyway – I enjoyed knowing that I’m not the only relational chicken-sh*t on the planet and the video warmed my heart. For those who can’t hear what she said, this is some of what I jotted down from the video: “…sitting with this piece I wrote called “I Waited for You” I realized that you are my sequel. You are what I asked for, and I will be content with whatever the will of God is, and He chose somebody strong enough to deal with me…. I waited for you. Did you know that I’m not her and that I partially agreed to the wait because I didn’t believe that you existed in the first place? But in the slight, rare possibility that you did, you would definitely not want me, because I’m not her. …I choke on words like ‘want’ and ‘need’…I am the one that fairy tales tell you to stay away from. I was never Cinderella…I was never the Princess. I was the fire breathing dragon…yet you chose to knock on the door of this castle: my heart….unaware that an invisible fortress had been built, due to much more experienced pain than a sting… I was in a relationship with pain…and I loved him but I hated him, because pain had been faithful for years... beauty to me was incomplete…there was no heart in the house tonight.. nights like this I would wish and pray ‘Our Father who art in Heaven, hallowed be thy name, please allow the clouds to gather and the sky to to turn to gray, lead us not into temptation…Oh how I wish that it would rain so that when I look into the sky I can see my reflection’. …(after I met you) I stepped out into the sun. He is the one that knows me. He knows me. He has the ability to foresee and He still loves me. So, I stepped outside…only to see you outside my door and I was terrified… Why couldn’t I believe that your hand placed gently on the back of my neck calms me. I hate the way my heart became a defiant teenager. I got tired of the fight and decided to prove to you that you too would leave…I kept asking myself ‘who are you’ while climbing the attractive Mt. Everest of your mind. I attempted to hike a little higher to take a peek at your soul…your condition of unconditional is where I fell…
your love is too much…
it’s hard to breathe when anyone gets close…stand close and let me inhale your exhale…you collect my tears like wilted, wet bible pages…you remind me that as long as I stay close to Him I’ll never thirst again..
staring into your eyes for the first time
and it was like
staring into the back of the moon,
only to find out that IT shines too.
You are patience like a tailored suit…we are not Romeo and Juliet…but we too are a beautifully written tragedy…but we will continue and stand in His word and drink Truth… I know they told you ‘good luck’ with her…may the Lord continue to orchestrate this beautiful complex chord progression… today I will let my ‘yes be yes’, and my ‘no be no’, and today my ‘I do’ be ‘I do.’… I vow that I won’t tap out, I won’t give up...I vow not to say things like ‘you complete me’ because you don’t..in Christ I have been made complete…this will be my constant reflection because death on that cross was the greatest display of affection.
I’ve learned that He loved me enough to give me you, and so I vow to you my last breath.”
Well now, I hope that da Vinci is right, because the world around me seems to believe and behave otherwise. If I had time this morning, I would figure out what the sound level of my dishwasher is right now. At the moment, my house is silent other than
1: the dishwasher – a noisy one. Very noisy.
2: my dog Paul and the clinking of his dog tag on my feet. and
3: the pleasant chatter of NPR news which I’ve got at a low-level to keep me company and on task.
I’m pretty sure that I can also hear our dog Lennon chomping on some breakfast as well.
Probably this sound mix seems relaxing to some, boring, or maybe annoying as crap to others. My youngest son LOVES noise – he makes a lot of it, and feels anxious if he’s not surrounded by a clashing mix of various people and media streams. Oh, I think that most of us like the IDEA of silence – and maybe even envy those of us who are quiet and highly sensitive souls. I’ll let you research the statistics yourself, and they certainly are out there. Our world is getting louder. Commercials, radios, classrooms, churches, grocery stores. You name it. All of the day to day places we go to have been proven (in first world type of settings) to be really, really loud anymore. So with that in mind, indulge me as I start sharing some tough crap I’m up against of late.
I can’t be the authority of everything I want to control and change – and I can’t perfectly manage my sound environment – after all, I’m not cloistered and I’ve not yet taken a vow of silence. But I LOVE what Da Vinci says, and I want to switch his quote up to something more personal:
“Nothing can, nor has ever strengthened my authority better than silence.”
