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

How my distrust of modern western medicine changed

Lately, I’ve been hearing about and reading a lot of personal stories as to why folks refuse to get a COVID-19 vaccine. They have a distrust of western medicine, the government and the pharmaceutical industry. They feel like the vaccine was rushed through to get it on the “market.” They don’t trust the the truth of what the side effects are. They think that western medicine is just a bunch of untested or poisonous chemicals that someone has whipped up to placate the masses. Maybe they think the vaccines are just another way that the government has control over our bodies. So many reasons…I’m sure you’ve heard even more.

I understand the mistrust. Being born in 1960 and diagnosed as a toddler with “Vitamin D-resistant Rickets,” I was basically a guinea pig for doctors who really didn’t understand this rare genetic disease and know how to treat it. I wore leg braces as a way to force my legs into a straighter shape while taking massive doses of Vitamin D and maybe some kind of “preparation” (as my mother called it) that might have contained phosphorus. The orthopedist used x-rays of my legs to “prove” that the meds were working and I was growing properly. I was encouraged (read: expected) to practice walking so that I could “walk properly, like a young lady is supposed to walk.” I never reached a “normal” height. My legs never did “straighten up.”

The truth is, none of these doctors had the slightest clue as to what caused my rare phosphorus-wasting bone disease. But they did the best they could with the knowledge they had at the time to help me “overcome” it, not really understanding that there is no cure for it and it’s a disease that lasts a lifetime.

Fast forward several decades and we now know the cause and even which gene the mutation is on that causes this disease. We don’t have a cure, but we have a treatment that is especially effective for children, so that they (hopefully, if properly diagnosed early enough) can grow to a more “normal” height, with straighter legs, fewer dental problems, less bone pain, fewer insufficiency fractures, fewer surgeries, hopefully less hearing loss and overall, less damage to the bones and joints as they age. (The enthesopathy is real!) Another side benefit? Less emotional trauma when you’re growing up, less depression and higher self esteem because let’s face it…a child who “walks funny” or has trouble in PE classes and is much shorter than their classmates faces almost daily rejection, stares from others and sometimes outright discrimination.

Frankly, my feelings about Western medicine have changed from “great distrust and disappointment“ to “amazement.”

Why? I was part of the clinical drug trial, Phase 3, for Crysvita/Burosumab, the current best treatment for children and adults with X-linked Hypophosphatemia. This drug received approval from the FDA in 2018, two years into the trial I was in. I continued a third year and now I’m in the 10-year follow up trial to monitor its effects on me. Approximately 120 people WORLDWIDE were in this phase 3 trial. There was a phase 1 and a phase 2 for the trial, with similar numbers of people in those.

You know, you can only test rats for so long before you have to find out if a drug works on people. People have to volunteer* to be “guinea pigs” to find out if the drug is effective. I can say without a doubt that this drug IS helping children significantly and it is also helping adults (less significantly, in my opinion, due to the fact that by the time we get to adulthood, this disease has already done a lot of irreparable damage.) The Phase 3 drug trial I did for burosumab was the second drug trial I had participated in for XLH. The other drug trial was at Yale and with a smaller group of people, I think. Phase 3 is the final phase which can lead to approval by the FDA.

Basically, several dozen people WORLDWIDE helped to get Crysvita approved and available, which took several years. That’s not very many people but again, in the U.S. alone, there are only somewhere between 13,332 and 16,665 people who have XLH.** The pharmaceutical company had to rely on the testing of relatively few people to get this drug approved for a small group of rare individuals. But believe me, their testing was very rigorous!

So, what about these COVID-19 vaccines? According to my research on the Pfizer, Moderna and Johnson & Johnson websites, a total of 114,990 people participated in the Phase 3 trials for their vaccines. (Compare that with 120 people worldwide in my phase 3 trial for Crysvita.) Let that sink in. There were 114,990 who decided it was worth the risk of unknown side effects to find a vaccine for COVID-19 to help YOU, to help ME, survive this highly transmissible and potentially deadly disease. Those participants took the risk of being a “guinea pig” of the vaccine so that we could basically stay out of the hospital, should we contract COVID-19.

I’d like to give a shout out to those 114,990 people. 👏🏼👏🏾👏🏻👏🏿👏🏽 THANK YOU!

In the U. S. A., “we the people” (from our constitution) means “WE are the government.” 

