Medicine, Accommodation, and Rudeness

“October Day”, Jean Charles Cazin, oil on canvas

This is sort of a hodgepodge of medical things that have been bouncing around in my brain, that I wanted to share with you. But it seems connected to me, somehow.

Thought 1: Needing Medication Isn’t A Bad Thing

Not everything, alas, can be fixed by diet, by getting more sleep, or by exercising, or praying more. Sometimes people need actual medical treatment, and that can include medication. This is not a failure, and this doesn’t make you a bad person. I feel like we especially feel like taking medication for a mental health condition is somehow shameful. It is not.

Connected to that is that medications have side effects. A lot of people treat this as a reason to avoid medications at all costs. However, that’s not feasible. At some point in your life, you’re going to need medication, whether it’s Tylenol for your headache or chemo for cancer.

Side effects are to be weighed by the overall good of the medication. For example: Prednisone has a ton of side effects. But it also keeps me alive. So, me staying alive outweighs the fact that it messes with my body’s ability to process glucose, that it causes weight gain, and etc. (However it also keeps my voice in great shape and my joints happy, so I feel like I’m winning here!)

Insulin can also cause side effects but without it, I will be in bad shape.

Everything has potential side effects, from water to the latest wonder drug.

Now sometimes, side effects make it not worth it to continue a medication. For instance, my body cannot tolerate statins, and when I took them, they didn’t impact my cholesterol anyway. So it wasn’t worth me taking the meds and dealing with the side effects for something that wasn’t doing its job!

So if you need medication, that’s OK. Be sure to talk to your doctor about the side effects, if you experience any, and if that makes taking the medicine intolerable.

But to say that medication shouldn’t be taken because it has side effects is…. silly. They’re something to consider obviously. But it’s not a blanket statement you can make.

You have to educate yourself and weigh the pros and cons.

Two: The Question of Accommodation

Recently there’s been a lot of talk about this due to the Fetterman interview (if you’re not familiar with it—Pennsylvania senate candidate John Fetterman (D) had a stroke earlier this year. In an interview with NBC news, he required captioning software so that he could understand the questions the journalist was asking, due to a sensory processing problem due to the stroke.) As such, there’s been a lot of commentary in the social media world about whether or not the reporter would’ve commented on his abilities (or disabilities) if, say, he’d been wearing glasses or been in a wheelchair—or if he was deaf.

Now, I have a little experience in this area. So I have thoughts—obviously.

First off, the only accommodation that most people seem to have no issue with is a person wearing glasses or contacts. It’s so common that everyone just accepts it as a thing and no one says anything. (However, that’s not true when it comes to things like large-print books, menus, signs, etc.)

This isn’t true for anything else. Hearing aids are often rejected because people don’t want to look “old” or like they’re impaired in any way. Only about one-third of people with hearing loss wear hearing aids. Insurance doesn’t cover hearing aids like it covers glasses, soething that I think is ridiculous (and is somewhat ameliorated by the fact that now you can get them over the counter). But hearing loss is also connected to dementia and Parkinson’s disease if it’s not corrected. There are lots of reasons to wear a hearing aid—but a lot of people don’t.

During COVID, a lot of us hearing impaired people were totally lost when communicating, because of masks. I still can’t go to a medical appointment and not wear a mask, which means I am often lost when it comes to what my doctor is saying! But there isn’t any accommodation. This extends to things like movies and TV, where not everything is captioned (or captioned correctly), to getting pushback when I make the argument for microphones and telecoil systems in church because it’s not…aesthetically pleasing.

Many public places aren’t accessible to a wheelchair uses, or someone who is on crutches or uses a walker or canes, because there’s no switch plate on the doors.

Accommodation is limited. How often do you see a braille menu, for example? How many places don’t have a telecoil system to allow hearing aid and cochlear implant users to understand things better?

But when these are asked for, they’re brushed off as “too expensive” or “impractical”.

So, the fact that Fetterman used captions for his interview isn’t really an issue. When I’ve done radio interviews I ask for the questions ahead of time so I can get an idea of what I’ll be asked. Most places will send me a list of questions that will be asked—sometimes more than we actually answer in the interview!

The issue here, in my opinion, is the difference between a physical disability and a cognitive disability. Wearing contacts and a cochlear implant don’t impede my cognitive functioning. My brain is just fine. Surely no one would say that Stephen Hawking was cognitively impaired! But there is a difference, and most people don’t get that (the same as not understanding that there are people in ICUs every day of the year).

The idea that people don’t make assumptions about people with disabilities isn’t true. I’ve had people talk to my parents instead of me when I’m in the room. When I had my new port put in, one of the nurses asked Dad something about me—I was “her” in this discussion—when she could have asked me, and if I didn’t understand her, Dad would’ve told me what she said. People talk around you but not to you. It happens all the time, to just about everyone who has something “wrong” with them that doesn’t involve wearing glasses.

Is Fetterman capable to serve in the Senate? I don’t know. That’s for the voters of Pennsylvania to decide. The answer might be clearer if updated, detailed medical records or statements were released. I do hope, however, that we can have some real conversations about disability, different kinds of disability, and accommodation, because we don’t have them as a society, and we need to.

But we also need to understand, as disabled people, that there are things we can’t do. I, for example, couldn’t do a job that included phone work. I’d be lost! I will never be able to climb Mt. Everest! That’s not “dissing” myself. It’s stating things that are true.

The discussion around disability is complex and fraught, but we need to have it.

Three: RUDENESS!

People, never comment on what someone is eating, OK?

There is a common misconception about diabetics that we can’t ever eat carbohydrates or sugar.

That is totally wrong. We can, nay, we must, at certain points, have carbs! If I didn’t give my body carbohydrates on a daily basis, it would get very angry with me. There are times when I must have them or I will faint, or go into a coma! Or DIE. (NOT KIDDING)

So there are times when we must have carbohydrates, be that juice, or candy, or cake, or pizza.

We can also have them just as a matter of course—we have to dose for it with insulin, like we do everything else. I eat ice cream and cake and cookies. I’m allowed to have them (like everyone else, in moderation!).

Sometimes my body decides we must have sugar right now, and that’s in church. It’s not great, but it happens. It does not break the Eucharistic fast. It isn’t disrespectful to the Lord. I have sugar packets, Skittles, and Sour Patch Kids in my purse for these occasions, as well as hard candies.

So if you see someone that you know is diabetic eating candy, or drinking juice, or having a brownie, don’t assume that she can’t have it, because she can.

Sometimes I have had to ask people to get me juice if I’m having a low and I’m still dropping, because I don’t trust my hands to not spill it. In that case, people get it for me, I drink the juice, and life continues.

But please don’t ask us if “we can have” a cookie or candy. We can. And we might need to have it immediately!

Thus endeth the medical lesson!

Being a "disabled writer"

violets in my yard

The other day on IG I saw someone asking if there were more Catholics who spoke about disability issues or accounts that focused on disability and faith.

Now, this, in and of itself, is not a bad thing but it got me thinking, which got me writing.

I am “disabled”. I put that word in quotes because I don’t really think of myself as disabled apart from my hearing loss. This is something that I’ve noticed, that the range of disability—and who considers themselves disabled—is wide.

And that’s the same as my interests. Like Elizabeth Bennet, “I take pleasure in many things.” I don’t just write about disability and faith, or just disability, or just faith! Taking a quick scan of my blog posts and IG feed, you’ll see babies (ok, lots of babies), knitting, flowers, food, paintings, books, games….all sorts of things. I’m interested in a lot of things, and that’s what I write about. Obviously I am also interested in writing about health because my health is a big part of my life. I do advocate for accommodation. (Here are all my posts with the disability tag)

But I’m never going to start a conversation with “Hi, I’m disabled.” I don’t start by telling people I have CF or I had a transplant or I’m hearing impaired. The latter does tend to come up earlier than usual when I talk to people because, well, it’s sort of urgent if I can’t understand you.

Everyone handles disability or illness in a different way, but don’t expect us to just talk about those things. Some people do—that’s what they feel called to do. But if I just wrote about my disabilities I’d be bored stiff and so would you! I’d run out of things to talk about!

I like to talk about knitting and Maddie and Patty and travel and cooking and TV shows and movies (and speaking of hearing impaired-ness and movies, go CODA!). Don’t just see the disability. See the person behind it.

And also, at the same time, don’t think that we’re exceptionally “brave” or “strong” people because we live with a disability. Seriously. I’m not a saint (ask anyone who knows me, not a saint definitely not). We’re people doing the best we can with the life we have. That’s all.

