My Disability is not a Metaphor

Image description: photo of the song “Amazing Grace” taken from an old hymnal.

Today, I am going to write about Jesus, the Bible and Disability. Even if you aren’t a follower of Jesus, you might find something of value in what I write, because religious people are some of the worst when it comes to how they treat people with disabilities. After all, religious organizations successfully got their buildings exempted from ADA regulations in the 1990’s!

Luke 13: 10-17

Jesus Heals a Crippled Woman on the Sabbath

10 On a Sabbath Jesus was teaching in one of the synagogues, 11 and a woman was there who had been crippled by a spirit for eighteen years. She was bent over and could not straighten up at all. 12 When Jesus saw her, he called her forward and said to her, “Woman, you are set free from your infirmity.” 13 Then he put his hands on her, and immediately she straightened up and praised God.

14 Indignant because Jesus had healed on the Sabbath, the synagogue leader said to the people, “There are six days for work. So come and be healed on those days, not on the Sabbath.”

15 The Lord answered him, “You hypocrites! Doesn’t each of you on the Sabbath untie your ox or donkey from the stall and lead it out to give it water? 16 Then should not this woman, a daughter of Abraham, whom Satan has kept bound for eighteen long years, be set free on the Sabbath day from what bound her?”

17 When he said this, all his opponents were humiliated, but the people were delighted with all the wonderful things he was doing.

***

During the past week, I listened to 3 local preachers online preach from this text. The first one was short and to the point…basically, Jesus saw, noticed, zeroed in on that woman with the severely curved spine. He SAW her. A good message!

The second was unremarkable and maybe a little dry but he made a similar point…just took a little longer to get there.

The third sermon I heard has prompted me to write this blog because I absolutely cannot listen to ONE MORE SERMON where a person with a disability in the Bible is treated as a metaphor for someone’s spiritual condition or society’s ills. In this third preacher’s sermon, the woman has been dehumanized and turned into a prop to illustrate some banal point…something to the effect of “Have you been weighed down/bent over by the burdens of life, hoping that Jesus can straighten you so that you can look up into his face?” Or some such mess as that. For this particular preacher, I do know that he makes a regular habit of turning disabled people into metaphors. He’s very able-bodied himself, and speaks out of his own youthful ableist point of view. He preached a sermon a couple years ago about Jacob (whom the Angel struck and gave him a limp after they wrestled all night) and then turned it into, “We’re all holy limpers, like Jacob.” As a person with a noticeable limp, it was clear to me then that he didn’t know his audience and he didn’t really care.

I sort of get it, actually. The Christians’ national anthem seems to be “Amazing Grace.” Remember the verse, “was blind but now I see”? There you go. Turning a disability into a metaphor for your spiritual state of being has been the “Christian way” for a few hundred years. There are other Christian hymns that do this, too. I don’t know about other religious traditions, but I do know that Americans, at least, love ‘em some metaphors. And the Christian ones excel in them.

But honestly, it just needs to stop. Stop interpreting those stories that feature people with disabilities as a metaphor for your spiritual life and reread them. How did Jesus treat them? They were real people, hurting people, rejected from their communities, outcasts of society. Back then, there was no understanding of disease and medicine like we have today. If someone was sick, the devil caused it or some evil spirit was in them. They were rejected…there was no disability insurance, no government support, no physical therapist. But Jesus SAW them and that’s the power of these stories. That’s the “good news” of the Gospel…Jesus reintegrated outcasts back into society, made them feel loved, seen, heard. He even broke rules to do it…healed on the Sabbath, fed people on the Sabbath, invited society’s rejects to the dinner feast, giving them places at the dinner table.

If your faith is so crappy that you have to turn this good news into a pathetic metaphor, it’s time to reread the gospels.

At some point, almost all of us will get a disability or become disabled. Many of us with XLH got a head start and are “experts” at it. Professorgrrl recently told me about some stiffness or arthritis she was experiencing and confessed she didn’t want to mention it to me because she is keenly aware and sensitive to all my pain and mobility challenges. I told her I wanted her to share that with me, that maybe I could help and talking about it might help, too. I wanted her to know that I SEE her. I certainly am aware that she has seen me, as Jesus did, as a real person with some disabilities who is beloved by God.

It’s important that we all do this for one another, no matter what faith you subscribe to. It’s so easy to overlook people with disabilities…sometimes even doctors don’t see us or believe us. Some of us block the sidewalks in front of our houses with shaggy trees and bushes, never considering that someone in a wheelchair might want to take a “stroll” through the neighborhood. The handicap/automatic door at my local mall has been out of order for several years because no one can be bothered to fix it. We turn our heads so as not to look into the eyes of the mentally ill person who’s asking for cash because, honestly, we’ve already decided they’re going to use that money for something we don’t approve of. We’ve all done it. Some (like that preacher) have made it an Olympic sport to ignore people with disabilities, but we’re almost all guilty of it. I know I am.

So…that’s my rant for the year! Whew, glad I got that off my chest. (See what I did there? I think that was a metaphor.)