Well, “WE” are also the pharmaceutical “industry” and the FDA and the medical “industry.” We who volunteer* to be in drug trials so that we can help our community are the ones that you insult or disparage when you refuse to take the vaccine because “the government put a tracking device in it” or “we don’t really know the true side effects” or “if I take it, that means I have no faith in God.” Really? You think that little of us? You question our faith, question our ability to report side effects, question our common sense and think we’re gullible?

That hurts. We who participate in clinical drug trials thought we were helping people, our families, our communities, our friends when we put our safety on the line for OUR COLLECTIVE HEALTH.

It’s sad that there is such a distrust in not only the government and the medical and pharmaceutical “industries” but also in WE THE PEOPLE (your neighbors, your friends, your family) who help get all sorts of drugs approved for you. I was in drug trials because I hoped beyond hope that my test drug, if approved, would help children not to have the same experience I had and have as a person with XLH. I like to think that the 114,990 people who participated in the drug trials for the COVID-19 vaccine also did it for others…the elderly, the people with chronic diseases, the people with poor immune systems, the people who can’t afford to miss work, the healthy people who thought they were invulnerable, the children, the medical people who are overwhelmed with caring for COVID-19 patients. 

Modern western medicine isn’t perfect. Neither is my immune system, which has failed me many times. We do have to be proactive in caring for ourselves, not taxing our immune system, but building it up so that we have the best tools for combating disease. The vaccine is another tool to help with that. It’s not 100% effective in keeping you well, but it’s over 90% effective in keeping you out of the hospital. I’m all for that. I have enough medical bills as it is and don’t need more. I’ll continue to eat well, exercise, take some supplements, wear a mask, wash my hands but also with the added tool in my arsenal of COVID-19 fighting tools…

The COVID-19 vaccine.

*Volunteering in clinical drug trials often includes some types of monetary compensation for your transportation, possible overnight stays and some of your time. It’s no way to make a living but there is usually some financial compensation so that you don’t personally incur any expenses that aren’t reimbursed.

**It is estimated that one in 20,000 to 25,000 births are people with XLH. As of today, the U.S. population is 333,294,290. That is how I arrived at the approximate number of people with XLH in the U.S.

Copyright 2021 S.G. Hunter and Banjogrrldiaries

Check-in

I see it’s been 6 months since I last blogged. Too many thoughts to write down, I think. And here we are, still in a pandemic. Are there any XLH-ers reading this? How are you doing in the midst of the pandemic?

I’ve had some pretty big days recently. Quarantining has not been a problem for me most days. I think I’ve thrived. A couple weeks ago, though, I had a telemed visit with my family physician. So, I showered, blow-dried (blew-dried?) my hair, put on a clean, unwrinkled shirt and showed up for my appointment on time, in the comfort of my own home. The following week, I had another telemed visit, did the same thing except put on a different colored shirt this time. All went well.

THEN, last week was huge. I had to go see an orthopedist about a new problem. This was an in-person visit, too. So, I showered, blow-dried my hair, put on a clean unwrinkled shirt AND, get this, applied deodorant, brushed my teeth and put on pants and shoes. It was exhausting. I forgot how long it takes for me to go anywhere. I’m just glad I remembered how to drive. And could find my wallet. And keys. And mask.

But here’s the thing that was really memorable about my visit to the orthopedic clinic. I waltzed through the front door…well, not really waltzed, more like a slow, rickety amble, got my check-in ticket, sat down, checked in, sat down again, got called back, sat down again, saw the nurse, then the doctor, got sent to x-rays, sat down again…and here’s where it got interesting. Two folks (young married couple) came into the x-ray waiting room UNMASKED. There are signs ALL OVER that clinic about the mask requirement and here were 2 people, UNMASKED, in the small waiting room. Hello? Anybody paying attention to this?

Please note: COSTCO is now more strict with its mask policy than my orthopedic clinic run by a major hospital that has an infectious disease expert that has been interviewed on our local news almost EVERY DAY since mid-March. Costco now says that if you have some medical condition that prevents you from wearing a cloth face covering, then you are required to wear a plastic shield instead. No mask or shield, no entry. 

But my orthopedic clinic? Come on in unmasked, the air is fine. Well, fine for you, but maybe not for me.

WHAT? 

