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

I am Able with my Cane

I just read back over my most recent blog post and don’t even remember writing it and posting it. My friend calls this “anesthesia brain.”

I’m almost one month out from my back surgery and honestly, while I’ve made great improvements, I have moments of feeling like I have hit a plateau in my recovery. I suspect this is normal.

I am no longer taking muscle relaxers for the awful leg cramps I initially had in my right leg and foot. I am also taking less pain medications and now only over-the-counter ones. My steri-strips have fallen off the incision and the rash that the steri-strips caused has gone away. I am using a heating pad in the mornings for the discomfort in my right calf, but the pain is tolerable.

Some feeling has returned to my right foot but not enough for me to walk without my cane and definitely not enough to drive a car, which I haven’t been released by the doctor to do anyway. (For at least 6 weeks after this back surgery, I am not supposed to lift anything over 5 pounds, or bend or twist.) You never think about how much bending, twisting or lifting you do each day until someone tells you that you can’t do it!

I have had a few people tell me that I am standing up straighter than I have stood in years! (Hey, maybe I’ve even regained an inch…)

The reason why I feel like I have hit a plateau in my recovery is mostly because I’m anxious about regaining the full use of my right foot. I admitted to Professorgrrl the other night that this particular problem makes me feel very vulnerable, more vulnerable than I’ve ever felt before. (Well, except for maybe a colonoscopy…that’s pretty vulnerable…)

Not that I was ever a kick boxer, soccer player or anything like that but I am a musician and a I can’t even tap that right foot. Admittedly, though, I am primarily a left foot tapper but still…

Seriously, though, I told her that I felt like I would not even be able to quickly step back to the curb if a car suddenly came out of nowhere. We had just been to the mall for a mall walk and if you live in the U.S., then y’all know how crazy people drive in the mall parking lots. We had also gone to the grocery store and this particular grocery store parking lot is SCARY for even able-bodied people. (Shout out to the Cloverdale Harris Teeter!) I know that there are people who navigate through life like this every day and it has opened up my eyes as to how scary the prospect of just going somewhere can be for someone who has a disability. Do they get used to it after awhile? I need to ask my mother about this as she has been using a cane for several years. I think she must be very brave and way more adventurous than I am. I am inclined to stay at home. The fear of falling is less.

Speaking of canes, though, Professorgrrl bought me an ergonomic cane specifically for my left hand. It’s an extra short one, too, adjustable to the height I need. She says she bought it on Amazon, if any of my fellow XLH-ers are curious. I have quite the collection of canes and walking sticks now, in addition to other tools that I bought for my recovery, as recommended by the PT at the hospital…grabbers, picker-uppers, an extra long shoe horn in a happy shade of yellow and a contraption for putting on socks. I’m ready for a knee replacement or hip replacement when that day comes. It’s an investment into my future.

In my immediate future, however, I need to get ready for a visit from my sister today. Yay! She is fun and funny and we’ll have a great time and the day will go by too fast, I’m sure. I plan to take her out to eat tonight at a restaurant that serves THE best hamburgers, according to my hamburger-eating friends. I don’t eat hamburgers so I have to rely on their recommendations. My sister loves hamburgers and will insist, as she should, that her husband makes the best hamburgers, in the cast iron panini pan that I gave them, but she will at least get a taste of the second-best hamburger tonight.

Time to polish up my cane for a night out on the town.

 

Copyright 2019, S.G. Hunter and Banjogrrldiaries

Stories

When I was about 10 years old, my family (parents, younger sister and brother) went on one of our camping trips to Myrtle Beach in South Carolina. We always stayed at the Ponderosa campground there and this time was no different. We had a state-of-the-art pop-up camper called a Nimrod, a good solid Old Testament name which means “mighty hunter.” I always had fun at the Ponderosa Campground…each morning I would embark on a hunt for perfect seashells. This was back in the day when you could allow your children to walk on the beach by themselves. I always saved my money for these camping vacations so that I could go to the camp store and buy a souvenir for myself, usually a comic book. It’s always a good idea to have fine reading material at the beach, and I knew that even at the tender age of ten.