One more thing…for Christians who’d like to explore this topic more, I recently read the book, “My Body is Not a Prayer Request,” by Dr. Amy Kenny. Good stuff in there and it was so good for me to read something that expressed what I had been feeling regarding the church for over 2 years. Check it out.

Copyright 2022, S. G. Hunter and Banjogrrldiaries

On the brink of my 55th

Tomorrow I will turn 55 years old. My body feels like 75 sometimes, and my mind feels like 35 most of the time. Young at heart, with an occasional “old lady” look of uncontrollable tufts of white hairs that I can’t seem to manage with my hair brush. This is how I look before morning coffee.

In the last couple of months, I have not thought too much about how I feel (regarding the XLH). My broken foot is feeling much better, and I am taking a significant amount of time off from my job during the month of July, which gives my body time to rest from my physical job.

What I have felt in the last couple of months has not been about myself much at all. I’ve mostly been feeling bad for other people who have had some difficult times. Serious illness, death and unexpected major  surgeries have touched the lives of some of my friends and family members.  I’ve felt fortunate that compared to what others have suffered, I’ve been doing okay.

My mother has been an inspiration to me recently, too. About two months or so ago, she fell and her artificial hip popped out of joint. It took a doctor and three of her assistants to pop it back in when my mother showed up in the emergency room. (They had to sedate her first!) My mother told me later it was THE worst pain she had ever felt. She’s been recovering at home for several weeks now, with a lot of restrictions on her activity. I have spent some weekends with her and I have been amazed at how easy she has been to care for. She doesn’t complain or whine or gripe. We’ve had fun watching some TV, talking and singing duets while I played the ukulele. I just don’t know if I could be as good a patient as she has been if I were ever put to the test.

I have mentioned in previous blogs that there has been a question as to whether or not I inherited my XLH from her, since she has some of the symptoms of people with this disease/disorder. I just found out last week that some recent blood work she had indicates that she does NOT have XLH. That would make me a spontaneous case.

When my sister told me my mother’s blood test results over the phone last week, I said, “Wow. She doesn’t have XLH! I’m adopted.”

She laughed out loud and said, “You’re a fluke.” We used to ask our mother when we were children if we were adopted and made her show us our birth certificates. I don’t know why we were convinced we were adopted.

But now that I know I didn’t inherit a mutated X chromosome from her, I am worried! What if one day I’m temporarily disabled (like she is now) and I find out that I also did not inherit her sweet nature and pleasant personality? What if I also had a mutation on the attitude gene and become a total grouch and a whiner? I take 7 pills a day for my XLH but there’s no pill for grousing and whining. Seriously, though, I hope I can be like her. I’m sure I will be put to the test one day.

In the meantime, I try to daily count my blessings. I try to enjoy friends when I’m with them, enjoy my family when I see them, inhale the sweet gardenias that are blooming right now, look at the sky, the clouds, the stars, and take in all the beauty that I can.

I like to watch the hummingbirds feeding on my back deck and remind myself to savor the sweetness of life, whenever I can, wherever I can.

Copyright S.G. Hunter and Banjogrrldiaries, 2015

Changes

Things change. I don’t always do well with changes, especially when they affect my health. Those of you with XLH know that sometimes things can change rather quickly as we age. They certainly have for me. This past week, I had to address my sudden rise in blood pressure, which of course, doesn’t have anything to do with XLH and isn’t a side effect of the medications we take, but can simply be just one more thing we can get in middle age. For me, I halfway expected it, since both my parents have high blood pressure. I assumed I had just gotten another “genetic thing” to deal with.

So, I went to my family doctor, at the strong suggestion of my endocrinologist, to get her wise counsel on this problem. Her first thought is that my allergy medication, Claritin D-12, is the source of my problem. “If you were a smoker, I would tell you to stop smoking,” she said. “If you used crack cocaine, I’d tell you to stop using crack cocaine. But I am going to tell you–no more decongestants for your allergies!” If any of you readers live in or near the allergy capital of the world like I do, then you know that this kind of change is a little scary. I mean, I get some bad sinus headaches, and I’ll take my bone pain over a nauseating headache any day. Seriously. I will do almost anything to avoid those headaches.

But, I stopped taking all decongestants. That’s it, I’m done. She prescribed another allergy medication to take its place. We’ll see if it works. My blood pressure has gotten back to normal, so far. Maybe those parental genes haven’t kicked in yet. The good thing is that Claritin D-12 was a large pill, so now I have more room in my pillbox, and if you read my post from a couple weeks ago, you know that’s important to me. Therefore, I added the fish oil pill back into the box, since it is supposed to help with–yep–blood pressure.

Some changes are GOOD!

And, one of my favorite changes are the changes of colors around here as we transition from summer into fall. Yeah, I know, leaf mold bothers some people, but gosh, it sure is pretty. I will leave you with some photographs I have taken in the last two weeks, to celebrate some beautiful changes I enjoy. Happy autumn, friends!

Autumn at Mabry Mill

Behind Mabry Mill

Widow Falls at Stone Mountain in Elkin, NC

Copyright 2014, S.G. Hunter and Banjogrrldiaries, all rights reserved.