Oscars 2021: CODA

Of all the best picture nominees, this one I probably the most interesting to me. CODA stands for “Child of Deaf Adults” , and is the story of Ruby Rossi (Emilia Jones), the only hearing person in her family, who has a passion for music. She’s torn between pursuing her love of music or abandoning her parents—her father is a fisherman, and eventually they’re busted by the Coast Guard for not having a hearing deckhand on board. Does Ruby give up her dream of music school to stay and help her family?

(Other reviews in this series: West Side Story, The Power of the Dog, King Richard, Belfast, Dune)

CODA has been nominated for three Oscars: best picture, best performance by an actor in a supporting role, and best adapted screen play (Of the big five oscars, we have three nominations. Not bad!) It’s rated PG-13.

I was really worried about this one—I didn’t think I’d like it. I loved it. It’s so good and deals with so many issues around deafness, but also family!

Ruby’s parents are pretty isolated. At one point, Ruby’s mom, Jackie (Marlee Matlin) talks about how they have their own Deaf community, to which Ruby replies, “Who, your deaf friends? You see them once a month.” And that’s a real issue for her family. Even though her father, Frank (Troy Kotsur) is part of a family that’s been fishing in Gloucester, MA, for generations, he’s not “buddy buddy” with the fisherman. His son, Leo (Daniel Durant), who is also Ruby’s older brother, tries, but it’s hard because there’s no one to interpret for him, and reading lips only gets you so far. (This is illustrated perfectly in a scene where Leo goes to get a beer with the other fishermen, and he just sits at the table, staring at his beer can and missing what is going on around him.) Ruby has to translate everything for her parents—at their doctor appointments, at meetings, even calling her grandmother when her mother doesn’t want to use the video relay because of an interpreter being present.

( I will say, I get that and it’s very weird. It’s like this other person is in on these personal details of your life and you really wish they weren’t.)

(Also: I groan when I hear people say, “I’m deaf (or I have CF, or I have whatever) and I can do ANYthING!” No, you really can’t. You can’t! I can’t! I can’t scuba dive, for example! If you are profoundly deaf you need help interacting with the rest of the world. That’s vitally true, and I’m glad CODA showed it, because it’s too often easy to say “oh, well I don’t need help”. )

The family’s “plan”, if there was one, is for Ruby to continue being the hearing deckhand that the boat needs to operate under Coast Guard guidelines. She’s also their line to the world. But when she joins the school choir and finds out that her music teacher thinks she has a shot at a scholarship to the Berklee College of Music, Ruby frantically tries to divide her time between fishing, school, preparing audition material, and being a normal teenager.

Daniel Durant (Leo), Marlee Matlin (Jackie), and Emilia Jones (Ruby) in CODA.

While Ruby’s family intesenly depends on her—something that her brother tries to get them to do less of, hoping they’ll rely on him (He has lip reading skills, and tries to insinuate himself into the hearing culture around him)—Ruby also expresses her ambivalence about leaving her family when she tells her teacher, “I’ve never done anything without my family.”

The Rossis are a vibrant, extroverted family, which can embarrass Ruby, but as one of her friends says, “You parents still like each other!” They’re close knit and that causes tension but they also really do want what is best for each other—even if that means change.

(There’s a crucifix in their house and Ruby wears a small Miraculous Medal throughout the movie. Loved it. :) )

Also from a music standpoint, it’s also accurate. Auditions tend to run the way they do in the movie and if you walked in without your music, you’d definitely get those looks. And you’d also definitely get those looks if you turned up dressed the way Ruby was dressed! (Also big dog, little dog? YES! cracked me up. But I wanted to scream, Ruby put on your concert dress it is right there!!!!!!!! when they left for the audition!)

If there was justice in the world, this would be the movie that people talked about instead of the inane The Power of the Dog, but, we sadly don’t live in this world. While there’s some crude sexual humor, this is a very warm portrayal of a loving family that has flaws and faults but also great strengths.

Kotsur is nominated for Best Supporting Actor for his portrayal of the Rossi family patriarch, Frank, (He just won the BAFTA for it) and he does a great job creating a believable relationship with his daughter, and the struggle to stay with what’s familiar as opposed to being vulnerable to new people, who may or may not be totally straight with him.

Emilia Jones (Ruby) and Troy Kotsur (Frank)

I found this movie totally delightful, and I highly encourage you to see it.

Accommodations are not a "perk"

An example of a lung function test result graph

As the talk about masking mandates ramps up again, I want to say something to all schools (high school and up)—where students and faculty can get vaccinated.

If you are requiring masks for all students and faculty, then please provide accommodation for students and staff who are hard of hearing/deaf and/or cannot wear masks.

When I was in high school and college, my lung function took a huge hit. As a sophomore in high school, I contracted non-infectious TB, which really destroyed my lung function. In college (also my sophomore year!), I almost died. I spent two weeks in the ICU battling a bug that only one other person in the world had ever had.

For the rest of my college career, I had between 19-25% lung function. In my senior year, I began transplant workup. I was sick.

I also started to lose my hearing my junior and senior years in college.

If I had been forced to wear a mask, I would not have been able to attend school. I’m not kidding. This isn’t a “psychological reaction” to wearing masks. It’s a fact, based on my heart rate, my rate of exertion, and my breathlessness when I wear masks and attempt to do anything now, when I have 54% lung function!

I could not have carried all my books around my high school building, let alone my small college campus. I would have not been able to breathe. I would not have been able to go up the stairs in my dormitory. I would have had to drop out of school, because there’s just no way I would’ve been able to do anything like get to class or understand what the professor was saying. This is not hysteria or hyperbole. By the end of my senior year I couldn’t get up a flight of stairs without being severely out of breath.

My hearing loss was fairly mild in college. In fact I didn’t get my first set of hearing aids until after transplant. But who knows if it would’ve been more of a problem if I couldn’t have see my professors’ lips?

Please. If you are in a position of authority to set mask mandates in a school or business, please provide accommodation for those of us who need it. We aren’t making it up, we’re not trying to be dramatic, we need to be able to breathe and understand what’s happening in class.

Prudence, Acceptable Risk, and Medicine

I’ve been debating this post for awhile, but I think the time has come for me to just write and get on with it. Also, this is gonna be long so settle in.

This is not about the COVID vaccine, really. The COVID vaccine, to me, is just the tip of the iceberg when it comes to the deeper problem, which is that we, as a people, do not know how to make prudent choices, or define acceptable risk for ourselves and our families.

This will be in two parts: This one, and then a piece about the moral/religious side of things.

(Some of these stories y’all have heard before, but they’re illustrative, so they’re coming up again.)

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The first thing we need to talk about is the fact that hospitals are busy every single day of the world.

With COVID, people seemed to be shocked that people were living and dying in hospitals every day. People were in ICUs! (insert running around screaming gif here)

Folks. Yes. People are in ICUs every day. People are in hospitals every day. Hospitals, like all other things, have cycles—there were times when I was on the floor and it was pretty empty, and there were times where almost every single room was full. But yes, there are people in ICUs every day. There are nurses and doctors who work specifically in ICUs. These folks have jobs because ICU specialists are needed on a regular basis. (1)

I understand that many of you do not have the intimacy with hospitals that I have. But a lot of insanity was caused by the breathless reporting about ICU statistics and “people are on ventilators!”

Folks, I was on a ventilator for almost two weeks. Yes. It happens. Some people are one them for a lot longer. But this is not new. This is medicine. This is life. This is—often—death. People die in hospitals every day. In fact, whenever I drive by the former Resort, I think about that, and I pray for the people inside. It’s not just COVID that kills people, although you’d be hard pressed not to think that these days.

(We’ll come back to media coverage in a bit.)

This leads me to my second point, which is that….

Every single medical intervention has risks associated with it.

This includes the Tylenol you take for your headache, the Motrin for your PMS cramps, as well as interventions like being on a ventilator. Every single thing you put in your body can cause an adverse reaction, as anyone who has ever had food poisoning knows.

Life has risks. Driving to work has risks. Getting out of bed is a risk! Taking a shower is a risk! Everyday, we do something that might cause our demise, and most of the time we’re OK with that, because, life. (Drinking too much water has risks!) But when it comes to medicine, all of sudden we lose the sense of acceptable risk.

