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How do I thank thee? Let me count the ways.

29 Feb

Hello fellow XLH-ers and other followers of my blog. Writing another post has been on my “to-do” list, but life has gotten in the way!

I’ve been inspired to write about saying “thank you.” It seems I’ve had many opportunities to say that two-word phrase recently. I’ve come to realize that saying thank you works for many situations, when other words fail me. There are three specific ways that I’ve found it to be useful.

#1 The Sarcastic “Thank you.”

#2 The Genuine “Thank you.”

#3 The “I’m-At-a-Loss-For-Other-Words Thank you.”

The #1 Thank you, sarcastic version, I haven’t had to use much. A possible use for it might be when someone says to you, “Wow, you look like $&*@ today.” Your response of “thank you” should be accompanied by an appropriate facial expression, like a smirk or that little head bobble that teenage girls are so good at doing. I’m still working on the head bobble.

The #2 Thank you, the “genuine thank you,” is one  I hope I use regularly. I hope I live a life of genuine thankfulness. Recently I had occasion to use it regarding my XLH.

An acquaintance stopped me at a social event and asked, in the most southern “bless your heart” drawl you can imagine, “Banjogrrl, may I ask you a personal question?”

“Sure,” I said. “This should be interesting,” I thought.

She asked, “Does it pain you to walk?”

I wish I could spell out “pain” the way she said it, but it was at least two syllables and stretched out as only we southerners can do it and used as a verb. (Think Julia Sugarbaker from the TV show “Designing Women,” although I think Julia was not nearly as sweet as my acquaintance is. But Julia’s southern drawl was great.)

“Yes,” I said, wondering if I need to work on my facial expressions a little more while walking. Less grimace, less tension or something, I guess.

“Well, it pains me to walk, too and I know a little how you feel, although we probably have different health problems.”

Awkward silence. “Thank you for asking,” I said to her. I was genuinely touched by her reaching out to connect with me. We didn’t go into what our health problems are, but it was a mutually understood connection.

I’ve had a couple occasions to use the #3 “I’m-At-a-Total-Loss-For-Other-Words Thank you.”

One was when another acquaintance out of the blue and with other people around pulled something out of her bag, handed it to me and said, “Have you ever tried grape seed extract? I’ve been watching you and I think this would help you. I take these pills every day and now my hands aren’t as stiff. You should try these.” Along with the bottle of grape seed extract was a brochure explaining the benefits of said product.

I didn’t know what to say to her except, “Thank you.” There were other people around and it wasn’t a good time to do the 30-second speech about X-linked Hypophosphatemia and why I might not move through this world very gracefully. I didn’t open the  bottle of pills and knew I needed to return them. A couple weeks later when she asked if I had tried them yet (maybe there was no visual improvement in my walking?) I told her, “It’s complicated but no, I have not used them and I’m returning them to you to give to someone else who might benefit from these.” Let me tell you, if grape seed extract actually helped the 1 in 20,000 people in the world who have XLH, then the pharmacies would have those pills flying off the shelves.

The other time I used the “I’m at a Total Loss for Words so I’ll Say Thank You Instead” was when I was chatting with an acquaintance as I was about to get into my car. She asked me, while following me around to the passenger side so that I could put something in my front passenger seat, “Banjogrrl, you seem to be moving a bit slower these days. Are you having trouble with your back?”

Once again, not willing to give the 30-second XLH explanation speech and as I made my way back around to the driver’s side, I responded with “I do have some bone issues.” Part of the reason for being non-specific with people is that it requires a certain level of vulnerability and frankly, I was ready to sit down in my car and go home and just not interested in being vulnerable in that moment.

So, as I was getting into the driver’s seat, she leaned in, placed a hand on my shoulder and exclaimed in all earnestness, “Be healed in the name of Jesus!”

!!!

I looked up at her sincere face and said, “Thank you,” because this time, I really DIDN’T know what else to say. We said our goodbyes and then I drove away.

Sigh. As I drove away, I started to feel aggravated. What I wish I could have said was,  “I was born with a rare disease called x-linked hypophosphatemia. I have noticeable physical characteristics of XLH and then some that aren’t so noticeable. I was diagnosed when I was ONE YEAR OLD. I’m pretty sure my parents, both of whom are alive and are people of faith, have been praying for me for the last FIFTY-FOUR AND ONE HALF YEARS. What makes you think that God would listen to you and your quick prayer of healing and not my parents?”

But of course, I didn’t say that. I said, “Thank you” because I was at a total loss of words. Well, at a loss of words that I could have said without my voice rising to a fever pitch.