Point of View

I had an appointment with my endocrinologist last week that confirmed something that I have long suspected–I have an odd point of view about some things. Now, I know that I do have a unique point of view, literally, when it comes to my short vantage point. I mean, I have seen more belt buckles in my lifetime than most people, which is why I hate large parties with complete strangers.

What led him to conclude that my way of thinking was a unique sort of logic came about as a result of him confirming what medications I currently take. In August, he had prescribed two new meds for me, calcitriol and phospha 250, and that was going to add 5 pills per day to my pillbox. Those of you XLH-ers who take those meds know that while the calcitriol is small, the phospha 250 is what my mother would refer to as a “horse pill.” Those 3 phospha pills and 2 calcitriol pills per day simply did not fit in my pillbox. So, I guess I’m vain. When I realized they didn’t fit, the first thing that came to my mind was, “Something’s got to go,” not, “I need a bigger pillbox.” I decided that since my cholesterol pill is doing a great job of lowering my bad cholesterol, then I could probably eliminate the flax seed pill and the fish oil pill, both of which are quite large. I did that, problem solved. Quite honestly, I associate huge pill boxes with old age. I know, I know, that’s really not fair, but what can I say? I’m just not ready for the big pillbox that has four compartments for each day. I can’t bring myself to carry a pillbox that qualifies as “carry-on luggage.” I am vain, just between me and you.

Which leads me to reveal a secret dream that I’ve had for many years. I discussed this with a friend several years ago, when I bought my current pillbox, the one that seems to be shrinking. We felt like people in our generation would appreciate a more whimsical, fun pillbox. We both agreed that a pillbox that is more like a Pez dispenser would be way more cool to carry around and whip out at the restaurant than the boring ones that are currently available. And now that I have pills that are supposed to be taken with meals, the calcitriol and the phospha 250, I think it’s time to work on my invention.

Just remember: You first read about it here!

My current vintage collection consists of Woodstock Wednesday, Snoopy Sunday, Tasmanian Tuesday and Fred Friday. I need three more, for Monday, Thursday and Saturday. Suggestions?

Hmm…those doggone phospha pills are a little long. I guess I’ll have to stand them up or cut them in half. Still, though, way cooler than a box.

Copyright S. G. Hunter and Banjogrrldiaries, 2014

My Inspiration

Those of you who read my blog who have XLH know that our bones “act” older than we really are. Sometimes I feel like I’m aging at warp speed–not all the time, but sometimes. Of course, we’re all getting older if we’re fortunate enough to still be breathing. One of my dogs, Deacon the Jack Russell Terrier, has been a true inspiration for me in the last year. He’s an old guy–almost 14 years old by my estimation–and he inspires me every day. He is the most determined creature I know when it comes to carrying on with the daily routine of living. He makes sure he gets his walk and his food at the time he is supposed to get them. I can set my clock by him. If I try to stray outside the routine, he makes sure to get me back on track.

He is a rescue dog; his “owners” abandoned him in 2002 and he managed to “find” me. He was heartworm-positive and needed two rounds of treatment to recover. He also smelled so bad when I first took him in, that he had to sleep outside in a crate on the deck for the first night or two until whatever he had been eating off the streets had made its way out of his system. A bath could not rid him of his foul odor. I had another Jack Russell Terrier at the time, Pogo, who ruled the house (and me) and Deacon’s personality never really came out until Pogo died 2009. I discovered that Deacon had his own distinct personality and is very smart. Prior to that, I had my doubts. He lived in Pogo’s shadow. Come to think of it, I also lived in Pogo’s shadow!

Within the last year, I have been inspired by Deacon and how he deals with aging. It’s not always a graceful aging process with him–sometimes, he starts up the back steps and missteps and rolls back down–but he gets up, determined to make it back up. On those days when he’s moving slower than usual, he will ask for help. So, here’s my series of photos I have taken within the last year that I’ll call “Everything I ever learned about aging, I learned from Deacon.”

#1 Be open to new adventures, even if it involves riding in the back seat of a car.

 

 

#2 If possible, take time to sit outside in the sunshine.

 

#3 Observe the world around you. God’s creation can still amaze us, even when we’re older. Maybe we can’t see it or smell it as well as we used to, but we can still be amazed. And, of course, be on the lookout for squirrels.

 

#4 Some days, you’re just going to feel like crap. Be extra good to yourself on those days, maybe even throw on your party beads and wrap yourself up in a cheerful blanket.

 

#5 Try to make new friends, even if they’re very different from you. It might take some time, and you may want to chase them away at first, but you might end up liking them more than you thought you would!

 

#6 Accept offers of assistance. (This one is really hard for me!) Sometimes, we just need a little help getting up those steps, or reaching things on the top shelf at the grocery store or picking up something we’ve dropped. Let someone help you. It might make their day!

 

 

#7 Take naps. Aging can be tiring. Also, there is nothing wrong with having a favorite blanket, if that helps you to take a good nap.

 

 

#8 Relax. Try to get rid of the things in life that cause you tension. Meditate or pray. Take time to just be still and perhaps get a new perspective.