An example from my life: I lost my hearing because of ototoxic meds (Meds that are toxic to the ear’s hair cells). The choice was, destroy lung infections and stay alive, or not destroy lung infections and hasten death, but then have my hearing be fine. Now, at the time these medicines began to be given to me IV, we didn’t know about the ototoxic nature of them, and now doctors are more sensitive to that. (Yes, once again I pave the way for others!) But all that being said, the choice is—do you want to fight infection, or have great hearing. In my case, it was fight infection—even after my hearing had begun to deteriorate. (2)

Now, the other thing to do, if we know that certain meds or treatments are not good for us (or just cause bad outcomes) is to ask if there’s anything else that can be substituted. I have also done this, because there are some meds that just mess up my body. I have a gimpy right knee now because I walked too far on it when I was on a particular med. So now when I have a sinus infection we use something else, but it has the same risks associated with it, and now I’m just insanely careful when I’m on it (like, I sit on the couch for two weeks careful). But to not treat the sinus infection could—and probably would—lead to lots of other issues down the road, requiring stronger meds, and possible surgeries and hospital stays. no fun thank you.

When the idea of transplant first came up, I was scared at the idea of such a big surgery because I’d never had surgery before. My transplant ended up being my third surgery ever. (3) A lot can go wrong during surgery. I could’ve rejected my lungs immediately. I could’ve died on the table. But at the same time, the only way I was going to survive was to get the surgery (and this was assuming a donor was found).

So, there were risks to transplant, and there were risks to life without it. I made the choice to accept the risks and go forward. Not everyone does that. It’s their choice.

But with transplant comes other risks, mainly the one that I have a compromised immune system and am more susceptible to things (like, um, COVID!). But even within that, we have to look at choices.

Some people post transplant are afraid to open their windows if the grass is being cut. (I’m not kidding) They never go back to work because they’re afraid of infection. Etc. etc. I was never like that, because the point of a transplant is to live your life, while not being stupid (like, tanning—big no no for us, or drinking a lot).

What I’m seeing with the COVID vaccine is people saying, “But there are side effects!”

Yes. There are. They may happen to you. This is the case for everything. single. thing. Read a box of Tylenol some time. Heck, ladies, check a box of tampons—see all the Toxic Shock warnings on them? Yeah. Everything has side effects. Too much sun? You burn. Drink too much? Hangover. Etc. It’s the circle of life. When people just say SIDE EFFECTS! it doesn’t resonate, and it doesn’t come across as a good argument because everything does. (4)

For example: anti-emetics (aka, anti-nausea drugs). One of the most popular anti-nausea drugs is Zofran. Lots of people like it. It’s great. It is not great for me because it makes me throw up; ie, it causes the exact thing it’s supposed to prevent. This also happens with my mom and my sister. So we cannot take zofran.

But that doesn’t mean that I go around saying Zofran is terrible no one should take it there are SIDE EFFECTS!

Zofran is bad for me, but apparently it is great for many other people.

Now, yes, you might get the vaccine, and you might have side effects. It may even be prudent for many people, who are not as an especially high risk of COVID, to delay taking the vaccine. I can see that.

But to say a la Chicken Little that you won’t take it because SIDE EFECTS, and that’s your only argument, is not…a great one. If you say, “I won't take it right now because I might get pregnant and we aren’t sure of the side effects of the medication on pregnancies,” that’s prudent and valid. But if you just say “side effects!!!!!!!!!!!” it doesn’t come across as a reasoned argument.

Sometimes side effects are just going to happen as a part of the acceptance of risk thing. See, losing my hearing. See, chemo side effects. See, “I’m on prednisone for the rest of my life because I need to be and that leads to many things that are not great but I’d rather be alive.” For me, getting the COVID vaccine made sense because if I get COVID, that’s not good at all.

(Now, obviously, sometimes a side effect becomes not a side effect—like thalidomide in pregnancy—and it becomes a “feature not a bug”. That’s completely different than what I’m talking about here. And even that drug has good uses! Just not in pregnant people!)

For you, it might make sense not to get the COVID vaccine, or any other vaccine (like my sister can’t get the regular flu vaccine because she’s allergic to eggs). And that’s fine. But what’s happened is that everything surrounding COVID has become political. So we’re not really working from a clear choice here—we’re working from one that’s clouded by politics and all sorts of other things.

And this is what is lost: the idea that we can make prudent, acceptable risk choices for ourselves without being screamed at or told that we’re being idiots or saying that others are idiots for doing x, y, or z.

I make acceptable risk choices all the time, without even thinking about it, because after 16 years of transplant life, I know. That includes hugging my parents even before I got vaccinated, because hugs are good. (And yes, my parents mostly stayed at home before getting vaccinated—dad works from home). I’ve spent time with my friends in their houses! Because my friends know that if they’re sick, they shouldn’t invite me over, COVID or no COVID!

I have friends that don’t get flu shots. So in the winter, I tell them that if they’re sick, I will not be around them. It’s pretty simple. I don’t yell at them. I just state that if they’re sick, we’re not going to be hanging out. This is a choice they have made, and in turn, it affects a choice that I make. We both do risk assessment for ourselves.

But for some reasons we can’t do that with COVID.

People look at COVID and they see the death tolls and the case numbers every day and they think that it’s the worst thing ever. But there’s no context to this. It’s like if all you did was watch the news, you’d think that we’re all going to be eaten by sharks, or shot up outside the gas station, or kidnapped, or die in a plane crash. This is because the news reports the newsworthy, which is not, you know “1,000,000 in the metro area got home safely from work today!”

(NOTE: this is not to diminish the death toll from COVID. Most definitely not.)

But at the same time, with COVID especially, it’s giving us a twisted picture. We’re seeing “a patient left the hospital after a month today and everyone clapped!” “A person was on a ventilator for two weeks and came off of it and went home!”

This happens every day and it ties back to point one. Yes, it’s a great day to get the ventilator out, trust me. :) It’s a great day to go home after a month long hospitalization, of which I have had a few, because, you want to go home and take a real bath! (And, yes, I was also on the local news after my transplant because I was the first one at my center. You can actually find this on Youtube. No, I will not link to it. :))

But when that stuff is being covered daily, it gives the impression that this is the rarity, and it’s not, if you look at case numbers versus deaths. (Again, see note above.) Most people who get it will go home, or not be hospitalized at all. That doesn’t mean that the losses aren’t sad, because they are. But it does mean that by this sort of coverage, we’re skewing people’s perceptions of real risk. Again, it would be like if the news were doing stories about a person who came home from work safely every night for a week. It would make us think, gee, it must be really dangerous to drive to and from work!

You can only make an acceptable risk evaluation when you have the information in front of you without '“passion or prejudice”, as someone once said in a movie.

And you also have to trust your doctors. This is the final point:

a lot of people do not trust their doctors or the medical establishment.

I, for one, do trust them because my life depends on it. The very few doctors I have had in my life that I did not trust were overruled, thankfully, by doctors I did trust—or I had a come to Jesus meeting with them and said, hey look. (Or I went behind their backs and got information from the Pulmonology department, who is the apex doctor in my situation). I’ve had shitty doctors. My parents can tell you all the stories of the shitty nurses and doctors we’ve encountered.

But my “team”—my transplant pulmonologist, my transplant nurses, and etc.—I trust inherently. I’ve had the same therapist since I was 17—that’s 22 years! With these folks, I can get good information and decide what to do next.

If you do not trust your doctors, then…you’re sort of screwed, honestly. You need to find one you do trust, who also isn’t a charlatan who just tells you whatever you want to hear, because that’s not useful either. (ie, one who says that you can treat T1 diabetes with essential oils—no, you really can’t.)

Without trustworthy people, you can’t make good decisions because you don’t have all the information.

I don’t think that COVID is helping us trust the medical establishment more, as a whole, because we’re getting crazy messaging from the CDC and others in government that seem to contradict themselves many times a day. But at the same time, it’s a little bit like Congressional popularity: most of the time, people have a really low opinion of Congress as a whole, but they love their local guy.

We need to “love” a local doctor. We need to find medical people we trust, and can help us make appropriate decisions for our health and the health of our families. That’s one reason my parents got the COVID vaccine—because of me!

People die every day, COVID or not—and that you should realize that (memento mori, folks!) and use it as a catalyst to live your one life well. You are going to die of something. Let that knowledge encourage you to live well, make good decisions, and be prudent.

Footnotes:

(1) Yes, I’m aware that one of the big things at the beginning of COVID was worries about hospitals being overwhelmed. It was probably prudent to have shut downs in that time period, when we didn't have the information we have now, and when the risk of hospital overwhelm was real—and happening in some places. However, my point here is that there was breathless coverage of the fact that hospitals have full ICUs or have people on ventilators, which happens every single day, everywhere in the world. There was a clear exhibition of the fact that most people do not understand how hospitals actually work, and that people go in and out of them all the time without any fanfare.