Later, I recounted these three incidents which happened in a span of a few weeks to Professorgrrl and asked her, “Am I looking that bad lately? Have I gotten worse and don’t even realize it?” I mean, I know I’m not improving and healing. The kind of healing that woman prayed for is not going to happen. Healing with a bottle of pills isn’t going to happen either.

How could it? Do some people think I could wake up one morning and be 6″ taller, have all my teeth and a perfectly straight back and legs? If I did wake up like that, I wouldn’t even be me. Being the shortest and “bowleggedest” kid in the school is part of who I am. My world view has been shaped by XLH. Life is not black and white through my eyes. God does not heal or fix children with genetic disorders. God left it to the people to do that. And so far, the people can’t fix this but only a certain amount. If you want to pray for us, pray that we can cope. Pray that we will keep our sense of humor. Pray that we can find doctors and dentists who are interested in taking us on as patients. Pray that we can get health insurance after the Affordable Care Act gets repealed. Pray that the insurance companies will start covering ALL of our medications. Pray that the new drug that is now being tested will help us. Pray that parents will teach their children that it’s wrong to make fun of other children who are different. Pray, pray, pray.

And for those honest, real prayers, I say, “Thank you.” (And that’s a genuine thank you.)

By the way, today is Rare Disease Day. Go hug someone with a rare disease or who is a caregiver of someone with a rare disease.

Copyright  S.G. Hunter, 2016

 

 

 

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Come Home Free

29 Oct

Hello fellow XLH-ers!

As a follow up to my September post, the book that I co-wrote, “Come Home Free,” by Hunter Crainshaw, is ON SALE today and tomorrow for .99, Kindle Edition only. Clara, who is one of the main characters in the book, has XLH.

While writing the book, we debated a little bit about whether to include a character with XLH, since it is something that I have. But a writing seminar we attended convinced us it would be okay to do that because, according to the writer who spoke at the seminar, most readers enjoy learning new things. So, it’s okay to “write what you know” if it’s a subject that others might not know about. We XLH-ers know that XLH is a subject that hardly anyone knows anything about, including most doctors. This confirmed our decision to have Clara be a person with XLH.

If you’re a fan of Southern fiction, you might enjoy this book, available through Amazon. You can do a search of “Come Home Free” by Hunter Crainshaw.

Or, you can follow this link: Come Home Free.

Thanks for reading!

Happy belated 25th birthday, ADA!

1 Aug

Looking toward Main - Copy

Last Sunday, July 26, 2015, was the 25th birthday of the Americans with Disabilities Act. President George H. W. Bush signed this law into effect on July 26th, 1990 as a civil rights bill for Americans with disabilities. The law is many pages long, but if you’d like to read about it, go to ada.gov.

Of course, passing laws does not necessarily make people better citizens. I still see people break the speed limit and run through stop signs on a daily basis. The ADA, though, has made people more aware of folks who have both physical and mental disabilities. Thank goodness for that! Physically disabled people now have better and easier access to public places. Congress listed in their “findings” several things which inspired them to create this law. For example, they found that:  discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services.

The bill was/is an attempt to eliminate these kinds of discrimination, among other things. You can legislate some things, but you cannot legislate kindness. I know someone, for example, who had to threaten to stop taking her mother to a particular beauty salon because of the lack of kindness showed to her mother when she would roll in on her walker to the salon. The beauty salon conformed to the ADA standards by having a nice ramp up to the back door, with adequate parking for those with a handicap sign. Unfortunately, the hair stylists there like to gather out by the back door to smoke and eat their lunches, and were not very accommodating as she tried to get through the heavy door, roll through the tiny break room and into the salon area. One time the way was blocked by several boxes of hair products in the hallway, making it too narrow to pass through with a walker. My friend felt that the best approach to handle this was not to “call the authorities” and report this, using the “ADA” word. Instead, she told her mother’s hair stylist who was furious and as far as I know, this has not been a problem since then.  But you still can’t legislate kindness and manners. Somebody’s mama and/or daddy has to teach their children some manners.

I want to focus on the “recreation” part of this finding (quoted above) by Congress. In December 2012, I wrote to my neighborhood association’s president and asked him if they (the board) could approach our city about doing some sidewalk repairs. Oh yes, he replied, the board had discussed this and had plans to work on this and would remind the person who was in charge of this. I never heard another word, but I did continue to wonder if anything would come of it.

Sidewalk in front of yellow house - Copy

There are several places in the neighborhood where tree roots in the medians have lifted up the sidewalk sections so high that a wheelchair or baby stroller would not go over it safely. If you were not paying attention, or had limited eyesight or it was at night, it would be very easy to trip over these sections. They’re unsafe.