 

 

I love this little guy. I hope he will continue to mentor me through the aging process for a little while longer!

 

Copyright S.G. Hunter and Banjogrrldiaries, 2014. All Rights Reserved.

 

Winter-cise

This year in the South, during the months of January, February and March, we have been experiencing a thing that non-southerners call “Winter.” This happens to us about every 5-10 years, and of course, we feel sorry for ourselves and victimized by Mother Nature. She’s basically picking on us this year. Here in NC, we have seen a couple of snowstorms, ice storms, single digit temperatures, and I have personally seen more snow-covered lawn furniture photos posted on Facebook than I have ever seen before. I thought people did that because snow-covered lawn furniture is ironic; however, one friend told me that people use their lawn furniture to show off how much snow they got. Who knew? I still think they do it for the irony, and just don’t realize it.

So, my daily walks with the dogs have been greatly affected by this bad weather. In the mornings, I can hardly walk in perfect weather, never mind icy, snowy weather. Professorgrrl insists that I stay inside and not take the chance of going outside and falling. Being a person who likes to “chillax” as kids say, I don’t argue. However, this doesn’t help me keep my, ahem, girlish figure. (Neither does aging.)

Therefore, I devised my own indoor exercise plan. Since the house is all one level (yep, that’s on purpose) I decided to count how many steps (my steps, not a regular person’s steps) there are from the kitchen on one side of the house to the back bedroom on the other side of the house. There are about 50, making a round trip of 100 steps. I went online and found that around 2500-2600 steps equals one mile. (I guess that’s regular people’s steps.) I decided I would walk in the house on snowy and icy days to “get my exercise on.” The first day, I stopped at 600. That was before I discovered how many steps equal one mile. Then I knew I needed to push a little harder than 600 steps. So far, the most I’ve gone is 2000 before the left knee starts to complain loudly. Walking is one of the best things for helping my back, though.

And here’s the other benefit. The dogs are completely fascinated when I do this. Well, Tucker actually looks a little worried about the whole thing. He usually stays out of the way and watches from a perch on the recliner.

But Deacon, the old guy, thinks that this is the most exciting plan that I’ve ever come up with. He walks with me, and must think we’re going somewhere. Today, he even walked with me so long that he started panting and had to stop for water.

      

His happy attitude about my walking (he’s usually an Eeyore, so this is a nice change) encourages me to go for 2000 steps. I don’t know what he thinks will happen when I arrive, but it’s obviously something great.

Sometimes, it sure is nice to have a cheerleader.

Copyright 2014-2019, Banjogrrldiaries and S.G. Hunter

If a Tree Falls

“If a tree falls in a forest and no one is around to hear it, does it make a sound?”

Apparently this philosophical question has been batted around for decades, even hundreds of years. I have always thought it to be about the dumbest and most egocentric question I have ever heard. AS IF sound is completely dependent upon some human to hear it. AS IF nothing exists unless WE say it does. That’s an incredibly arrogant point of view. Just ask my dog, who hears the rumble of thunder long before I do. Sound is not dependent upon me.

However, speaking of trees, I have had some interesting trees in my camera viewfinder this summer. This tree pictured below houses some red-headed woodpeckers. Earlier in the spring when I saw it, though the tree appeared to be quite dead, it stood straight and tall. When I saw it again this summer, it looked as if it had been struck by lightning and had cracked and would have fallen to the ground, had it not been caught by a neighboring pine tree. It still houses the woodpeckers, though I’m sure they had to rearrange their nest now that it has a major case of lean-itis.

Leaning tree

Close-up of Red-headed woodpecker in the leaning tree

The other tree I have found this summer was standing quite tall and majestic in a winery vineyard. It appears to be dead, too. It strikes quite a pose as it stands completely alone in the vineyard, with no other trees nearby. You can see that there’s a bird perched in it, too.

When this vineyard tree falls one day, and I’m sure it will, I imagine that the sound will be something like a loud “thud” and it might even shake the ground when it hits, since there will be nothing to catch its fall. When the woodpecker tree fell sometime this late spring or early summer, I imagine that the sound it made was something like a “crack” followed by a slow “whoosh” as it fell over to rest in the arms of the pine tree nearby.

Why the difference? A scientist would have a different answer than the one I’m going to suggest. So would a sound technician. “Blah, blah, blah” is the sound I imagine coming out of their mouths.

The difference, and I’m sure you’ve guessed it already, is the woodpecker tree is surrounded by a community of other trees who caught it before it hit the ground. The landing was quite soft. Sadly, the lone vineyard tree has no other community of trees to provide a soft landing. It will fall hard.

As I get older, I have to work a little harder, I think, to make sure that I surround myself with a community of friends, family, and companions in my life’s journey. It’s very easy for me to sit at home and isolate myself in some way. At the end of the work day, I am tired, and so it takes a little extra effort to go out with friends or make plans with those I love. I have watched some older people isolate themselves, too. It takes energy to be with other people, let’s face it. Even extroverts get tired, or so I hear.