(2) This is not a given. Anna Pavlova, the famous ballerina, contracted pneumonia, and was given a choice to have an operation that would remove her ability to dance, or die. She chose death, saying “If I can’t dance, I’d rather be dead.” She died of pleurisy a few days before her fiftieth birthday.

(3) The first one was a combo sinus clean-out and wisdom teeth removal, and the second was to place my port.

(4) Same thing happens when people toss around the words “toxins” or “chemicals” to just refer to every day stuff. There are chemicals in every single thing we eat, drink, inhale, and are. We are made up of chemicals. Same with “toxins”. Water can be toxic if you have too much of it.

Seven Quick Takes--Easter Friday

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HE IS RISEN! Wooooo!

Let’s try to party as much as we can? OK?

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Little bit of business first—Ave Maria Press is shipping books again, and my book is on sale!

The book’s sale price is $9, so grab a couple, stock up! Or buy some other great books—Joyful Momentum , Pray Fully, and Giving Thanks and Letting Go, are other great reads!

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On the blog this week:

Wednesday Notebook #5

Emily Knits a Cardigan!

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Whew, I feel like I have a lot of things to tell you, but I don’t know if I really do! :)

My birthday was last Thursday—Holy Thursday. Obviously we didn’t “go” to Mass. I watched Bishop Barron’s Mass from Santa Barbara—his Masses are captioned, so that’s why I watch those in particular.

There was cake….

There was mucho birthday yarn….

There were other gifts, too, but I didn’t take photos so I’ll have to talk about them next week. :) Maybe I’ll do a whole birthday post so we can have some fun?

-5-

And Easter was weird, too…..I mean, no Mass, for starters. I did watch a Vigil recording at my home parish. BUT—IT IS STILL EASTER. So even though it’s not what we’re used to, the Resurrection still happened. :) We are still Easter people!

-6-

(LONG!)

A couple things that I’ve been thinking about—If we’re all going to be wearing masks for the near future, I, and other hearing impaired folks, are massively screwed, because we read lips. (Well, some of us do!)

Can I just ask—if someone asks you to pull your mask down when you’re talking to them, can you step back and do that? Because otherwise, I really have no idea what you’re saying. In hospital settings my doctors and nurses don’t wear masks, because we end up having a “What did you say?” marathon. It’s just not practical. I’ve seen some pieces that have talked about face time calls or having someone with you to “translate.”

Massive sigh.

Guys. First off, if I had to bring one of my parents to every doctor’s appointment I had, they’d go nuts. And they can’t go to every one. Second, this denies me my agency. I hate to say that because it’s sounds so jargon-ish, but people need to talk to me, not the other people with me. ME. THE PERSON, THE PATIENT.

There are, apparently, masks with clear sections around the lips for lipreading in development. They have to be FDA approved, for starters. And then put into production. And honestly, I don’t think they’re going to be produced for a while yet, because they’re just not a priority.

It is already hard enough for me to get hospitals to email me or talk to people who aren’t me because I can’t use the phone. But if mask wearing becomes super en vogue, a lot of us are really screwed, and I’m going to be either having meltdowns in stores, or I’ll be answering all the wrong questions and looking like an idiot.

I’m trying not to freak out about something that might not happen. But I would ask you all to be aware—if you’re talking to someone and it seems like they’ve really lost the plot, and you’re wearing a mask, chances are they’re hearing impaired.

Oh, and also—and this is just in general—if I ask you to repeat yourself, please do it. Don’t huff about it or be annoyed about it. Just repeat yourself. You don’t need to start with “I said.” And also DO NOT SAY YOU SAID NOTHING. You clearly said something.

-7-

On that note….happy Friday? :) I’ve been watching a lot of the Met Opera live streams. If you’re an opera fan, be sure to check it out. If not, check it out! Tonight is Madama Butterfly, super popular, and a great first opera! Also, this is a gorgeous production.

SQT--A reaaaaaallly interesting week!

Linking up with Kelly!

And it’s gonna be fast quick takes today!

1. OK, so my body does weird things before big events. Jeopardy taping? Pneumonia. I guess for the book release month, my blood sugars will go nuts! But it’s OK, we’ve got them under control now.

2. But to get them under control, Dad and I spent 25 hours at OSU, in the ER/observation, so that was….fun. Best not discussed.

3. So I’m taking two types of insulin right now—a rapid acting one before I eat, and an “intermediate” acting one. These have both made my body much happier! There is sleep! There is energy! My cells rejoice in insulin!

4. But……sigh. OK, doctors’ offices. You must have a system for the hearing impaired to contact you. MyChart doesn’t always work. You must have ways of contact that a patient can do independently! I couldn’t directly contact my doctor’s office last Friday and that led to a really crappy weekend! Today, I can’t select my doctor on MyChart, so I had to contact my FABULOUS transplant coordinator, who will send them numbers that I emailed her! Guys, you can’t think that your lovely “secure system” is going to be the best way for people to get care if they’re hearing impaired! I RAGE ABOUT THIS.

5. STATE OF THE BOOK WICKET is here!

6. Maybe this is the time to show everyone the handy chart about emergency room vs urgent care usage…..

7. OK, that’s it for this week, go read the link at point 5! YAY BOOK! Two weeks to PUB DAY!!!!!!

Seven Quick Takes--The Medical Saga Endeth (we think)

Linking up with Kelly!

-1-

So, here’s a spicy take I wrote this week about Medicare!

-2-

And here’s the follow up:

So, we got the great folks at the CFF involved (they have a team that just looks at insurance stuff). They came to the same conclusion we did: that there really is no plan that covers everything, but that hospitals and doctors and I will make it work. (think Cinderella’s sisters: “I’ll make it fit!”) NCH doesn’t normally have a lot of Medicare people (because, it’s a, um, Children’s hospital), but….”they’ll take it”, says the finance office. (Thank you finance office!)

What I kept hearing from everyone was “well, we haven’t had to deal with this before.” Yes, I am the one that is trail blazing for everyone else. Future generations, YOU ARE WELCOME! I expect copious floral arrangements on my grave and Masses offered after I die. :-p

So, my hospitals are (sort of) covered. My main doctors—as in, the Big Three—are covered. The next issue?

The Prograf (or, THE GRAF).

-3-

The prograf is the med that basically keeps me alive. It keeps my lungs from realizing that they aren’t actually, um, the factory setting. :-D

Now, when I was emailing my nurse about this, she said, “Well, we can always try generic.”

“What do you mean?” quoth I. “Generic doesn’t work for me!”

“Well, the formulation is a lot better now, and the hospital is even considering switching its formulary to the generic,” nurse said.

AH! Well, that would solve problems!

Or….would it????

-4-

So I go to the insurance site. I plug in generic prograf, expecting to see massive cost savings and ease of access!

Hahahaha.

NO.

Generic Prograf is covered—but as a tier 4 med, meaning it’s like, non-preferred, no one wants to use it, and then I see, oh, step therapy may be applied.

Step therapy, for you new people, is when you have to try other drugs first before the company will pay for the med you want.

Yeah, we’re not doing that with the drug that keeps me alive.

So, what we’re going to do is go through prior authoritzation stuff, and we won’t have to pay out the nose, because I qualify for the Medicare Extra Help program (which is a great thing, so kudos there), so we can’t pay more than a certain very low amount.

So.

I have picked a plan. The saga is over. (For this year!)

-5-

In other news, my tree is up, and Susan the Corgi is ready to celebrate….

And I think I’m doing buying gifts. That’s exciting. :)

-6-

I had my first book interview on Wednesday with the delightful Fr. Patrick, O.P. We talked for forty-five minutes about all sorts of good stuff! The interview probably won’t be up until January, but when it is, I’ll let you know! I’ll be posting all media related to the book on the book’s page. . (And pre-order links, to a variety of retaliers, are there are well! Amazon US, Canada, and UK; Barnes and Noble; Indiebound….)

-7-

Just a note about what Kelly wrote about today—how we tell the stories of the disabled.

One of the things I’ve noticed, especially as the practice euthanasia almost on demand rises, is that people don’t really understand life with a disability, or an illness. They think they do. They imagine the horrors of it.

But honestly, that isn’t the way it works.

When I lost my hearing, it was very gradual, over a period of years. It was gradual. Now, if I’d lost it all at once, yes, that would’ve been traumatic, and highly so.

Did I grieve losing my hearing? Um, yes. A lot.

But when it came to CF stuff, it was gradual. I still enjoyed my life, and I do enjoy my life, even with insanely stressful weeks like this week.

Being disabled makes things harder, but it doesn’t make my life worthless or less.

Seven Quick Takes--The First Draft Exists!

Linking up with Kelly!

I.

The FIRST DRAFT EXISTS!