Dear Costco- I need a new orthopedic clinic. Please consider opening one up in your store. 

After my appointment was over (with a few more “sit downs and waiting”), I walked towards the exit/entrance and noticed a table with 2 women sitting in the entranceway, checking temperatures. They weren’t even there went I entered the building an hour earlier. Um…wonder if they were there when the un-masked couple entered earlier?

Most of my medical people send me an email survey to rate my experience before I can even get home from my appointment. Not this place. No survey, no care summary, no nothing. So now, it’s going to require extra effort to complain about their low standards. What a trip.

I can only shake my head. Best of health to my little community of readers out there. Take care and WEAR YOUR MASK. You don’t need this COVID-19.

Happy Thanksgiving!

2 pumpkins, 2 felted pumpkins, 1 felted squash, 2 wood carved pumpkin figures by me. Well, except for the real pumpkins.

Copyright 2020, Banjogrrldiaries and S. G. Hunter

The De-evolution of Civilization

As a person born with a genetic bone disease, x-linked hypophosphatemia, I have been thinking a lot about the COVID-19 pandemic and so have many of my fellow XLH-ers. Are we at a higher risk because of our disease or do our drug treatments compromise our immune systems? The doctors are saying, “No… folks with XLH are no more likely to get COVID-19 or suffer severe consequences if they do get it.”

I don’t disagree with them but my response is, “I don’t need the trouble.” Having XLH already complicates our lives enough so honestly, I don’t want to even catch a cold, let alone the flu or COVID-19. Do I want additional body aches? Um, no.

People’s responses to the pandemic have been fascinating, too. We can shelter in place and protect ourselves and others to “flatten the curve” or we can go out in the world, catch it, leading to “herd immunity” (unless you’re one of the unfortunate ones who die from it, you know, survival of the fittest and all), etc. We can wear a mask or not wear a mask.

We can go to a house of worship online or in our cars or by God, we can go in person and sit close together because no one is going to trample on MY rights to go to church. (And that last thing I find really funny because I have actually “gone to” more church (online, of course) since this all started in March than I had gone to in the last 6 months. And I’ve even gone to a variety of services online, not just one denomination. It’s felt like I’ve had an “all-you-can-eat” buffet of church services in the last 2 months. I don’t understand the complainers who feel like their religious freedoms are being taken away. We’ve actually had MORE.)

The conversations with my mother about this pandemic have also been interesting and have lead me to read some about the history of polio. My mother, who is 83 years old, remembers when she was a little girl not getting to go to the lake with her brothers because of polio outbreaks. I did a little research on that. Polio was considered a “summer disease.” Public pools would close, camps would close, in order to keep it from spreading. Children were the most vulnerable, as you may already know. And to quote an article from NPR in 2012 about polio in the United States, “In 1952 alone, nearly 60,000 children were infected with the virus; thousands were paralyzed, and more than 3,000 died. Hospitals set up special units with iron lung machines to keep polio victims alive. Rich kids as well as poor were left paralyzed.” Franklin D. Roosevelt, who contracted polio as an adult, founded the March Of Dimes in 1938, primarily to combat polio. (A side note: As an XLH patient in the early 1960’s, I was helped by the March of Dimes.)

Interestingly enough, not very many people were infected or died from polio. The first major outbreak in the U. S. A. was in 1894, so the disease wasn’t new. And if they got it and lived, they might “only” be paralyzed. Why did people get so whipped up about it? They could have waited for “herd immunity.” Instead, scientists got to work on finding a VACCINE. People kept their children home and away from public places in the summer, since polio seemed to rear its ugly head then.

I have watched with fascination the protests going on in my state (NC) and others of people marching to their state capitols to protest all the restrictions (business closures, mask wearing, social/physical distancing, etc.). I have wondered how we got to this point in our country from 1950 to 2020. In 1950, people were willing to be inconvenienced in order to keep their community’s children safe from polio. In 2020, Americans will not tolerate being inconvenienced.

Now, I am not trying to simplify all this because it IS complicated. Number one, people will do about anything for their children. If COVID-19 affected only children, similar to polio affecting primarily children, then people now in 2020 would go overboard with protecting their babies. Mask wearing, hand washing, social/physical distancing, cancellation of schools and church would be, OF COURSE, the thing we would do without question. Children are valuable.

