Tag Archives: rare diseases


8 Apr

Long Exposure with old Pentax 35mm lens

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

6 Jan

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.

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




Ice Bucket Challenge

24 Aug

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.

World Rare Disease Day

28 Feb

Today is “World Rare Disease Day.” It is a day of recognition of all those who have rare diseases and/or advocate for those who have rare diseases and disorders. There are events held all over the world on the last day of February (which is the 29th in leap years) to educate and inform people and government agencies about the challenges faced by folks who have rare diseases and disorders. Today (and all this week) there have been fellow XLH patients and medical specialists who have advocated for us in Washington, D.C. Their message to representatives and senators has been this: “Without consistent funding of the National Institute of Health, research into rare diseases will not be done. We are losing our next generation of young scientists when budget cuts are made across the board without regard to the needs of long term research.” Their message is simple, and a message that helps many Americans, whether they have XLH, or some other rare disease or disorder.

The Global Genes project (globalgenes.org) declared today to be a day that you wear your favorite pair of jeans in honor of World Rare Disease Day. I wore my favorite pair. Actually, it’s the only pair I can still get my derriere into.

Selfie with Jeans

Funny thing about cell phones. They make my legs look really long from this angle.

As far as I know, no one noticed that I wore jeans. It is not unusual for me to wear jeans, so they didn’t know that I was very intentional about wearing them today. Wearing them did nothing to change the world, or bring about awareness on a large scale.

But wearing them did this for me: I thought about a friend of mine that works with children with physical challenges and disorders, several of whom likely have some type of rare disease or disorder. I was silently thankful for her and people like her who do this work, day in and day out. They are probably under-appreciated. It is a very physically and emotionally demanding job.

I thought of my parents, who had to deal with the shock of learning that their first born one-year-old daughter had some strange thing called “Vitamin D Resistant Rickets” and would require many visits to the doctor, blood tests, medication, braces and rude comments from people who told them I wasn’t getting enough milk. It would also mean that they would need help from the March of Dimes.

I thought of another friend of mine who is a research scientist and works tirelessly for cures and treatments for all sorts of things. People like him have made some remarkable progress in understanding and treating XLH and other even rarer disorders. Because of their passion and curiosity, there are people now whose quality of life is much better than it would have been just 50 years ago.

And finally, I thought about those in my own support group, xlhnetwork.org, who went to Washington, D.C. to advocate for ALL people who are affected by a rare disease or disorder. I am grateful for them.

I like the slogan for NORD (National Organization of Rare Disorders, rarediseases.org). According to NORD, there are 7000 rare diseases that affect 30 million Americans. And their slogan is this:

“Alone we are rare. Together we are strong.”

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

One Thing Leads to Another

23 Sep

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!

Mouse in dog food bin

“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.

The Loss of Innocence

3 Apr

Someone once told me, “The primary job of every parent is to protect the innocence of their children. Once a child loses their innocence, they can never get it back.”

I have thought of that statement many times since that moment she said this to me. I believe I was a very innocent, even naïve child. My first instinct was to trust people. I had no reason not to. For many of us, there is a gradual, or sometimes a traumatic loss of innocence. My belief that other people were kind and good fell away to the realization that people can be cruel and mean. Anyone who has ever felt different or outside the dominant group, whether it be for physical differences, mental, social or religious differences, knows that this loss of innocence can be painful and sad.

This week, I learned that one of my aunts had died. It was not unexpected. She wasn’t someone I was close to, but still, to this day, I hold on to my child-like view and opinion of her. I thought she was beautiful, with a movie-star like quality. The way she looked, walked, talked and carried herself was, to me, very glamorous and mysterious. I saw her last year for the first time in many, many years, and though I would have never recognized her by the way she looked, she still had the same voice and it evoked that child-like awe of her movie-star quality. She was like Ginger on Gilligan’s Island.