When I was reminded this week that the ADA was celebrating its 25th birthday, I decided I would skip the middleman (the neighborhood association) and contact the city myself. Professorgrrl found that contact person for me online. (Thanks, Professorgrrl!)

I wrote the man in charge of city sidewalks, not expecting an answer any time soon. Oh me of little faith! He wrote back less than 12 hours later and asked me to send him the addresses of those places where the sidewalks are dangerous. A couple days later, I sent him a list of 8 places. And yesterday, less than two weeks later, he had been out and marked the places with cones and had the crews pull up the sidewalk sections for their “tree man” to take a look and see if anything can be done with those roots that are pushing up the sidewalks. How’s that for progress? Skip the middleman, I say.

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Now, I will admit, a case could be made that my asking for these sidewalks to be repaired was a bit self-serving. There is certainly some truth in that. In 2012, though, when I initially wrote the neighborhood board president, it was because an able-bodied neighbor tripped over an uneven sidewalk section and became temporarily NOT able-bodied. And, when I wrote the board in 2012, I had no idea that almost three years later, I would be walking “nordic style” due to a fractured foot. Because of my own experiences, I felt an even more urgent need to seek some help from the city. As they say, “there but by the grace of God, go I.” It can happen to anybody. One day you’re walking, the next day you’re not. Or in my case, one day you’re waddling, the next day, you’re waddling more. In an instant, someone’s ability can change. I am lucky, in that I’ve always known deep inside of my potential for disability, that would come over a period of time. For my neighbor who tripped on a sidewalk, it was an instant. For my mother, who fell three months ago and popped her artificial hip out of joint, it was an instant. A painful instant. She is still recovering. I don’t wish this on anyone of my neighbors, even the ones who irritate me! (And, incidentally, my mother tripped over an uneven sidewalk many years ago and broke her knee. She was much younger and more able-bodied then, but accidents do happen, even to the young and able-bodied.)

All this has reminded me. Sometimes, you only have to ask. And you might get lucky and receive!

Copyright 2015, Banjogrrldiaries

If a Tree Falls

5 Aug

“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.

Woodpecker peering into tree hole

Leaning tree

Woodpecker peering into tree hole

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.

Like a tree planted by the grape vines

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, Part II

5 Jul

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I have finally finished the Limberjack Cow that I started making, as I mentioned at the end of my June 9th post, “I Can Dance!” She was truly a challenge, too. I felt like an orthopedic surgeon, with all the issues I faced making her. Legs fell off, knees got stuck, and she also suffered a broken knee from vigorous dancing. She had a genetic disorder, though…there was a weird little knot or something in part of the wood of that particular area of one of her lower legs. I repaired it, with wood glue, CA glue and a paper splint. So far, so good. Too bad repairs on human knees aren’t that easy! Medacow paid for it…ha!

I’ve been inspired to name her “Dolly” because of her signature song, “Buffalo Gals,” an American folk song that is over 100 years old!

I danced with a dolly with a hole in her stocking, and her feet kept a-rocking and her knees kept a-knocking

Oh I danced with a dolly with a hole in her stocking and we danced by the light of the moon.

So, Dolly the Limberjack Cow, now shares the spotlight with Charlie (short for Charlotte) the Limberjack Chicken and Corky the Limberjack Dog. She’s a little imperfect and though her maker (me) intended for her to be perfect, the materials used were imperfect, so, I got a cow with a few physical challenges. Her dancing is not very good, either. We have a strong connection, Dolly and I.

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

It brings to mind a quote that I saw someone share on Facebook last week.

Everything you do is based on choices you make. It’s not your parents, your past relationships, your job, the economy, the weather, an argument or your age that is to blame. You and only you are responsible for every decision and choice you make. Period [sic]

First of all, I thought it was funny that the quote had “Period” at the end of it, but no period after the word “Period.” Yes, I am the grammar police.

Second, it sent me into a mini-rant. I’m small, so everything I do is mini-sized. Professorgrrl wisely told me that I take these kinds of posts and quotes way too seriously. She said that most people on FB don’t consider who is “in the room” when they make broad generalizations in their posts. In person, this person might have thought more carefully about what she was saying if she saw that there was a physically disabled person in the room, or a mentally challenged person in the room, i.e., people who had no choices in things they were born with that do influence everything they do, and every choice they make if they do have any choices at all. And had she said it with me actually in the room, I wouldn’t have been able to keep my mouth shut and would have probably said some things that I regret. But since she posted it on FB, I was able to contain myself and not make any comments. So far, anyway.