BUT, COVID-19 primarily affects (and kills) old people and, well, MeMaw lived a good life and it’s unfortunate, but it was almost her time to go anyway and the government could sure use that social security money she won’t be needing anymore. Of course no one is saying this out loud, but they’re sure living like it’s true. “Forget these restrictions, let’s go see Grandma.” And Grandma isn’t going to say no, because, well, she grew up in a generation where women never said no because that’s impolite and well, she misses her grandkids.

And of course, we do need our society working because there are bills to pay and rich landlords certainly aren’t going to give their tenants a break on their rent and our health insurance system IS, AFTER ALL, based on either full-time employment or being married to someone who has full-time employment. So, I get it, it’s complicated.

But with all this protesting, I still have to wonder, at what point did we, my fellow Americans, devolve to caring more about our individual rights than we care about our neighbors? I see this regularly, too. People who won’t wear masks because, it’s an inconvenience. People who get up in your personal space because they really don’t care or the rules don’t apply to them. People who believe in conspiracy theories because they think a certain political party is out to get them. People who think they know more than doctors and scientists. (That last one just slays me.) People who follow the One who said, “Love your neighbors as you love yourselves,” but stop short at hand washing, mask wearing, staying at home, sneezing into your elbow or whatever.

Now, I must confess. I am an introvert. I’m doing really well with staying home. My car misses me. I have sat out on my front porch for long periods of time and watched people go by. I have been very productive in my workshop for the past couple months. If we were getting graded for staying at home, I would get an A++. I realize that the extroverts are not doing well with this. This is possibly hell for them.

So, what did extroverted people do in 1918 when they were told to stay at home to keep their community safe from the Spanish flu? What did they do prior to 1955 (first polio vaccine) when they had to keep their children at home? I don’t know. They didn’t have FaceTime or Zoom to help them get through it, so maybe they wrote letters. A major inconvenience to them, of course, but they were willing to do it for the safety of their community because for some reason, back then, THE HEALTH AND SAFETY OF THEIR NEIGHBORS WAS MORE IMPORTANT THAN THE RIGHTS AND CONVENIENCES OF THE INDIVIDUAL.

What a concept. I think Jesus referred to this concept as “love.”

 

Copyright Banjogrrldiaries, 2020. All rights reserved.

COVID-19 and Rare diseases

Last night, I did not sleep very well. I had lots of things rolling through my brain, including the most recent CDC recommendation regarding the COVID-19 pandemic, that is, the recommendation not to hold gatherings of 50 or more people for the next EIGHT WEEKS. That puts us into May. Wow, that’s a long time. I’m really feeling sorry for the extroverts in my life.

What has really been subconsciously bugging me for several days now is this: who are the people who are poo-pooing the CDC recommendations, claiming this is all a hoax or saying that people are worried and paranoid about this virus for no reason, that it’s all over-blown and of course, media driven? Who are these people? I know some of them personally and I just can’t figure out the common denominator. They’re not all political conservatives or all liberals or even all libertarians. They’re not all religious conservatives or all religious liberals or all non-religious people. Who are these folks who are not taking this virus seriously and think the media has blown the medical professionals’ dire warnings way out of proportion?

Last night, while tossing and turning, I think I figured out who these people AREN’T. So, at least I’ve narrowed it down.

Worldwide, 3.5-5.9% of people live with a rare disease. As far as I can tell, not one person I know with a rare disease, like those of us with XLH, is shouting that all the news around the COVID-19 pandemic is a bunch of media driven hype or some kind of hoax. And why is that? 

We who have a rare disease generally have a very high regard for medical science and for people who work in medical care. When medical care professionals say  “hey, we’re dealing with a very serious community health issue,” we actually respect what they’re saying.

Also, when you have a rare disease and feel like crap most of the time, even when you’re on some sort of medical treatment, we certainly don’t want to risk getting something that makes us feel worse than we already feel. If the CDC says, “avoid crowds of 50 or more,” I’m more likely to say, “for me, that means avoid crowds of 5 or more so dear family, now is not a good time to visit, can you do FaceTime?” Additionally, when the CDC says “wash your hands a lot,” I think to myself, “can I possibly wash my hands more than I already do because I already border on OCD hand-washing, just to avoid getting a simple cold.”