Yay!

When I first got the contract information, the fact that Ave Maria wanted a first draft by June 1 was daunting to some people I talked to. “Can you do it in two months?”

HELL YES I CAN.

via GIPHY

II.

Why was I so confident?

Because I have journalism training. And political training.

And when you have both of those, you learn to write quickly, on ridiculous deadlines.

Deadlines? WHAT DEADLINES.

So, thank you to Professor Kelly Messinger in college for all the Chimes Wednesday nights where we ate Chipotle and wrote into the wee hours! And edited! And wrote! And edited!

III.

Now, that doesn’t mean it’s always easy, because sometimes….

via GIPHY

But then I apply my Maxim: You cannot edit a blank page.

Get anything on the page. Anything. Let it sit there and then come back later and edit it. You never know what can happen.

Chapter 10, for example? WENT OFF THE RAILS. I had no idea where I was going with that one, and we went somewhere I had not anticipated. But there it is!

(It might not stay the way it is. LOL.)

IV.

Speaking of writing—my ebook, Catholic 101, is now $5!

That’s it. Five bucks, y’all.

Go get it!

via GIPHY

V.

I also promise to have the Denver travel posts up next week. This week was just nuts, with getting the first draft done….oh, and getting a new CI processor!!!!!!!

VI.

So, if you want more on the CI, you can visit my series here. Basically I was glad to have hearing, but the processor I had had shortcomings. I couldn’t use the phone.

Now….I might be able to use the phone! I mean, what?!

via GIPHY

I can listen to my voicemails and understand them!

So far, this new processor is a game changer.

VII.

Oh, one more thing about the draft—a question I’ve been getting a lot is, “Well, didn’t you have to write the book before you submitted it?”

Short answer: No. Most places, for non-fiction, want a proposal, with a chapter sample, but not the whole book. I’ll talk more about the parts of the process later (especially in my newsletter!). But, no. I had to write the book to the proposal specs.

Listen Up! (For World Hearing Day)

(c) Wikipedia

World Hearing Day was yesterday, and so I thought I’d put up links to the post I wrote last year, about my CI and how it works and ways people can make hearing better for everyone!

So if you missed them the first time:

Part I: How I lost my hearing

Part II: How the Cochlear Implant Works

Part III: Living with a CI

Part IV: Accommodations, i.e., the post that you should read even if you don’t read any of the others!

I am (hopefully!) getting my CI upgraded in the next few months. The current processor I have has been “obsoleted”, meaning that if it breaks, Cochlear (the company who makes my processor) won’t fix it, they won’t sell any more replacement parts for it, etc. Now, they do this, in part, so that insurance companies will pay for new processors, because if it can’t be fixed anymore, then, yeah. Probably need an upgrade. This one should be better and allow me to hear more, but I have no idea until I get it. :) I do know that it will have bluetooth capability so it can stream my iPhone sound directly into my processor, and this might be a big thing. We’ll see what happens and I’ll let you know!

And thinking about my CI is timely because of a conversation I had in a lung transplant group on facebook. We were talking about the toxicity of a certain class of meds, and that they are crazy hard on the body. Some people were adamant that they would never take a drug in that class.

But here’s the thing—all meds are toxic at some point. They just are. Tylenol is! I knew that the ototoxic drugs were destroying my hearing. But I decided I’d rather be alive, than dead with great hearing. It’s about choices. And sometimes, yes, you just have to cut out a class of drugs. The meds I took over the fall for a sinus infection have pretty much messed up my right knee permanently. I’m not really happy about that. But you know, I like being alive, I like that we managed to stop the infection without it 1) getting into my lungs and 2) requiring the big guns of IV meds and /or hospitalization.

It’s a trade off.

"Even crazy people like to be asked"

Another thing that’s connected to depression is hearing loss.

Yup. Not making that up.

A study by the National Institute on Deafness and Other Communication Disorders (NIDCD) shows that more than 11 percent of those with hearing loss also had depression, as opposed to only 5 percent in the general population. Depression was most prevalent in those between the ages of 18 and 69.

“We found a significant association between hearing impairment and moderate to severe depression," said Dr. Chuan-Ming Li, a researcher at NIDCD and the author of the study. The study does not confirm the nature of the cause-and-effect of the connection.

 And this is very true. If people don’t include you in conversation, if they ignore your needs, then that is very frustrating and adds to depression, because you feel worthless and ignored. It doesn’t matter if people are really ignoring you or not--it’s the perception that’s important here. Depression isn’t logical.

 So if you have friends and family members who are hard or hearing or Deaf, please include them. Please ensure that they get what they need and help them with conversations. We’re not being difficult, really. We just want to know what’s going on! It’s exceedingly frustrating.

Imagine that you’re sitting at a table full of people--friends, family--and everyone is talking and happy around you. Now, imagine that, instead of hearing what they’re saying, you hear Charlie Brown’s teacher’s voice. Or screeching cats. That’s what it’s like. It’s noise.

Now imagine if you ask people what’s being discussed and people ignore your request for information. How would you feel?

You would feel very frustrated and very small. At least that’s how I feel.

Chronic illness, in general, has links to depression.

“Current research suggests that he relationship between depression and other medical illness is bidirectional. Depression increases a person’s risk for developing of number of medical illnesses and also worsens the prognosis of those medical illnesses; medical illnesses put a patient at higher risk of developing depression.” (The Catholic Guide to Depression, page 29)

So, if you have a friend or family member with chronic illnesses and depression, it is really helpful to include them--to be inclusive--but it’s a fine line when it comes to helping.

The person has to be open to wanting help, yours or someone else’s. Check ins, for me, are appreciated--ensuring that I’m taking care of myself as well as I can (getting enough food and sleep), reminding me to clear the decks if at all possible. Listening can be very useful. There really isn’t much that can be said in regards to things family and friends can do, which is frustrating, I know. Essentially, being there, checking in, and ensuring inclusion are always helpful. (For me. That doesn't mean that I won't get irritated--like, what, do they think I'm five and I can't handle things myself? But I know your intentions are good!) There are things people can do--bringing food, or helping with chores. I'm single, which means that it's easy for me to get alone time, but it also means that I am responsible for everything in my house. I don't have a spouse who can help me take care of the day to day things that still happen when you're sick or otherwise out of commission. 

There’s a scene in the movie The Hours which sums up the concept of asking beautifully. Virginia Woolf, having been sent to “the country” for her health (Virginia struggled with many mental illnesses), is sitting with her sister, Vanessa, in the garden of Asham House, Virginia’s home. Vanessa is talking about a party she had, to which Virginia had not been invited, and Virginia has asked why she wasn't invited. 

“Are you not forbidden to come? Do the doctors not forbid it?” Vanessa asks.

Virginia looks at her sister for a moment. “Even crazy people like to be asked.”

Sound and Silence Part IV: Accommodations

Last Saturday was World Hearing Day, so I showed a few shots of my Bionic Ear on instagram. Some people were shocked to see I had one! So I decided it was time to do a little updated series here about why I have one, how I got it, how I like it, and what life is like with one. Here are the previous parts: Part 1, Part 2, Part 3. 

This is the meat and potatoes post. 

First, let's acknowledge that deaf and hard-of-hearing people are often not accommodated. Curb cuts are put in at corners, even when there are no sidewalks. Braille on signs is ubiquitous. (although I know blind people often need things they don't get--like audible crossing alerts!) But captioning has to be fought for. The ADA doesn't require TV stations to caption things unless they get federal funding, for example. 

So the first thing people like me need to do is ASK. And that's hard, I know. But we need to be more comfortable about saying, I'm sorry, I'm hearing impaired. I need accommodation. If we're not asking, we're definitely not going to get! 

With that in mind, knowing what we know now, how can we, as individuals and society, accommodate or adapt what we do for people with hearing loss? 

Here are a few suggestions. Some are for people, some are for institutions. 

1. Be patient. I talked about this in the last installment, but please repeat yourself if you're asked to. Don't get angry. Also, you don't necessarily need to talk louder. Sometimes you need to be clearer. As in, speak slower, enunciate, look at me. Don't hide your mouth! It doesn't necessarily have to be over the top. It might take some adjusting. But please be patient. 

2. Provide alternate means of contact. If you run a church or volunteer organization, for example, don't just provide a phone number. Provide an email address. If you just provide a phone number, I can't contact you, and then I can't help out. Say if texting is acceptable, too! (This last tip is for older people, who might have landlines only. Tell me if it's a cell number. If it is, then I'll try texting.) 

(And a note: I can leave messages on voice mails. That's because I know to leave a message at the beep or when the voice stops. That's different than trying to talk to a person. Does that make sense?) 