And, on the flip side – lore has it that the reason VanGogh cut his ear off is not because he was insane, it was because he had tinnitus – sound that is not sound. It’s fake noise that is created by the brain of someone who is hard of hearing or deaf. It can be related to a lot of things – injury, stress, a reaction to environmental sound, tight jaw muscles, and from what I can tell – it always involves an out of the norm auditory system or event.
I still don’t know why it is true, but I found out a year ago that my hearing status, for now in one ear, is permanently out of the normal range. That may not sound (pun intended) like a big deal, but it really is. It’s a very big deal for me. What I’m up against isn’t as clear as the typical getting older and starting to hear less clearly.
Strangely enough, it is the symptoms that come with what ever is going on in my auditory system that is, I have to say, kind of maddening at times. And what I have going on isn’t even in the ball park of what many hard of hearing and Deaf folks go through. Thankfully, this isn’t my first unexpected life rodeo ride, so for the most part, it’s not too hard to take in stride. I read this morning that one way to deal with tangled feelings from our past is to accept our limitations as deeply and quickly as we can when these limitations become clear. I agree for the most part – I’m a fan of facing the truth, even when it sucks.
So, in a few weeks if at my 6 month hearing test the truth is that my hearing status is the same mild and mysterious scenario, my body is still going to keep telling me: things just are not right. If the ENT is dismissive and says again, “we don’t know what’s going on, there is nothing we can do yet, come back in another six months,” how should I respond?
The discomfort of constant ear pressure and the annoyance of mild tinnitus that I deal with 24/7, again, is nothing compared to many others. I am getting to know a lot of great people who have profoundly difficult symptoms such as frequent vertigo or severe tinnitus. Many of them can’t work, and many of them work anyway…how, I’m not yet sure.
I do know this:
I adore American Sign Language (ASL). It’s not just fun (which it is), it’s not just cute (which it can be) it IS – well, it is indescribably in written word. Because it’s not – it’s not English, and it isn’t written. It is something that we DO and SEE.
It is the BEST language ever, and I would say the same if my hearing was top notch. It conveys feeling, thought, time, time, space, story, history, and details in a way that no other language will ever be able to do.
So, “God willing, if the creek don’t flood,” hopefully between now and mid-April, I will have the courage to face this ongoing physical limitation by allowing myself to reflect on these difficult questions and not feel ashamed of the resulting fears and anxieties that are about as normal as normal can be.
I’m out of time and brain juice to figure out a way to transition what I’m saying to a recommendation to read these two articles from a friend – so I’ll just add them as a Post Script here. They are all about the topic of this blog: grace.
Take care, and be warm, Kate
Staying open to Grace: http://wp.me/p3gSTz-T2
When ‘Happily Ever After’ Meets Life’s Hardships: http://www.everydayhealth.com/columns/therese-borchard-sanity-break/when-happily-ever-after-meets-lifes-hardships/
A Super Duper Beautiful poem: http://youtu.be/9GdawG7CBNo
For those of us who observe Lent, today is a day that we are asked to be brave and remember that some day we will die. It is Ash Wednesday. We remember that we aren’t perfect, and as Christians, we need to renew our awareness that Jesus offered His life in order that we may stumble into God’s light….but not alone. God doesn’t want us to be afraid of failure – but the relentless pressures of life, even the most basic stuff, sometimes feels just like a black smudge right in the middle of my noodle.
So, sometimes I imagine my worst fears, my greatest burdens – I dredge them up and then close my eyes and imagine that I am in a row boat with Jesus. Some days just the undone heaps of laundry are enough to send me into an anxious flurry of worry. But, the boat image – it always helps.
The President of Saint Ambrose University wrote something interesting in an online Lenten reflection:
“The great Psalm 51 is perhaps the ‘classic’ articulation of our awareness of our sinfulness:
‘Have mercy on me, O God, in your goodness…For I acknowledge my offense, and my sin is before me always.’
We know that we are need of forgiveness: from God, from each other, even from ourselves. In God’s dealings with humanity as seen in the Scriptures, we see that God asks us to DO something in order to show a sincerity in our search for forgiveness.
I also found some related quotes, and have been pouring through some photos which, to me, don’t smack of failure one bit.
“Time is the coin of your life.
You spend it.
Don’t let others spend it for you.”
“Nothing strengthens authority
as much as
Leonardo da Vinci
“But as for you,
be strong and
do not give up,
for your work will be rewarded.”
2 Chronicles 15:7