This particular trip was different, exciting and we all lived to tell about it. A water spout, which is basically a tornado on water, ripped through the campground one night while we were there. It was a very violent, windy and rainy storm that was scary for our parents as well as the three of us kids. My mother and father stood outside the rocking camper and held it down while the three of us stayed inside. I white knuckle clutched my red letter edition Holy Bible with the white leather cover and a zipper and prayed as hard as any ten year old could pray while my sister, 8 years old and my brother, 5 years old wailed. I don’t remember what promises and bargains I made with God that night, but I hope I’ve fulfilled them all. We survived, unscathed. No pine trees fell on us, and the stakes and poles of the add-a-room were not ripped out of the ground. We were camped up on a little knoll (in the cheaper campsites, not the more expensive ones on the beach front) and so the family with six kids in the big canvas tent down in the little valley below us got all the water. The adults were up to their knees in rainwater, but they survived, too. And the big “slide-slide” ( do y’all remember those?) down the beach from our campground was almost completely gone…nothing left but the steel frame. The expensive beach front campsites didn’t fare well, either.

Forever after, I told this exciting story to anyone who would listen. It had been the most exciting thing that had ever happened to me and I loved a good dramatic story where the good people survive. It was one of my favorite stories to tell to anyone who would listen.

A few years ago, at a family Christmas gathering with all the next generation kids gathered around, my little brother, the 5 year old in my story, told this 40+ year old story. And, remarkably, he told it from MY point of view! In his story, he was the kid clutching a bible and praying to God while his two older sisters cried. As he told my story, I said nothing. I just stared at him in total disbelief. He didn’t even own a bible at the age of 5 and if he had owned one, he couldn’t have read it since he wasn’t in school and we didn’t have kindergarten back then. (Well, only the rich kids went to kindergarten.) But, I remained silent and listened to him tell my story. I did not correct him.

I had a rare moment of realization instead. I had told that story so many times, it had become his story, too. The story became his memory of what he experienced as a five year old boy. My story was also his story. In essence, it was our story. A family story.

I have mixed feelings about all that. Having my story become a part of the “canon” of our family’s stories is sort of an honor. On the other hand, when does a story like this become YOUR story, one that you own and in which you are fully present? Rather than recounting my story, I would like to hear my brother tell this story from his point of view as a terrified five-year-old.

For years, I rarely mentioned to anyone my “story” of having XLH, how I felt as a child wearing braces or going to the doctor a lot, having my blood drawn, etc. I know that some of my friends were surprised that I even had a genetic “condition” when I “came out” a few years ago. Initially, many of my stories were stories of how others acted in my story…how my grandmother felt and how my parents felt about having a child or grandchild with XLH. It’s true, though, that their points of view are part of my story. But they’re not the whole story. As I have become more actively involved in taking care of myself as an adult with XLH, reading and writing about the disease, going to doctors and participating in clinical trials, it has become MY story. I own this now. I am not telling someone else’s story, but I am telling mine.

And my story has been a little bit of a wild ride and sometimes I feel like I’m a kid clutching my Holy Bible in a tiny little pop-up camper of a body while the winds rock it back and forth, wondering how this is all going to turn out. Wondering what promises and bargains I can make to God to insure my safety in the end. But through this, I have been surrounded by some kind souls who have prayed for me or helped hold down the fort (especially Professorgrrl!) or have just been quietly present, asking how I’m doing occasionally but not too much.

It is my story, yes, but I am not alone in it.

 

Copyright 2017, Banjogrrldiaries and S. G.  Hunter 

 

Happy New Year 2017

Hello to my subscribers and new readers of my blog! Happy New Year! I am snowed in right now, (and in the south that means there has been a prediction of snow, but not necessarily actual snow), so I thought I’d take a few minutes to check in with all y’all, especially my fellow XLH’ers and wish you all the best in 2017.

It’s been several months since I’ve written a post and I’ll give you an update. Last year, I was accepted into the adult drug trial for KRN-23. For those of you who aren’t familiar with the trial, it is a drug trial to study the effectiveness of the drug KRN-23 on children and adults with X-linked hypophosphatemia. I am in the third phase of the trials, which is for adults. During the first six months, I did not know if I was receiving the actual drug or a placebo…top secret! Only the pharmacist knew and whoever studied my lab results whenever my blood was drawn, which was (and is) quite a lot! During the second six months of the study, I began receiving the actual drug FOR SURE.