3. Provide a chat interface. This is mostly for businesses. If you only provide a phone number, I am screwed. And don't say, "Oh well we have a TTY!" I don't have a TTY.  It's $250-600 for a TTY. Also, TTY use in general is declining as people have email and text. Folks. Come into the 21st century. Provide a chat interface on your website! (It's like how cars had tape players in them well into the early 2000s. Huh? A tape player? What?) Chat interface, the ability to place requests on a website (like AAA!), customer service email, apps....it's a wonderful new world of technology. Use it. Please. Look, if Bobbi Brown Cosmetics, The Disney Store, AAA, and just about every other e-commerce site can provide a chat interface, you can too, government people! 

And do not tell me that it's not secure to do it any way but over the phone! I email my transplant nurses all the time for stuff--we're sending highly "private" health information over email. My bank has chat. I send sensitive financial information over chat! Come on! Don't tell me that the retirement agency or SSDI or whatever can't do the same thing. You can. You're lazy. That's what it comes down to. You. Are. Lazy.  Don't be lazy. 

Let me illustrate what happens when you are lazy, companies and agencies: 

It means that I have to ask my parents to translate the conversation for us. It means that I have to fill out paperwork saying that yes, my parents are decent people and aren't going to lie to you about me. It means that I can't communicate with you on my own. It means that we have to set up times for me and a parent to talk to you, so that we can get something done. This means that my dad has to leave work early, or work from home, or leave for work late, so that he can help me here, or that my mom has to rearrange her day. It is a HUGE inconvenience to everyone. 

If you provide chat interface, then we have none of these problems. It's all easy. And simple. And, dare I say, secure. (My dad is an IT professional. He deals with this stuff all the time. He knows. He can tell you the whole "It's not secure" argument is crap.) 

4. Provide transcripts or closed captioning. If you're doing an online course, please provide captions or a transcript of what you're saying. 

Video is tough. The sound isn't great, a lot of the time. The best way for me to understand someone, in general, is for me to "learn" your voice, and the easiest way to do that is to read captions while you talk. (Obviously, this is not in a real life scenario. :-p In real life, the more I listen to you, the more I learn your voice, your cadences, your vocabulary, and that helps me understand you better.)  But until you get to that point--caption videos, or provide transcripts. 

Also, video companies? Caption ALL THE THINGS. Don't just caption the movie. I like to watch the special features! And it should be illegal to release a video in the U.S. that doesn't have captioning. I mean, come on. TVs do have captioning--most of them. Some older ones don't. But that doesn't mean that they automatically caption videos or TV shows. They do not! 

TV and movie folk: please caption your shows and your channels. Some of you don't. That means I can't watch you. Fix that, please. 

5. Turn the captions on! If you're in charge of a waiting room, please turn the captions on the TV. It is so annoying to hear just mindless sound. Imagine a jackhammer going off around you constantly. That's what it sounds like. Or a baby crying. It's just NOISE. With captions, it's not noise anymore!

In the same vein: 

Movie theaters: Provide captioning devices. Please. I like the movies too! (Marcus Cinemas does, for every movie. It's a godsend. So thankful they're my local chain!) 

Airports: Provide a messaging board at all gates and in the concourses, so people can see updates. Provide a transcript of the safety talk. Really be aware of your hearing-impaired passengers and make sure they get the information they need. Write it down if you have to! It's no good for me to tell you I'm hearing impaired, and then you look at me like I have lobsters crawling out of my ears. 

6. Put in a telecoil system. This is mostly for churches and other gathering places where people are using microphones. Telecoil systems are great! 

Sign indicating my church has a hearing loop installed. This means I can understand the homilies! Yay! 

7. Use microphones There are few things in the world that irritate me more than people who do not use microphones, when a microphone is easily available. Do not do the crappy, "oh, the acoustics are fine." THEY ARE NOT. You are being silly and denying people the ability to hear and understand you. Especially if the place has a telecoil system installed, use the microphones! Otherwise the telecoil system is no good! 

If we're in a place that's echo-y, like a big meeting room or something, and you don't use a microphone, I'm lost. Most people do not know how to project. After a few minutes, I get very irritated and cranky because I have to work so hard to understand you. And if you do this continually I will stop coming to these events, because I will get irritated and angry, and sad, because I cannot hear and understand. And sadly, this seems to happen a lot with church stuff. So....yeah. I might be a leeeeetle annoyed about this. 

Also, face out. Show me your face! If I can see your mouth, that helps. (See the last entry, which talked about lip reading)

If you don't have hearing problems, I want you to imagine being surrounded by a swarm of bees and trying to listen through that. Or being underwater, and trying to hear someone speaking above you. Now imagine that happening for an hour, two hours, three hours....you'll start to get some idea of what it's like to try to hear and understand people in this situation. It's mumblemumblemumblemumble. How long would you want to put up with that? Not long, I'd wager. 

8. In design, think about acoustics. Places where there are metal floors, metal ceilings, metal everything? That's terrible. There is nothing to absorb the sound. It's one big sound magnifier. The ADA requires places to have wheelchair ramps and access*. Do the same thing for the hard of hearing. Think about it. It might not be "trendy", but you'll make me a lot happier. Have some carpet. Have some wood. Have things that absorb sound and don't make it so loud. (in the same vein--braille menus, y'all. Come on. Large print, too!) 

9. Be understanding. It can be hard to have to work at hearing. Because really, it's work. When I've been in a group of people for a long time, I have to work hard to understand people, what's happening around me, etc. So if I say, hey, I gotta go, or I'm going to bed, don't be all "but it's EARLY!" Or whatever. My brain is very, very tired. I probably have a big headache. Just let me go. :) 

10. Inclusion. We talked about this before. But if you're in a group with a hard of hearing person, make sure to include him in the conversation. If I ask you what's being said, please tell me. Don't ignore my request. It makes me angry. I love to talk. If I'm just sitting there, not talking, chances are it's because I have no idea what's happening and no one's cluing me in. This. Is. Sad. Please don't do that. :) That doesn't mean that you have to be all over me every five seconds. But do make an effort to talk to me! Because otherwise, SADNESS!

I think I've covered everything...is there anything else you want to know? Drop it in the combox and I'll answer!

* Doesn't mean they do it well....see my series on the ADA about this. 

Sound and Silence Part III: Living with the CI

Last Saturday was World Hearing Day, so I showed a few shots of my Bionic Ear on instagram. Some people were shocked to see I had one! So I decided it was time to do a little updated series here about why I have one, how I got it, how I like it, and what life is like with one. You can read the other parts here: Part I, Part II. 

So let's talk about my day-to-day CI experience (and a little bit about accommodations, at the end, but we'll talk more about that tomorrow.). 

There are times I don't wear my CI: 

• When I'm sleeping (although I can--it's just not really comfortable. But when I'm in the hospital, I do.) 
• When I'm swimming * 
• When I ride certain rides (roller coasters? It comes off. I really don't want to have to look for it later...) 

There are also times when my head just hurts. Keep in mind--there's a magnet in bone. That's going to hurt sometimes. On those days, I have to take the CI off and I'm deaf for most of the day. It's not fun, but it's not terrible. It's inconvenient. 

I do have to keep the hair there cut short, or the magnet has trouble connecting. I don't shave it, but I do cut it reaaaallly close. 

Currently I'm having issues with the magnet. The outside processor doesn't always like to attach correctly so there are times when it will shift and I'll have to move it in place to get it to work again. That's irritating, but it should stop when I get a new processor. 

That's a fun process, by the way, because insurance companies don't like to pay for new processors. The one I currently have will be declared obsolete next year, and then insurance companies will have to pay for an upgrade, because my current one can't be fixed anymore, and there won't be parts made for it anymore. But until then, they won't. Well, they will. We'll just have to fight them on it. (Here's a trick, guys: Never assume that insurance won't pay for something. Don't just pay the bill. ARGUE WITH THEM!)

Why insurance companies do not pay for hearing aids, or CI upgrades, is beyond my understanding. It's so ridiculous. Hearing is just as important as sight, but hearing gets shafted. (Part IV is going to be all about accommodations. So more on that then!) For example, insurance will pay for an entire evaluation and surgery and a processor for my right ear, but they won't pay for an upgrade for my left ear. Which is cheaper? Which is better for everyone? And which will the insurance company pay for? Yeah. sigh. 

Cochlear implants cost about $5,000. Now, the first one is covered. If you have surgery, then the surgery, the implant, the processor--all that's covered. But upgrades aren't. About every five years or so, you can try and I've had luck with insurance paying then. This year is my five year mark for my current processor. So we will either try this year, to get a new one, or try next year, when it's more likely we won't have to argue as much! 