I think that some of my fellow XLH-ers, too, probably get tired from the amount of physical energy it takes to actually get out, if they are able. This probably applies to others who are becoming less-abled either due to aging or due to medical problems. One of my relatives, whom I love very much, is finally getting some help narrowing down her diagnosis of an auto-immune disease. She’s ready for whatever help she can get so that she can feel better. Right now, though, reaching out to those around her takes a lot of energy, but she is managing to do that. I think she understands the importance of community and I hope she’ll continue to reach out to me and others for support.

We’re all going to fall someday, in some way. We may fall emotionally, spiritually, morally, or mentally. We may even fall physically. (I usually have about one big “splat” per year, and thank goodness, I’ve already had mine this year so the rest of the year is looking pretty good.) I ask myself and invite you to ask yourself, “Have I surrounded myself with a community of others who might catch me or at least let me lean on them awhile?” I hope that I am doing that. I hope you are doing that. We need each other. Maybe physically getting out is impossible for you—I know that it is for some. Have you tried social media, like Facebook? Can you join an online support group? We XLH-ers have a wonderful group, found at xlhnetwork.org, and I know that many other support groups exist for people who need support for one thing or another. I have rarely commented in my group, but just reading the comments and emails of others makes me feel like I’m part of a community that cares and understands my particular medical condition. These days, there are support groups for all kinds of people, so it’s a lot easier to find folks with whom to connect. I even know some people who are not a part of a faith community that meets in a building somewhere because they’re disenchanted and disappointed with organized religion and yet they still meet regularly with like-minded friends who share their beliefs and desires to make the world a better place. Often we can just take a look around and find someone on whom we can lean.

Better yet, we can be that person who is close by, waiting to catch someone when they fall.

Copyright Banjogrrldiaries and S.G. Hunter, 2013-2018

I Can Dance!

I can dance! Okay, not really. I mean, I used to be able to cut a few moves when I was younger, since I am a musician, after all, but with this whole aging thing, plus the addition of having XLH, my moves are not very cool looking. I have very good rhythm from the waist up, but my lower half can’t bust any moves, and if I try, well, it’s not pretty. It leans more towards being comical. It’s a shame, too, since I do have good rhythm, and all.

I have recently figured out a way around that. I play in a music group and we now have a percussionist on occasion and when we play in retirement homes, we’ve been bringing out the handmade limberjack cat that I’ve had for probably 15 years or so. I became concerned that the cat was a little too special to cart around to these gigs, and decided that what we really needed was a limberjack dog. If you don’t know what a limberjack is, check out my video of Corky, the Limberjack Dog that I made.

http://www.youtube.com/watch?v=_zpa7KRIcRQ

Being somewhat obsessive in nature, I decided that I just couldn’t stop with making only one limberjack. So, I felt like I needed to make a Limberjack Chicken, to dance to “Cluck Old Hen.” Now, this chicken can REALLY bust a few moves! She throws in a little tap dancing, too. I admire her fancy footwork.

http://www.youtube.com/watch?v=U8A8plyxSBI

I have a confession to make, too. I have watched these videos several times. I have always loved watching people dance; even ballet thrills me. Maybe there’s a touch of envy, too, when I watch others dance, but really, I am just fascinated by the strength and agility that it takes to be a good dancer. I even like watching ballet. I think good dancing is really fun to watch. Watching my limberjacks dance on the videos gives me a similar feeling, with a little comedy thrown in, because I KNOW there’s no way any of God’s creatures could do what those crazy limberjack dolls do.

When I posted my limberjack dog and my limberjack chicken videos, I had a few friends who enjoyed them so much, they wanted me to make one for them. Now, I can tell you that this is not a business I want to start. You can buy a homemade limberjack for $30-$40 online, plus shipping, and I don’t know how in the world people can charge so LITTLE for making those things. Maybe I’m just slow in the shop—it did take a little longer for me, of course, since I had to draw my own designs, but still—it’s not a money-making operation!

So, here’s what I’m doing, instead. I am offering my detailed woodworking plans (with the drawing of the dog and the chicken) along with photographs so that you can make your own limberjack dog or chicken. Maybe you can’t dance due to physical challenges, but your hands still work, so you can give these a try. If you know a woodworker (they don’t have to be very advanced—I’m not!) then ask them to make one for you. Perhaps you know a physical therapist or someone who works in music therapy with kids or adults who can use one of these, too. I’m not charging for my plans but I am making a request: if you’re a woodworker, make two of them—one to keep and one to give to someone who might not otherwise be able to dance or who works with kids or adults with physical disabilities. I showed the videos to my physical therapist friend and she asked me to come do a “show” for some of the physically challenged kids that she works with. Kids love these. As a matter of fact, adults love these. Now, maybe you don’t know of someone that you can give one of these to. So, if you want my woodworking plans, then please consider making a minimum $5 donation (that’s about the cost of a set of easy woodworking plans these days) to XLH Network, which can be found via the internet at www.xlhnetwork.org. Many XLH-er’s have either never been able to dance or perhaps, like me, they know their dancing days are over, at least from the waist down. Your contribution is tax-deductible.