I might be the only person in the universe who thinks this about her. I have never, as an adult, heard one single nice thing about her. I have struggled to reconcile my childhood view of her with the things I learned about her as an adult. When I was a child I had no idea that she was such a disagreeable person, but apparently there are many stories out there to support these stated claims about her. I learned some new ones this week, including that her own husband, my uncle, called her “That Woman” and never used her name when he talked about her. I know he cared about her, though. No one chooses to live with someone for 40 years without having some shred of love or care for that person. So, I called up Uncle to express my condolences. To me, she was still my movie-star-like aunt, a child-like perception that I could never get rid of, even though I knew now she wasn’t ALL THAT.

“Uncle, I’m sorry to hear about Aunt T.W.’s passing.” (T.W. is short for “That Woman.”)

“Well, these things happen when you go to the hospital. You live longer if you stay at home. They kill you at the hospital. Or refer you to someone else.”

“I’m sorry I won’t be able to come to the funeral tomorrow. I have to go to the dentist in the morning to get a tooth pulled.”

“Oh. Is it loose?”

“Yes, loose and cracked.” (All you XLH’ers know what I’m talking about, I’m sure!)

“I pull my own teeth. The dentist will just take your money if you let them do it.”

“Do you use pliers?”

“No, I use my fingers. Last year I pulled out 4 loose ones, including a jaw tooth. What you do is work it a little bit, twisting and pulling. Then you might have to stop for a day or two, because it’s gonna hurt. Then, work on it some more and eventually, you can pull it out yourself. You do have to twist and pull on it to get it out. It may take a few days.”

“I think I’ll get my dentist to do it.”

“Well, you’ll need to rinse out your mouth about 3 times a day with warm salt water afterwards. The dentist won’t tell you THAT, because he’s going to want to give you some pills. But the warm salt water is all you need. About 3 times a day for a few days.”

“Okay. I’ll keep that in mind. And I’ll be thinking about you when I’m at the dentist tomorrow.”

“Okay, bye.”

“Uh, bye!”

I have to say, it was the most bizarre condolence conversation I’ve ever had. But he’s not one to express a lot of emotions, and so I think he was just being kind, recommending what I would need to do after the extraction. He’s done this kind of thing before. Last year, I saw Uncle and Aunt T. W. when I was on the way to the beach and he gave me a very stern warning to wear a hat and long sleeves or the sun would ruin my skin. He showed me his arms as proof of what damage the sun can do. Though he’s never had children, he told me all this in a very fatherly sort of way and with not very many teeth in his head. I’ve always liked him. He is definitely his own person and doesn’t care what others think of him. Missing teeth, disagreeable wife, and all.

This morning, as I was getting ready to go to the dentist, I realized that the loss of innocence can cause a lot of anxiety. There was a time when I did not know what it was like to have to go to the dentist so much, but now I dread it. And I don’t really know why. I have a great dentist who can shoot Novocain in gums and jaws and cheeks better than anybody in the world, I am sure. He just says I’m very tough, but I tell him that he is THE BEST. The anxiety about the extraction was way worse than the actual extraction itself. I think it’s because I have had some very painful dentistry experiences, none of which Dr. Tooth was a part of. So, I get anxious. It only takes one or two bad experiences to lose that Pollyanna view of things. I told him about my uncle’s self-extractions. Dr. Tooth was quite amused. The visit went quite well. He pulled the tooth out in one piece and said that I must have brought my lucky rabbit’s foot with me today, since it did not break in pieces. He handed me the tooth, after cleaning it, and suggested that I put it under my pillow for the Tooth Fairy. (Okay, losing my innocence about the Tooth Fairy was not painful and sad. I have no residual damage from finding out the truth about that.) I told him that I was sure that the amount the Tooth Fairy would leave would not cover my bill.

Now, I’m at home, with a mouth full of gauze pads. And, if you made it to the end of this post, then I will reward you with a photograph of my extracted tooth. Dr. Tooth derived great pleasure in pointing out the internal resorption, the cracks, and the bone loss, and he affirmed our decision to remove it now. I’m pretty sure the silver filling in it won’t pay for his bill, either.

Extracted Tooth

Photo of today’s extracted tooth. Good example of internal resorption, according to Dr. Tooth. Good example of why I must continue to work for a living, according to me.

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