As I think about it, the people whom I have observed as being poo-poo-ers of the CDC and the doctors and the media who reports what they’re saying are people who, generally speaking, rarely go to the doctor because they’re lucky enough to be in good health and some of them think they know more than doctors anyway. 

I love medical people. They’re often on the front lines and they especially are right now with this pandemic. 

I love the research scientists. They developed Crysvita, the best treatment that XLH-ers have ever had. They will also develop treatments and, eventually, a vaccine for COVID-19.

I respect these folks in the medical field who are warning us, for our own individual and collective good to “flatten the curve,” and practice “social distancing” and wash our hands constantly to protect not only the most vulnerable in our society but also to reduce the burden this is going to put on our health care system and the people who work in it.

I also love my fellow rare disease friends (especially the XLH-ers). They totally get why I might opt out of a large gathering in favor of keeping myself from getting a little cold or COVID-19. (Yeah, I don’t want a cold either.) It’s nice when people “get you.”

Sorry, healthy friends. I won’t be showing up to your gatherings and I will likely hunker down and keep myself well which in turn, may keep you well. Maybe you’ll thank me later.

Copyright 2020, Banjogrrldiaries and S.G. Hunter. All rights reserved.

 

Defining the “un-definable”

Sitka spruce Spurtles made from antique grand piano soundboards. Great for cast iron cooking but do not rest your spurtle on a hot skillet unless you like the smell of burning Sitka spruce. Ask me how I know.

In my last post, I mentioned that since my back surgery in June, I had been unable to drive.

Well, I can drive now. Watch out, though. Just kidding. I restarted physical therapy, as I mentioned previously. It was the right thing to do but I did make a small discovery. The first day after my first PT appointment, I got on the floor to do some back exercises that the PT had assigned me and after I did them, I sat up and as I began to stand up, I realized I COULD NOT FEEL MY LEGS OR FEET.

Sound familiar? Yep, that’s the very thing that led me to need back surgery. I won’t bore you with the details, but basically, no more back exercises for me and the nurse practitioner prescribed another round of prednisone to calm down those mad back nerves.

I continued with the physical therapy but we focused on balance and upper strength exercises. I had 6 weeks of physical therapy, once per week and we ended with some exercises on the “machines” that my PT assured me I could do at my YWCA.

Unfortunately, my YWCA doesn’t have ANY exercise machines that work for a person who is 4’10”-ish. Sigh. It’s always something.

BUT, I am driving now. I can feel enough with my right foot to press the gas pedal and I use my left foot for the brake. My ankle gets tired and achy but I don’t plan on driving on a trip that takes several hours. My dad assures me that race car drivers use their left feet for braking and since I’m ambidextrous, I guess my ambidexterity applies to my feet, too. I’ve had no issues.

At my follow-up appointment with my neurosurgeon in September, my neurosurgeon, based on the incident with my numbness in August and my description of what I do for my job (piano tuning), recommended that I not go back to tuning pianos for awhile. He said this nerve problem might take as long as a year to recover. He asked me if I needed a “note” for my boss.

Well, no, since I am my own boss and have been for almost 30 years as owner of my piano service business.

I have had several folks suggest that I need to apply for disability. Which leads me to ask,  what is the definition of “disabled”?

I can drive. I can walk…slowly…but I’m not in a hurry. I can dress, bathe and feed myself. I can communicate. I still can’t operate a VCR, but thank goodness those are gone.

I can understand why there’s a push to use “people first” language, such as using “person with disabilities” rather than a “disabled person.” Even a person with a disability has some kind of ability, just not necessarily one that can lead to full-time employment. Just saying that someone is “disabled” does not consider the whole person.

I decided yesterday, while working in my woodworking shop, that I’m not disabled.

However, I also realized yesterday that I am probably UNEMPLOYABLE.

I have worked for almost 30 years as the sole proprietor of my piano service business. Almost half my life has been as a self-employed person who specialized in one thing…tuning and repairing stringed keyboard instruments (pianos, harpsichords, clavichords.) I have spent the last almost 30 years learning and doing pretty much one thing. I also earned a BFA in Art (Painting and Printmaking) which also makes me unemployable! Ha!

Last year, when one of my feet suffered an insufficiency fracture, I was able to take 6 weeks off and subcontract out my tunings. Also last year, when I ended up with a chipped elbow, couldn’t straighten my arm and needed a cortisone shot and 10 days of no tuning at the busiest time of a piano tuner’s year (Christmas), once again, I was able to subcontract out my work.