How to request the plans: I am hesitant to post my email address on a blog, due to the prevalence of spammers, so here’s my idea. You can send me your email address in a comment to this blog. I will copy the email address and send you the plans (in a Word document for the instructions and a pdf. file of the drawings) but will not “approve” your comment (if it has your email address in it) to be published in my blog. If you want to make a comment to my post, like, “Cool! Love the chicken!” then you can send that comment separately from your request with the email. The nice comment will be “approved” and shown on the blog, but I’m not going to let your email address be shown. Those spammers…they are annoying, aren’t they???

Just so you know—I am now working on a cow and a rooster. The music is still playing so why stop with two dancing limberjacks?

People first

The first week of January, someone told me that another hammered dulcimer player had moved to town. When I heard this news, I think I felt like some John Wayne-like cowboy– “This town ain’t big enough for the two of us. There’s only one paying St. Paddy’s Day gig in this town, and I don’t aim to let you have it…uh, yep.” Okay, that’s an exaggeration. Actually, what I realized was that I have gotten very lazy about learning new music. If you were to pull out an old Baptist hymnal, and name any familiar hymn from it, I could probably sit down and within a few minutes, work out an arrangement of that song on my hammered dulcimer and play it for you, even improvise a little bit too. When it comes to playing familiar tunes by ear, it is very easy for me to do. However, when it comes to sitting down and learning an unfamiliar tune written out in standard notation, it takes me much longer and my patience wears thin. Also, since the hammered dulcimer is an instrument that you have to play while looking at your hands and not a piece of music, then I feel like a bobble-head doll when attempting to learn written music. Look up at the music, look down at the hammered dulcimer to find the notes, look back up to the music, back down at the hammered dulcimer. It can be dizzying.

There has been one particular piece of music that I have wanted to learn for a long time, but I haven’t because I knew that I would have to sit down and WORK on it by reading and memorizing the music note for note. I have heard this piece several times over the years and every time I have heard it I have thought, “What IS that song? It’s so beautiful.” And every time I would check my CD to find the name of the song, I would see that it’s “Carolan’s Concerto.” The song is, to me, very beautiful, but not very memorable. Or maybe I should say it’s not very memorize-able. I have tried listening to it over and over before, to try and memorize the tune but it just did not stick in my head. Not like a Baptist hymn, anyway. So, I never bothered to attempt to learn it by the notes on the page. I just assumed that I would never be able to learn it because it didn’t make very much musical sense, in the same way that a song with words might.

“Carolan’s Concerto” is one of many songs written by Turlough O’Carolan in the late 1600’s and early 1700’s. So, now I’m going to take a detour here and tell you about him and something that does relate to the purpose of this blog. Several places that I have found with descriptions of Turlough O’Carolan, or Carolan, as he and his friends referred to him, describe him as a blind, Irish harpist. The noticeable thing about these descriptions is that he is labeled first as “blind.”  Actually, the most memorable thing about Carolan was that he was an outstanding and prolific composer. He was a better composer than a harpist, apparently. But, some of these descriptions that I have read put “blind” first.

There has been a movement for at least the last two decades in the world of disabilities to move away from adjective-first language (i.e., disabled person, handicapped person, blind person, deaf person, autistic person, learning-disabled person, etc.) and move toward people-first language (person with disabilities, person with visual or hearing impairment, person with autism, etc.) Apparently, this shift to people-first language has been controversial in some communities, because for some of these communities, what others may call their “disability” is for them a source of culture and pride (for example, in the deaf and visually-impaired communities.) However, the shift has been welcomed in some other communities, for example, those people who have mobility-related disabilities. Not everyone wants to be defined, for example, by what they cannot do. I can understand that. I don’t want to be defined as that “short, bowlegged limping woman.” However, if I were a criminal, that description would be very handy to the police who might be looking for me. I mean, after all, that is the first thing you might notice about me if you saw me out on the street. I guess the more polite thing to say about me if you were describing me would be “the woman with bowlegs, a limp and short stature,” to use people-first language. Hmm…actually, that’s not so great either, I suppose. If you see me out on the street, just ask me my name and strike up a conversation. Then you can describe me as “that woman who is nice and whose name I can’t remember.”

Anyway, there has been a lot written on people-first language. Just Google that phrase and you’ll find many articles. The ones that I read were all very interesting. I understand the reasoning behind it all. People should be people first and their “otherness” should be secondary to the obvious fact that they’re human beings created in the image of God first. I also understand that there are some communities whose “otherness” defines who they are as people. I had a good friend many years ago who was deaf and was thrilled to invite me into her world and her culture of deafness and even more thrilled when I asked her to tutor me in her language. Her identity as a deaf person was very important to her. And while I do have an identity as a person with XLH, it is certainly not the defining thing about me, and it probably isn’t for many folks in that particular community. We are people with many talents and gifts and many characteristics. Yes, we have all those physical traits that come with the territory of having XLH, and it has probably influenced who we’ve become as far as personality is concerned (compassionate comes to mind) but who we are certainly is not limited to our medical diagnosis. That goes for all people, too. We are not solely defined by our professions, our race, gender, age, etc. We do love categories in the U.S.A., but hopefully each of us is way more multi-faceted than some box we check on a survey or census form.