Think about cell phone or computer updates. Every time there's an upgrade, it's better, right? CIs are the same way. The one I have now is much better than my first one. There are not just cosmetic things (i.e., it's smaller) that are "better", but also in terms of power, of programming, of what it can do. So it's not like upgrading to be "cool". It really is a substantial difference, usually. 

The batteries are around $200-250 each. At some point they stop holding a charge and you have to replace them. I currently have three, but one is cracked so I don't use it on a daily basis. It's an emergency battery. The two I have I rotate, so they'll last longer. 

There are other parts, like microphone covers, and ear hooks, and things like that, that have to be paid for. You get some of these things when you upgrade, or get your processor, but often I have to buy more. 

In general, my CI is great. But like I said in the last installment, I can't use the phone. Everyone sounds like Charlie Brown's teacher. (That goes for people like my parents, too. I should know their voices better than any other--and I do--but I can't call them on the phone. That should tell you how terrible my hearing is on the phone.) 

I do rely on lip reading, a little bit. But not many words are lip-readable. I think around 10% of English words are uniquely identifiable in lip reading. Go talk to yourself in front of the mirror and notice how many words look similar. Really, for me, lip reading helps in context. But on an airplane? Forget it. There's way too much noise for me to understand what the flight attendant is saying, even if she's leaning right over me. I can guess that it's time for beverage orders because she'll  have the little pad out. :) Flying is sort of rough, when you're hearing impaired. **

FaceTime is a godsend. That's really the only way I can use the phone. Do I have a cell phone? Yes. :) But I don't use it as a phone, most often. I FaceTime people, and I text. And I did take ASL in high school, just for fun--God prompting, there....

In restaurants, I want to sit against a wall, or in an area where there won't be sound coming from behind me. I'll generally adjust my CI settings, but I try to make as "optimal" an arrangement as possible for me, to help out. If you're walking on my right side and talking to me, I'm not going to hear you as well as I could. 

The other thing about the CI is that there's a little bit of a lag...a few seconds. So sometimes I'll ask someone to repeat something, and then I'll understand what they said, because my brain has caught up. 

Also, please folks--repeat what you said. Don't say you said "nothing." You clearly said something. Don't huff and puff if I ask you to repeat yourself. If you do that, then guess what? I don't ask you anymore. And then things get worse. And then people say, well, why didn't you ask for the person to repeat it? BECAUSE PEOPLE GET ANGRY. So please, do not roll your eyes or sigh or be like, why aren't you listening. I am. Believe me. 

It is very, very, very irritating to be left out of conversations. A lot of the time, especially in large groups, I don't know what's going on if people don't keep me in the loop. So, please do that. Tell me what we're talking about. Include me. Imagine you're at a table with people and everyone is talking around you. It's not fun. It makes you not want to do things! So please include people. 

My CI is much better than my hearing aids ever were. But there are still things I can't do, and there are still accommodations I need to make. It's not magic. It's awesome, and I'm glad I have it. But it's not perfect. I'm underlining that point so people really understand that. 

*There are things I could do to swim with the CI--there's a waterproof cover, for example. I just don't. But I could get one of those. 

**Flight attendants are just part of it. The safety thing? I can't understand that speech at all. Everything the pilot says? No idea. And we won't even TALK about how airports don't always have message boards, so I can miss important announcements about flight gates being changed, etc. If my friend Mary hadn't been with me for our California adventure, I probably would've missed my flight home, because they changed the gate! It is TERRIBLE. Fortunately airports let you take a "support person" back, so I have people wait with me before I board. I can--and have--flown alone. It's just stressful because I have to be on constant alert for any changes. 

Sound and Silence Part II: The Cochlear Implant

Last Saturday was World Hearing Day, so I showed a few shots of my Bionic Ear on instagram. Some people were shocked to see I had one! So I decided it was time to do a little updated series here about why I have one, how I got it, how I like it, and what life is like with one. Here's part one. 

So, what the heck is a CI, and how does it work?

I'm going to keep this really basic. I'm not an audiologist and I don't play one on TV.  But this handy chart should help. You see the external bit, but yes, there are things in my head other than my brain. There's the magnet, to hold the processor on, and there's the wire that goes into the cochlea. Remember that the reason my hearing sucks is because my hair cells are dead. The hair cells live in the cochlea. So the wire replaces them, in a sense. The wire has an "array"--I think mine has 24--of sound things. I know that's super technical. I forget the real name. But there are24 different entries on that wire that can be individually fine-tuned. (More about that later) So instead of hundreds of hair cells...I have 24 electrode arrays. Now, it's better than nothing! But I note this to illustrate that CIs are not perfect replacements for real hearing. 

I had my surgery in May of 2008. Post transplant I had a lot to deal with--I had a skin graft surgery that November, and then we had to try hearing aids first, and then I had to get myself to agree to having a CI, and so with all that, it was a long-ish process to actually getting one. 

The one great thing is that I was "post-lingual"--meaning, I knew how to talk. (Boy howdy, can I talk.) If you have had severe hearing loss for a long time, or if you're a baby getting one, then there's hearing therapy involved. Even now, there are sounds I hear and it takes  me a minute to figure out what it is. (While writing this, with my CI on, I heard a crazy loud, scary noise. What is that?! It took me a few seconds, but I figured it out--crows.) Everyone knows the person who is hard of hearing who speaks loudly because she can't hear herself. I can hear myself. I'm just loud. (There are times when I can't hear myself as well--when I have the telecoil on, for example, so in church.) 

My ENT is fabulous. I've had him for years--he works a lot with CF folk, and more and more CF folk are having CIs put in. (ENTs also do all our sinus work. We have a lot of sinus work...I am lucky in that area. My sinuses tend to behave.) If you're in the central Ohio area, Dr. Willett, Ohio ENT is my guy and I adore him.  

So the day of surgery was just like any other surgery. Port accessed. Ready to rock and roll. You stay over night, of course, because people are putting things in your head! My audiologist, who is also at Ohio ENT, actually stimulated the CI during surgery to make sure it "worked" and that it had been put in correctly. That's a key part of the process, because I didn't get to attach the processor for a month, due to healing. You don't want to attach the processor and have it not work! 

For 21-30 days, your head heals. I wore my hearing aids, and waited for activation day. This is the day you see when those videos are posted to Facebook or YouTube where a kid or someone hears for the first time. Mine was not that dramatic. But instantly, small sounds came back--the sound of the turn signal, typing, things like that. 

(When your hearing goes, it's usually the upper registers that go first--high notes, high voices, likes kids and women. And fainter sounds, like turn signals, things beeping, etc.) 

My audiologist then programmed the CI. You can have up to four programs. Again, I don't want to get super technical, but I have all four slots on my CI filled with programs. There's a tiny button on the processor that I hit to cycle through them. The first is my "normal" program. That allows sound in from all sides, and is good all-purpose. The second is focused on who is directly in front of me, and cuts out side noise and background noise to an extent. This is good for  noisy places and restaurants. I have another program that focuses this even more. The fourth program is a richer program that's generally for music, but I can use it as an everyday program, too--you get a wider range of sounds and frequencies. 

There is also the telecoil. This cuts out all sound except what you hear through the telecoil system, which lets in whatever's coming in through a microphone.* This is what I use in church, and it's amazing. It's like someone is speaking distinctly and clearly into my ear. You are also, supposedly, able to use this for the phone. That is not my experience. (More on that later.) Of course the issue with the telecoil is that the other person has to have the microphone on, or the system is useless. (It does work for lecterns, too, or stand microphones.) 

Now, I have one implant. I don't have one in my right ear, because I want that 20% of real hearing that I have. When a CI is implanted, it removes any residual hearing you have left. I am truly deaf in my left ear without it. But I don't wear my CI all the time, so I need some residual hearing. This allows me to hear my alarm clock and other loud noises. There are also times when the batteries will inexplicably die. (This happened a lot with my first processor, not so much with my current one.) The 20% also helps out my CI, in a sense. It gives me some sense of directionality--where a sound is coming from, although not a lot. When I'm swimming, I can hear loud things. If I know your voice REALLY well--meaning, you're my parent or my best friend or my sibling--then I can decipher what you're saying, sometimes, with just my right ear. 

I use rechargeable batteries in my CI. I have three of them, and I rotate them. They get put in and can last about 15-24 hours on a full charge. I tend to not put my implant in early in the morning, because I sort of like the silence. But that's changing as I switch my workout routine to being in the morning. I need to hear the video. 