What employer wants that kind of employee?

“Sorry, but my foot broke…again.” “Sorry, but I need back surgery.” “Did I mention in my job interview that I would need more than usual amounts of time off for bone issues and doctors’ appointments? I’ve got this thing called XLH.”

So, my business is still “open” but the short woman who used to tune the pianos has been replaced with a tallish man. People ask if he’s as good as I am and I say, “Yes, but he’s not as cute.”

I’m still tuning harpsichords and clavichords, though. I’m up to 10 harpsichord clients and 2 clavichord clients. And all the church harpsichordists (3) want them tuned at Christmas for Handel’s Messiah. That’s a day’s worth of work.

So,  I’ve made it my goal for the next year to not even consider applying for disability. I am trying to cobble together a job of keeping my business open and subcontracting out all of the piano work, teaching music (I have 4 students currently), doing harpsichord and clavichord work and my newest creative enterprise, making wooden kitchen utensils out of antique Sitka spruce piano soundboards that I have salvaged from a piano rebuilder. I have sold quite a few and  I will save money at Christmas because ALL of my family members will be receiving these for Christmas. And birthdays.

As my dad has always said, “It’s not how much you earn…it’s how much you save that counts.”

Cream cheese, anyone? Served up with a Sitka spruce spreader made from antique grand piano soundboards.

Copyright 2019, S. G. Hunter and Banjogrrldiaries. All rights reserved.

 

 

 

 

Coolest Grandma Ever

 

The photo that I have included in this post is a picture of my maternal grandmother’s 1968 Ford Mustang. My grandmother, who was born in 1900 and never got a driver’s license, bought it brand new when she decided in the 1960’s that she wasn’t going to inconvenience anyone else when she needed a ride to the grocery store or doctor’s office or church. When my grandfather died in 1957, grandma lost her husband and her ride. I remember as a child when we went to visit her, she’d always insist that my Mama drive us around town in her car, so we would use up her gas and not Mama’s gas. We rode in style, but probably didn’t realize it!

My brother now owns this car and it still turns heads when he drives it.

As I mentioned in a previous post, I am not able to drive since my back surgery, due to now having “drop foot” in my right foot caused by the surgery. I’m restarting physical therapy tomorrow, at the recommendation of my nurse practitioner, whom I saw in my 6-week follow-up appointment about 10 days ago. Hopefully, the PT will speed up the healing process of those nerves and it won’t take 6 months to heal, as he suggested it might.

Now, I’m thinking I need to buy a really cool car to bribe people to take me to my PT appointments. “Hey, you can drive my Toyota tomorrow if you’ll take me to physical therapy!” doesn’t sound enticing. But, “You can drive my Triumph Spitfire convertible (or Porsche or Corvette or Austin Healy) if you’ll take me to my doctor’s appointment!” might guarantee a line of people willing to drive me places. Heck, even an El Camino would get some interest in my age group.

Hmm…maybe my brother will loan me Grandma’s ‘Stang for a few months…

Copyright 2019 Banjogrrldiaries and S. G. Hunter. All Rights Reserved.

 

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

Recovery

I survived my lumbar surgery last Friday! And even better, for the first time in my life I did not get nauseous and sick after having anesthesia. I cannot tell you how happy that makes me. I’ve had 4 surgeries in my life that required general anesthesia and this anesthesia team got it right!

They did keep me overnight, though, because the surgery caused a new problem. I now have numbness and weakness in my right foot which I did not have before. One of the surgeons said that most likely the manipulation of those spinal nerves irritated and inflamed the nerves that lead to that area. He also said that the extent of the spinal stenosis was worse than they had anticipated and they had to move those nerves around a lot to get those bone fragments out of there.

As a result, I am now outfitted with a lightweight walker and some various tools to help me get dressed without too much human help.

I cannot express enough how grateful I feel about my family and friends, who surrounded me with love, encouragement and food before, during and after the surgery. I’m overwhelmed by all the love I have received. Everyday, people are bombarded by the media with stories of how awful people are and can be. The media needs to come visit me and let me introduce them to my family, friends and even the hospital staff and medical team. They have all been so kind and there is no way I could repay all the kindness and love I have received. They truly make the world (especially my world) a better place.