So, back to the hammered dulcimer and Carolan’s Concerto. I found an arrangement of the song that I like, started learning it and within three days, I was playing the song. I discovered something new about myself in the process. The song turned out, for me, to be very memorize-able as long as I didn’t just limit myself to learning it solely by ear. I realized that there was a kind of three-legged stool necessary for me to learn this song, each leg being equally important. In addition to listening, I had to read the written music and also pay extra close attention to the visual patterns of the piece as I played it on the dulcimer. Now I am working on getting the piece up to speed. I needed to take a multi-faceted approach to learn this song, rather than limit myself to trying to learn it solely by ear. I found it sort of ironic that I really had to rely so heavily on the visual aspects of learning it on my instrument rather than my usual aural approach, when it was a song written by a composer who was blind. I’m rather pleased to discover that I am not nearly as impatient as I had judged myself, either. So, now I’m thinking I need to learn one song each month this way. I need to not be so lazy, and push myself to learn something that may require more brain power (and discipline) than normal. I guess I had sort of subconsciously self-labeled myself as music-reading challenged or rather, a person with music-reading challenges. Thank you, Turlough O’Carolan for a beautiful song that is worth the extra work to learn it. Now, I will be ready for that St. Paddy’s day gig. Uh, yep.

Copyright 2013-2018, S.G. Hunter and Banjogrrldiaries

Mobility

I have been inspired to write about physical disabilities today. Unfortunately, the inspiration came from a neighbor who recently had a fall…in front of my house!

The day after Thanksgiving, my neighbor informed Professorgrrl that a couple weeks prior, she had tripped over an uneven section of the sidewalk in front of our house, late at night when she was walking her dog. Her fall landed her in the emergency room with cuts on her face and knees and a sprain in her ankle. She wanted Professorgrrl to know about this in case we wanted to call the city and let them know of the accident and that she had “taken photos” of the sidewalk where she fell. She said that in her hometown up north, if two people fell in a particular section of sidewalk, the city would take action to repair the sidewalk. But, two people have to get hurt before they will do anything…

Professorgrrl is VERY passionate when it comes to the subject of access for people with physical disabilities. She recently bought a car specifically because it would hold her, me, her mother and her mother’s walker at the same time, so that we could all go to church together. One of the reasons that she chose this particular church to attend is because the handicapped access was so easy…there is parking in front right at the door, a ramp, a place to park the walker and wide aisles in the sanctuary. She is also considering getting a new hair stylist for her mother because the handicapped entrance at the current beauty shop is through a narrow back door that leads into the break room where the hairstylists are hanging out between appointments and not real interested in moving their butts out of the way when “Mama” comes through with her walker. We’ve found another place that has a very nice ramp into the front of the building, and so we’re going to check it out. If this new stylist doesn’t cut “Mama’s” hair as well the stylist at the other shop, though, then we’ll keep taking her to the place with poor access, since for “Mama” beauty trumps convenience.

Professorgrrl is also sensitive about this because she knows that I have been known to stumble or fall when my legs or knees aren’t cooperating. And just as an aside, last year on one of our early morning dog-walks, I tripped over some uneven section of the sidewalk about this time of the year. I remember that because I was wearing a hoodie. I clearly remember the sidewalk rapidly advancing towards my face as I was falling forward when all of a sudden, I felt a hard pull on the neck of my hoodie and I stopped in mid-air, my face inches from the sidewalk. Professorgrrl had caught me by the hoodie mid-fall and stopped the fall before its potentially painful conclusion. That was the strangest feeling I have ever had. It was as if some angel had reached down from the heavens and rescued me from a LOT of pain. I am pretty sure I would have broken a knee or two or something, but fortunately, I did not.

Unfortunately for my neighbor, though, there was no one to catch her before she hit the ground one night a couple of weeks ago when she tripped on the sidewalk. And this has really made me think about how I am very unaware of some of these dangers for others who are unsuspecting because I am usually so extra careful, that I often pay excessive attention to every step I take, including those in front of the house. It had never really occurred to me to call the city to repair those sections, because I know they are there and know to be very careful. Another neighbor, who was curious as to why the city was spending so much time in front of my house, was not surprised when I told her they were replacing two sections of the sidewalk. She said she always warned her granddaughter to be careful and not run on the sidewalks on our block because they are so uneven.

So, I realized that because I now scrutinize every place where I’m about to place my feet, I have assumed that others do the same. That’s just not the case. They’ve not needed to think about whether or not they’ve lifted their feet high enough or if they can catch themselves and keep themselves from falling.

I wonder if, perhaps, most people, like my neighbor who fell, go along in life for 60 years or so and one day find out that they are not as sure-footed as they used to be. They may trip and almost fall, or they might actually fall and all of a sudden, they might think, “Oh. I didn’t see that thing that tripped me up.” Or, “Oh, I’m a little stiff today and I guess I didn’t step up high enough.” We all probably do it. One day you’re going along and can read size 8 font and then all of a sudden, one day you realize you need a size 18 font to read comfortably or, worse, reading glasses, a magnifier and a flashlight.