I can say this for certain, too…my broken foot, actually feet, are feeling much better. Oh sure, there are days when I stand too much and my feet hurt at the end of the day, but all in all, that is where I have felt the biggest difference. (I knew my left foot had a fracture, but I didn’t know about the other one until I was told by the study coordinator that the doctors were closely following both feet due to fractures. I thought my right foot just hurt a lot. Go figure.) I’ve also had an increase in energy. That’s been a good thing.

I’m very excited about the promising results for children from this drug, which is an injection, by the way. I sort of doubt that there are many XLH’ers who are afraid of needles, since we often get stuck, poked and prodded  from early on if we were “fortunate” enough to be diagnosed as children. I may dread the needles, depending on who’s getting ready to stick me, but I’m not afraid. Not to brag, but I do have great veins that are easy to find and stick a needle into.

The only side effect I seem to have experienced is restless legs. And what an aggravation it is! The study doctor, seeing that I was borderline anemic, suggested that I take an iron pill daily, since anemia can also cause restless legs. I have faithfully done that and my restless leg “syndrome” has not abated. In fact, I’ve decided that the day after I have my monthly injection, I may as well take the day off from work because it will be a sleepless night that first night. I feel like I could do kickboxing if I were younger, my legs are so restless.

And yes, I’ve tried the “Ivory soap in the bed” trick that some people swear by for restless leg syndrome, and it has not worked. I will say, though, when I tried it, my feet and legs smelled very nice in the mornings.

I’m crossing my fingers that this drug will get approved and will become available for XLH’ers soon. I’m worried about insurance, of course. Even though my former XLH treatment (a combination of calcitriol and phosphorous) was the ONLY valid treatment prior to this drug, my insurance refused to cover the calcitriol. So, who knows what insurance companies will say about this new treatment, which will, no doubt, be expensive. And who knows what will happen to those people who, perhaps for the first time, were able to get health insurance for their pre-existing condition due to the changes in the insurance laws. That all might change, too. There are some promising and also scary things on the horizon in 2017. I’m crossing my fingers. And praying especially for my “tribe,” i.e., other XLH’ers.

I have made no resolutions for this year. I can’t seem to follow through with those. But I do plan to continue doing the things I enjoy doing, like playing music and working and one of my newer hobbies, rescuing cast iron cookware from thrift shops and restoring them to usable condition, while extolling the virtues of Teflon-free cooking. I’ve baked about 7 Bundt cakes in the last two months in my restored cast iron Bundt pan and I might even bake one while I’m “snowed in” this weekend. Feel free to send me your favorite Bundt cake recipes. Which I will look at…if I don’t lose internet. And electricity.

Good thing I still have some leftover cake from the last one I baked, just in case!

 

Copyright 2017, S. G. Hunter and Banjogrlldiaries

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

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

 

 

 

Come Home Free

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!

Ice Bucket Challenge

I fear I must go on a mini-rant. I’m not sure if I’m ranting about Facebook or the ALS Ice Bucket Challenge videos that I am seeing daily.

At first, I was able to ignore the videos being posted for the ALS Ice Bucket Challenge. Why? Because people were posting celebrities throwing ice water on their heads and there was no mention in the video titles of why they were doing this. I just figured it was some gimmicky thing someone had come up with because they were celebrities, and not a fund raiser.

Then I saw some young people (under 25) posting videos of themselves stepping up to the challenge and tagging their friends to do the same. So I had to find out what, exactly, the challenge was.

I’m pretty sure the young people who were doing this did it because it was cute and fun, and, of course, to avoid the “penalty” of having to donate $100 to ALS (also known as Lou Gehrig’s Disease) if they didn’t take the “plunge” and dump ice water on their heads.