I know that many of you have had multiple surgeries related to XLH. I have only had 3. I’m sure there will be more as I age, but if I still have the same people surrounding me, I will be fine and won’t be nearly as afraid as I was when I went in on Friday. (Not sure why this particular surgery scared me so, but it did. Professorgrrl said I should NOT have watched the video that the hospital sent to inform me of all the possible side effects of anesthesia. I admit, I couldn’t watch it all the way through! Too terrifying!)

Monday afternoon, a physical therapist came by the house to assess my living situation and offer suggestions to make my life easier and a little more accessible during this time of recovery and getting my mobility and independence back. I know my dogs will be glad to see that walker go away because they don’t like it one bit, even though I’ve assured them there is no motor on it! (But what a great idea…a walker that doubles as a vacuum cleaner…)

So, that’s my update. I’m not a medical person, but I do hope the Crysvita will help speed up healing as it did with my fractured foot last summer. I’m crossing my fingers, anyway. I’m already feeling so much less pain than I did right after the surgery that I’m making a plan to begin tapering off the stronger pain meds, relying on the guidance of my PT, of course. In fact, I have friends who are getting ready to have a baby and Professorgrrl has warned me not to start knitting baby clothes until I’m completely off the narcotics or there is no telling what kind of baby outfit I’ll come up with. Could be scary!

This is Bella, part of my home recovery team.

 

Copyright 2019, Banjogrrldiaries and S.G. Hunter 

Happy XLH Awareness Day!

“Your back is a mess. But I guess you knew that, didn’t you?”

I love it when a doctor is brutally honest. “I had a feeling. Don’t sugar coat it, doctor.”

“I can’t sugar coat this. Look here.” My new neurologist showed me the results of my MRI. I felt like I was looking into a very dark cave. As he moved along my spinal canal, what was light (showing where the nerves and spinal fluid were inside the canal), became almost instantly dark (meaning the canal was almost closed off).

I’m no MRI or x-Ray technician, but even I could see this was a problem and could explain the numbness and tingling in my legs and feet.

He followed up with, “We’ve got to fix this. You need surgery.”

I said, “What would happen if I didn’t have surgery?” I always like to explore other options that don’t involve hospitals, anesthesia, sharp surgical instruments and large medical bills.

“You would become dysfunctional as far as walking is concerned.”

When I relayed this conversation to a friend of mine, at this point she said, “What about tap dancing? Would you still be able to tap dance?” We both laughed at this thought, me with my “mess of a back” and she, sporting her new hip brace, which hopefully will keep her hip replacement from popping out of its socket for a THIRD time! She and I have, in the last few years, bonded over our bone woes. Her wry sense of humor has been a ray of sunlight. We’re both at a point of laughing to keep from crying, I think.

Losing my ability to walk has, for many years, been one of my greatest fears. Somewhere deep inside inside me there still resides that little girl who had to wear leg braces for a year, and I suppose the braces have left an indelible mark on my psyche. The doctor got my attention when he told me I could lose my ability to walk. I felt no need to seek a second opinion, after seeing those MRI results. Even my untrained eye can spot a “mess.”

So, as I write this on the eve on my back surgery, I’m thinking about my fellow XLH-ers who have been through countless surgeries and procedures that are also directly related to XLH. This coming Sunday, June 23, is XLH Awareness Day. Those of us with XLH are already “aware” of XLH every day, if not every minute of every day. I’ve considered “coming out” as an XLH-er since most people that I know are not aware that “I have this bone thing.” I usually prefer not to discuss it, though, since it takes a lot of energy to explain it and even more to not react to insensitive comments. People can say the stupidest things and I can only restrain myself so much.

On the other hand, simply raising awareness might help to ensure children are diagnosed early enough to do something about it. If they can get this new drug (Crysvita) early enough in their lives, then maybe they won’t have to deal with all the medical problems that those around my age are having to deal with. That would be a great thing!

It’s nice to think that some day, a future XLH-er won’t have to be faced with the possibility of giving up their tap dancing due to a bad back or feet or legs. (And in the interest of full disclosure, I do not tap dance, ballroom dance or break dance but I have been known to attempt to dance in the privacy of my home while playing loud music.)

Happy XLH Awareness Day!

 

Copyright 2019 S. G. Hunter and Banjogrrldiaries