I have never been extremely sure-footed, and am getting less sure-footed with age, and as a result, it never occurred to me that perhaps I ought to look around and notice the sidewalks in my neighborhood that might trip SOMEONE ELSE up…someone who doesn’t realize how treacherous old sidewalks in an old neighborhood can be and hasn’t constantly monitored their every step before they take it, because they didn’t need to.

The GOOD news is, Professorgrrl called the city last Monday, and on Tuesday morning, they were out there at 9 AM pulling up five bad sections of sidewalk…two in front of my house and three in front of the church next door. On Wednesday, they had poured concrete into the forms they had made for the sections in front of the church. On Thursday, they came and poured black asphalt in the sections in front of my house. I was informed that this was something new the city was trying…where the sidewalk sections are crumbling and being raised up by tree roots (planted in the median by the city) they are pouring asphalt (which has more “give” to it than concrete, and won’t crack as much as concrete will as those tree roots continue to grow). This Monday morning, one week after the phone call, they sealed the asphalt sections and painted those sections to look like concrete. They also filled in dirt, planted grass seed and spread hay where they had dug around to replace the sections in front of the church building.

Sidewalk repairs- asphalt with sealant

I have to say I was impressed with the speed in which they made this repair. I guess nothing says “fix this ASAP” like “emergency room” and “took photos of the sidewalk.” The new sections look great. In fact, they look so good, I wish they had gone ahead and replaced the entire length of our property so it would all match. But, that’s the Martha Stewart side of me coming out. I thanked the guys last week for coming out so quickly but now I even feel inspired to call the city transportation department and thank them for making our little section of the block safer. In fact, I’m thinking that I may also encourage them to take a look around the neighborhood at several other spots that I have now noticed are actually as bad or worse than those sections they repaired in front of my house. I hate the thought of more neighbors having to take a fall before the city does something about this. I thought about all the neighbors on my block…the youngest one is 50 years old. We’re not getting any younger on this street and changes in our mobility will likely occur…hopefully we won’t become disabled, but likely we will become “less-abled” or “differently-abled.” We XLH-ers have perhaps gotten an early start in that department, but we’re certainly not alone. And there are many folks out there who have it much worse.

Looks like concrete…but it’s not. It’s painted asphalt. Martha Stewart would not approve.

So, I am now reminded that I need to look around and think more of those around me who might not be aging so gracefully. Professorgrrl’s mom often complains of back pain, something new that she has acquired in her senior years, and is convinced, to hear her tell it, that no one has suffered like she is suffering with her back pain. For her, this may be true, because SHE has never suffered like she is now suffering. It’s new to her, and it has come as a shock to her system. It’s not just the pain she feels…it’s the shock and sense that her body has now betrayed her in painful ways that she never imagined.

That’s just not the case for me. I have always imagined it. Something about wearing braces as a child gets into your psyche, I guess. I have always imagined that I would end up as physically challenged as I was when I wore those stiff metal and leather leg braces when I was four years old. That thought was reinforced to me when I was 22 years old, a recent college graduate, and my parents presented me with a life insurance policy after I had gotten my first job and said, “Sign these papers for this insurance policy. We think you should have it, because it has a disability clause should you ever become unable to work and support yourself.” The thought occurred to me that maybe they knew something I didn’t know. So, it has not especially been that huge of a deal to have some new pain or physical challenge, because I have always assumed that I had it coming.

But for Professorgrrl’s mom…it’s all new and a huge slap in the face! She is not aging very gracefully and it took a lot of convincing just to get her to start using a walker. Of course her dad also had a unique perspective on physical pain, which I have always found to be somewhat amusing. It was pretty much this: “When the doctor asks you to rate your pain on a scale of one to ten, always choose a nine or a ten. That way, you’ll get the most medication you can get for your money. Maybe even some free samples.” He loved a good bargain.

So, I have a new resolution for myself. When I take my morning walks, I need to pay attention and view the sidewalks from others’ points of view. Are they wheelchair accessible? (I have seen two neighbors over the years who used the sidewalks for a daily outing in their wheelchairs, one of them even walking her dog as she drove her electric wheelchair. Accessibility not only includes safe sidewalks, but there should not be any tree branches that would impede a person in a wheelchair.) Are they accessible for someone with a walker? (I’ve seen one elderly neighbor who used to take walks with his walker on our sidewalks.) Are they baby-stroller accessible? (One huge bump might send a baby flying out of there!) Can you walk on them at night safely? (That might include making sure all the street lamps have working bulbs. Seeing an uneven section of sidewalk before you walk over it may prevent an accidental fall.) These are all things I need to think about…things that will make my neighborhood “walking-friendly” and safe for my neighbors, most of whom I like.

Tucker the Beagle and Deacon the Jack Russell Terrier, would also add: “Is our path free of all things that might otherwise prevent my humans from safely walking me every single morning without fail, through rain, sleet or snow?”

We all know that they are only thinking of me and Professorgrrl and not themselves, of course.

Safety patrol

Copyright S.G. Hunter and Banjogrrldiaries, 2012-2017