Let me be very clear: I am NOT against anyone donating money for research into this horrible rare disease. I know several people who have known someone with ALS, so I’m sure it is personal to many people who have had friends or relatives with ALS. I am glad they have raised so much money as a result of this challenge. (It’s in the millions of dollars, now.) I am also NOT against anyone raising awareness about any disease. Hopefully, they will inspire someone to give money or just look around a pay attention to people around them who may be suffering from some rare, or even common, disease or disorder.

However, I’d like for people to know that there are, according the National Organization for Rare Disorders (NORD) between 6,000 and 7,000 rare diseases and disorders that affect nearly 30,000,000 Americans. About 50% of them affect children. Very few of these rare diseases are named after celebrities or sports stars, so you probably have never heard of those nameless thousands of rare diseases that are not associated with a famous adult who developed a rare disease in their adulthood, after they had become famous. I daresay that the millions of children who are born with rare diseases probably won’t have the opportunity to grow up and become famous, and as a result, have their disease named after them.

I would like for people to look around them and pay attention. Do you want to give money to the ALS Association? Then please do. But look around you. There are people with rare and even not so rare disorders and diseases all around you! How about that friend whose parent has Alzheimer’s? How about that neighbor whose child has cerebral palsy? Give some money to the organizations that support them. Better yet, offer to support them in some tangible way. Let them know you’re thinking about them. Take them a meal. There are lots of families who have beloved members that require extra care, because they were born with or have acquired a disease or disorder. I have a friend with a chromosomal blood disorder that is even more rare than XLH, and it has some long complicated name that isn’t a celebrity’s name and doesn’t even have a catchy acronym. No one’s started a fundraiser to raise awareness of her disease or even teach people how to pronounce it. As I mentioned, there are over 30 MILLION people in this country with a rare disease. You likely know one of them. They also need your support.

Sure, if you also want to post a cute selfie of ice water being dumped on your head, then have at it. But can you not find something better to do with your time? Like writing TWO checks, instead of one. One to the ALS Association and the other to some other support organization that goes towards research into a cure or a treatment for people with another disease. And, as always, try to find out what percentage of your donation actually goes the cause you want to support. The higher the percentage, the better.

Of course, I am partial to the XLH Network (www.xlhnetwork.org) for donations. They are trying hard to raise awareness with the medical community about our disease. If you have XLH, then you likely know what it feels like to tell your new doctor or dentist that you have XLH and to hear that doctor or dentist respond, “Huh?”

And now you can tell them, “You know, that bone disease that the famous blogger, Banjogrrl, has.”

Just kidding.

Copyright S.G. Hunter and Banjogrrldiaries, 2014.

On being hyper-focused

I have enjoyed photography for many years. In college, as an art major, it was my best class and probably the one in which I learned the most. After college, I even bought darkroom equipment and would set it up from time to time to develop photos in my closet (because, that was the darkest room in the apartment where I lived.) Working and developing photos in a darkroom (back in the old days, when we used film) was the ultimate in control of how my photos turned out. I liked being able to control the outcome to the “nth” degree. Today, we have post-processing programs like Lightroom (which I use) and Photoshop to control the “development” of our digital photos in areas like white balance, color, contrast, and even sharpening the focus.

And I like that control, especially when it comes to focusing. I want my photos to be crispy and so sharp they will cut you like a knife.  When I view super-sharp photos on photography websites I think, “How did that photographer DO that???” I wonder what lens he/she used, what post-processing program he/she used and how in the WORLD they got their photo(s) so sharp. Then there are other times I look at photos that others have uploaded to their sites and think, “Why in the world would you ever post such an out-of-focus photo?” or, even worse, “Why in the world would you ever post 5 out-of-focus photos of the exact same subject, barely changing your view of the subject???” Unfortunately, I spend a lot of time taking many photos of the same subject and cannot find even one that is perfectly focused to my satisfaction. It makes me crazy. I know that glass lenses are going to produce sharper images and I know that prime lenses (rather than zoom lenses) are going to produce sharper images, and I also know that a tripod and remote shutter release will reduce camera shake, that the size of the  aperture makes a difference, etc. I know all that. I can be a little obsessive about a thing.