I am certainly not suggesting that most people have no choices in their lives. But the quote insinuates that we have many choices, and it’s up to us to make the right decision based on our array of choices. It’s a very America-centric view of decision-making. Here in the U.S.A. we have almost too many choices about many things. If you don’t believe me, go to WalMart to buy an apple or look up directions to anywhere on Google Maps. (I always get three routes to choose from.) However, I have been to countries where people were born into abject poverty and have no choices about most things, even survival. Are they “responsible for every decision and choice” they make? In a situation like that, making a decision or choice might be either an impossibility or a luxury. The same goes with mentally challenged people or many physically challenged or disabled people. If a person gets rheumatoid arthritis, did they choose to become disabled? Or collect disability payments IF they’re available? And the person with a genetic disorder, like XLH…what choices does that person or the parents of that child have? Pretty limited, if you ask me. In the real world, there are many people who do not have a wide selection of choices from which to make the “right” decision.

I had an interesting conversation with my father yesterday, as a matter of fact, regarding choices. As he has gotten older, he asks me more and more questions like, “How are your legs? How are your knees? How are your hips?” He’s worried about me, and I think worried about my future. Yesterday, he said he wondered if he and my mother had done enough for me when I was diagnosed as a one-year-old child. My mother has told me that the orthopedist told her to exercise my legs everyday and she did, she says. I wore leg braces when I was four and wore them for about a year. I took a high dosage of Vitamin D (50,000 I.U.’s daily) until puberty. My father, in our conversation yesterday, said he has often wondered if they could have chosen another doctor who possibly could have done more. He was even tearful when he said this to me. I reassured him that they did the best they could do, and from what I can tell, that was the standard treatment in the early 1960’s. That is definitely not the treatment today, because we now have discovered so much more about this genetic disorder. But in the early ’60’s, my parents had two choices…get the only treatment for me that was currently available or do nothing. And, to be good parents, they really had one and only one choice, and one doctor in town who even knew anything about this disorder. So, they chose to follow that doctor’s orders. In a lighter moment in the conversation, he said that it was so very hard for him to see me in those leg braces, but that I had quickly learned how “to fly” in those things and he was amazed by that. I had no choice as a child but to follow my parents’ orders…wear the braces. Eventually, I also chose to not let them inhibit me from running, too. (His statement reminded me of that moment in the move Forest Gump, where he runs right out of his leg braces…that was my favorite part of the whole movie!)

Yes, sometimes our choices are limited, and for some people, there might not even be the luxury of any choice. We are not all dealt the same hand, that’s for sure. Even in the XLH community, there are some who have very debilitating and extremely painful manifestations of the disorder and others, like me, who can still get around unaided and get by with less meds. My heart goes out to those whose choices are so limited or even non-existent and I think of them when I read those inane posts on FB. Sometimes I just want to say to those FB friends, “Look around and consider who else is in the room when you say that.” It may be a limberjack cow like me with a bad knee who can’t dance very well, or worse, someone who can’t dance at all.

So, who is “in my room”? I’d like to honor some people who have had few, if any, choices about their circumstances in life and who have made the best decisions for themselves that they could, given the limited choices they have had. A young friend of mine with cognitive disabilities comes to mind. She’s made some terrible decisions in her life and I am not sure she has been able to understand that she could have made different decisions that would have made her life easier. I do not hold her completely responsible for her bad decisions, either, given her inability to carefully think through things before she made these poor decisions. My dear uncle, whose body is racked with pain from arthritis and gout and several other medical problems, has shrunk from 5’10” down to 5’2″. Whenever the doctors or nurses have asked him, “Do you drink?” he has answered wryly, “Not yet.” The “choice” to suffer was not made by him, but passed down through his genetic code. His current choices are extremely limited–try to live or not. I would not judge him for whatever decision he made regarding his quality of life. He certainly didn’t ask for this circumstance. There are other people “in my room.” I honor and admire and respect them for doing the best they could with their lot in life and the limited choices they have had. I certainly honor both my parents for making the only choice available to them in regards to my treatment. There was only one decision to make–to be a good parent. No other choices were possible for good, loving parents. And, as it turned out, administering 50,000 I.U.’s of Vitamin D a day until puberty was NOT the correct treatment and some have even suggested it was a really bad idea. But it was the early ’60’s and there were no other “standard” treatments at that time. Are my parents “responsible” for making that decision? I certainly don’t think so!

Who is in your room?

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

I Can Dance!

9 Jun

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

14 Jan

ImageThe 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