And then there are the Impressionists. Those painters seemed to be quite successful at creating beautiful art without worrying about being hyper-focused on their subjects. I try to remember this. I have even tried to reproduce this in my photography. Below is a photo of some mountain apples that I took recently. Taken with a glass prime lens and manually focused to be a sharp as possible.

This is as good as it gets with eyes that are 53 years old.

I had taken several shots of these apples. The above image is the only one I liked. Another similar shot was out-of-focus, so I decided to take the approach of the Impressionists—emphasize the out-of-focus quality of the photo to make it more painterly. Here’s what I got:

What the apples look like without my glasses. Monet surely had vision problems, too! I’m in good company.

I had figured out how to do this to my photos when I had a bird photo awhile back that was not as sharply focused as I wanted it. OH, I was SO disappointed! I really wanted the bird to be sharply focused, revealing every feather in fine detail, but alas, he was not. So, I played around in Lightroom, moved the clarity button all the way to the left, and pushed the out-of-focus quality of the photo to the extreme and ended up with a photo that is more painterly and, I think, pretty. Here it is:

This bird photo may even be better because it was out-of-focus. I’ll never know, though!

This whole obsession I have with sharp focus has reminded me of one thing. Sometimes I am too hyper-focused on myself. When you have some health issue, which for me is XLH, it’s easy to focus too much on yourself. I have seen elderly people do this. They sit around and discuss their medical issues as if nothing else matters. And maybe nothing else DOES matter to them. We do have to take care of ourselves, after all. But wow, I sure don’t want to be one of those people who talks about herself constantly. I know some people who are like that—they’re a little annoying. They think they’re the only ones who suffer. “Nobody knows what it’s like…” That’s true—I don’t know what it’s like to live in your body and you don’t know what it’s like to live in mine. I try to keep the issues I have around XLH to myself as much as possible, though, because there are people around who have things a whole lot worse than I do or than I ever will. I am not suffering. There are many people who do suffer with medical ailments, and mental and emotional ones, too.

In fact, I mostly feel blessed. I am thankful for each day that I can walk, see beauty in the world, hear birds singing, taste an autumn apple and smell garlic cooking on the stove. I would like to feel blessed and fortunate 100% of the time, but alas, occasionally I fall into thinking about myself too much, and hyper-focused on me. If only I could step back, move the clarity button over to become less focused on myself, and enjoy the impressionistic view of myself, that view being that overall, I am fortunate, blessed, lucky, and happy.

But as for being hyper-focused in my photography—well, that’s not going to change!

Love those fine feathers!

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

One Thing Leads to Another

For two nights in a row, about 3 weeks ago, I heard a familiar, although relatively rare, sound. It woke me up out of a dead sleep. I have a friend who has suggested that I’m “aurally defended.” I tried to google that but didn’t find that term on the internet. Basically, though, little sounds like a faucet dripping or a clock ticking, can keep me awake or drive me nuts. In this particular case, it led to a series of events.

In 2007, my dear, beloved cat, Hallie, died at the ripe old age of 17. Since that time, I’ve had, about every other year, a mouse (I prefer tiny rodent, since “mouse” sounds too endearing) to attempt occupation of my home. This does not go over well with me. I do not like rodents. They’re nasty and, unfortunately, they’re usually smart. Well, except this one pictured below who thought he’d found the pot of gold at the end of the rainbow when he discovered the dog food bin in the laundry room two years ago.  Unfortunately, his occupation plan did not provide a way for him to exit the pot of gold, since it was very tall and only about a third full. I won’t say how I disposed of him, just in case someone from PETA reads this. I will say, though, one should NEVER reach down into a dog food bin at 6 AM in the semi-dark without looking into the bin first. Feeling a creature try to “scamper” up your arm is not a good start to the day!

“Okay, I’ve found my way in. Now, how do I get back out of here???”

One thing led to another, and I purchased a dog food bin with a screw-on lid. There has never been another rodent take-over of the dog food container since then.

Anyway, the two nights of lost sleep led me to take matters into my own hands, since this new rodent was not scared off by my stomping and hitting the walls. And, now that my Jack Russell Terrier is hard of hearing, he’s not scaring off the rodent either. So, the next day, I tracked the tiny rodent to my bedroom closet. (They do leave calling cards, so to speak.) I pulled everything, and I mean everything, out of my closet, which, thankfully, is very small. It’s about 10” deep and 7’ long. Someone walled in a fireplace and chimney and created this closet a few decades ago. Back when the house was built, in 1904, people didn’t really need closets, because people didn’t collect junk and amass a fortune in clothes and shoes like we Americans tend to do now. So,the closet is about the depth of a chimney.

The closet, looking to the left.

The closet, looking to the right towards chimney.

The emptying of my closet lead to the discovery of several large rodent size holes that had never been filled in. I had never done anything to this closet, including painting it, so, this led to my conviction that a complete renovation was in order. And it really needed it. I even had to do some light construction in there, because whoever did the work before did a half-uh, a half-mouse job. I filled in all the holes with caulk, after discovering that someone many years ago had tried stuffing a few of these holes with tinfoil and even this thing I found in there:

I’m not sure what this is. Perhaps it is a stove valve regulator, as one friend suggested.

 I sawed off some old nails that were poking through the walls. I primed the walls, the shelves and the chimney with some very toxic primer. But I was prepared.

Wearing my mask and Sponge Bob hat. Poor Sponge Bob. He has dental issues, too.

It actually came in handy that I am a little person. I could squeeze into this tiny space and reach in there to paint those end walls and shelves fairly easily. I don’t think a tall or big person could have done this job. Well, they would have griped about it, probably. So, one coat of primer and two coats of leftover “Moroccan Moon” paint from another paint job and the closet was well on its way to completion.

“Moroccan Moon” paint on a brush. If I could do it all over again, I’d become a namer of paint colors.

The next thing to deal with was the floor. As you can see in an earlier photo, it needed work. I was not about to refinish it, either. But being from a long line of borderline hoarders, I did happen to have some leftover “ipe” wood flooring that had been used when I had the front porch rebuilt several years ago. It was perfect for the job, doesn’t need refinishing, and I didn’t have to go buy something else. My kind of project! So, the tiny rodent led to another thing…not just the restoration of my closet, but using up stuff like paint and wood that I already had.

How many closets have exotic hardwood floors?

Oftentimes when we use that phrase, “one thing leads to another” it is used in a negative sense. There’s a pop song out with this idiom as the title, and when I read the lyrics, it looked pretty bleak to me. When you google “one thing leads to another idiom” then you can see several examples in the free dictionary reference that are pretty negative, too. Although the tiny rodent in the house was clearly a negative experience in my mind, the outcome has been positive I think. And this one thing leads me to mention another thing—

There have been some exciting developments in the world of XLH research. A hormone called “FGF23” has been found to be partly responsible for our phosphate wasting disorder, and there has been a “discovery” of a compound (name “KRN23”) that is being tested to be used to reduce the amount of FGF23 hormone that is wreaking havoc on us. The Phase 3 trials will hopefully begin soon. This will not likely be of a lot of help to adults with XLH, from what I have read, because it cannot undo the damage that has already been done, such as the excessive calcifications. But, what GREAT news for children and the parents of those children! We have mice (I’m okay with referring to these laboratory rodents as “mice” since they’re being helpful) to thank for this development, since they have been used in the research, but we mostly have some wonderful research scientists who have spent their lives looking for cures and treatments for human diseases. I have a friend who is a research scientist in medicine and God bless him, because it takes a very long time in many cases, to have a breakthrough in your research. But one thing can lead to another, and in this case, many tests and trials, and many mice and humans willing to be in drug trials, have led to possibly a huge breakthrough in a rare disease. I am honestly amazed that some people have spent their lives researching something so rare, too, because they will not likely be mentioned in any textbook, unless they also find the cure for the common cold. My hat’s off to them.

Yep, one thing leads to another. And that can be a really positive thing. And as for my tiny rodent—well, he is going to lead me to have to empty out another closet because in my zeal to caulk all the holes in my closet, I apparently caulked them while he was in instead of out of the house, and he’s found another closet, a bigger one, that he likes!

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

I Can Dance, Part II

 

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