I'm using "hear" here, but what I really mean is "understand". I can hear lots of things. That doesn't mean I understand them, or process them. For example, I heard the crazy bird sounds this morning, but I had no idea what it was. 

Also--and I'll talk about this more in the next piece--but everyone's CI experience is very different. Rush Limbaugh has a CI, and he said he can't learn new music. I can, because, as we saw, I was very musically inclined and my ears had been trained that way. My brain still knows that language, in a sense. I work hard to learn new music. Instrumental music is difficult because it all sounds like noise, at first. But I can learn new songs and new vocal pieces with the CI--I just have to approach it differently. Some people with a CI can use phone adaptation stuff. I can't. I don't know why. But more on that next. 

*The telecoil can be "mixed"--basically, you can determine how much sound you want to get through the telecoil. Mine is 100%, when it's turned on. But you can do 50/50, 75/25, 90/10....whatever. 

Sound and Silence Part I: How I Lost My Hearing

Saturday was World Hearing Day, so I showed a few shots of my Bionic Ear on instagram. Some people were shocked to see I had one! So I decided it was time to do a little updated series here about why I have one, how I got it, how I like it, and what life is like with one. 

I was born with normal hearing. 

Actually, I was born with really great hearing. My mom used to get irritated because I'd hear her whispering things to dad in the next room and yell, hey, I want to hear about that! 

As a singer, and a musician, your hearing is important. Obviously. A lot of my voice lessons involved listening. Intervals, pitch-matching, etc; all of that is a huge part of the musical art. 

In college, people started to notice that I wasn't hearing them when they were talking to me. Now, some of that was just that I tend to get really absorbed in things--a book, something I'm writing. But people would call my name, and I wouldn't answer. 

I went to the audiologist at Nationwide Children's, and I did have some hearing loss. Not a lot, and probably not enough for hearing aids to help. But it was showing up on the hearing tests. OK. I just shrugged and went on with my life. 

In between 2003-2005 (pre-transplant), I was on a lot of drugs. Hard core, IV meds, in order to keep me alive and breathing. Some of these were ototoxic--meaning they killed the hair cells in my ears, the hairs that conduct sound to the cochlea. Without these hair cells, you don't hear. 

(Here's a brief explanation: 

When you are exposed to loud music or noise, it is your hair cells which are damaged. Hearing loss occurs because loud sounds are really just large pressure waves (like when you stand next to a subwoofer and can "feel" the bass). These large pressure waves bend the stereocilia too far, sometimes to the point where they are damaged. This kills the hair cell. Since cochlear hair cells can not grow back, this manifests as a permanent hearing loss.) 

In my case, it wasn't loud noises. It was the medication. Once hair cells are gone, they do not grow back. They are gone forever. 

And the more I used these drugs, the more hair cells died, in both ears. 

By the time of my transplant, my hearing had gotten worse, and we were starting to think about hearing aids. I was fitted with my first pair soon after transplant. Hearing aids are not covered by insurance. I needed the most powerful kind, the behind-the-ear hearing aids, and they were fit to my ear shape. 

They were also a pain in the butt. 

Hearing aids just magnify sound. It's like turning up the volume on everything. But it's everything. It's not discriminate. Things like pages turning were incredibly loud. In a crowded room, I couldn't focus on one sound. Everything came in, all the time. 

The other problem is that hearing aids break. The outer ear part would separate from the part that went in my ear. I was constantly trying to put them back together with tape! 

In 2007-2008, I got sick again--and more ototoxic meds. Now the hearing aids weren't really helping at all. It was time to think about cochlear implants. 

I didn't like this idea. One, I didn't like the idea of a magnet in my head. I didn't like that it would take any residual hearing away from the ear that had the CI. I didn't like the idea of surgery and weirdness. 

But eventually it got to the point where it hurt to hear. The organ at church was painful. Listening to people was awful. I didn't like to go to crowded places. I couldn't go to the movies, and I love the movies. 

That's when we decided it was time for a CI. 

A cochlear implant is vastly different than a hearing aid. A hearing aid, as I said above, just amplifies sound. A CI helps my brain decipher and understand the sound. It directly stimulates the auditory nerve, so they bypass all my damaged equipment and go right to the source. 

I had to have some tests done: you can't have a CI unless you have a certain amount of hearing loss. You need to have moderate to profound loss to qualify for it. Insurance does pay for a CI and the surgery.* I had a CT scan and MRI** on my head, to make sure they could implant the magnet, as well as  more hearing tests, to determine the extent of my hearing loss, and also, which ear would receive the implant (I didn't get bilateral CIs. More on that next.). My right ear has slightly more hearing than the left, so the left ear was the "winner", and has the CI. 

Surgery was scheduled for May of 2008. 

In the next installment, I'll talk about surgery, recovery, and how the CI works. 

* More about insurance coverage in the upcoming installments. 

**Last MRI ever, because, with a magnet in my head, they're contraindicated from here on out. Yay! 

Invisible Disabilities and the Workforce

Fun medical equipment from the 1980s....

Take a look at the picture of me on the sidebar. (If you're reading this in email, click through.) 

What do you see?

I'm not asking for an assessment of my physical attractiveness, or lack thereof. But if you just looked at that picture,  you would think, yes. She looks like a pretty typical 30ish woman.

This is what you'd be missing: 

*You can't see my cochlear implant, tucked behind my left ear. I don't wear any hearing devices in my right ear, and there's only about 20% natural hearing left there. 

*The scar on my forehead? You can see that, but you probably don't know it's from a skin cancer removal. You also can't see the bald patch on the back of my head, from another one. Skin cancer is 10x more common in post-transplant people, because of our immunosuppression. It's not because I'm fair. (And I'm religious about sun protection, anyway). 

*You can't see that I've got about 52% lung function--which for me is good. That's great! But for normal people, if it's lower than 70%, there's probably an issue. For me, 70% is a dream I will never see again, after hitting it in 1997. So imagine working without one lung. That's me all the time--and that's GREAT. I LOVE IT! 

*You can't see the burn on my right arm, which is left over from transplant surgery. Third degree burn. Skin graft. It's rendered my right arm usable--thank God I still have it!--but it doesn't have complete function like it used to. (Knitting probably helps, though, in making it stronger.) The skin is very, very delicate. It tears easily. So I can't do a lot of manual labor with this arm--and this is my dominant arm. If you were looking at me, you'd notice, but you wouldn't have all that information. 

*Oh, and I'm anemic. I always have been. Part of the paleness. :) But that affects my stamina, too. I'm used to it, now, but there are times when I need red meat and sleep--Moreso than the average bear.

I'm telling you all this because invisible disabilities have been in the news lately, as a part of the new Medicaid standards the administration is considering. I look pretty "able bodied", but I'm not--as any physical exam would show. I can't use a telephone--I use FaceTime, but not a real phone. If you call me, I can't understand you. You will sound like Charlie Brown's teacher. Being immunocompromised means if I get sick, there could be a hospital stay in my future. You get the flu, you stay home. I get the flu, I can end up in the hospital. I need to be more circumspect about where I go, especially during flu season. And honestly, I need to take care of my body. That means giving it enough sleep, among other things.  

So, looking at me, you can't see these issues. But they're there. And when you compare me to an average 35 year old woman, it becomes apparent. Invisible disabilities are real. Ask anyone who has arthritis, for example. Or diabetes. Or epilepsy (which I had as a kid). They're not to be taken lightly. Just because someone looks able-bodied, doesn't mean she is able-bodied. 

As a society, we need to be cognizant of that. I'm not making policy suggestions, here, but we need to be aware that there are serious disabilities that people cannot see, and that can impact ability to work. For example, I look fine. But you don't want me to be your receptionist, or ask me to carry heavy things or fix machinery on a regular (or even semi-regular) basis. And of course, I see many more doctors than average people. I see my transplant doctor every four months--I see my ENT every four months. I see my dermatologist very frequently, and I have days where I'm out having Mohs surgery, or having things removed--that takes time. I can have surgeries scheduled at the drop of a hat. Any employers who hires me needs to be aware of those things, and needs to be flexible about them. If they're not, then I'm in trouble. And my employer won't be happy, no matter how great my work is, or how intelligent I am. Without that understanding and flexibility, a job will be hard for both of us. 

I want to provide this as food for thought, when you read about invisible disabilities, or work requirements. It's not wanting to work--it's things that make working difficult, for both employer and employee. 

*

Having said that, though, I don't think a person with a disability or a chronic illness should automatically go the SSDI/Medicaid route. Here's why. 

I think that being "normal", as much as you can, is good for self-image, self-esteem, and general mental health. I know that one of my biggest drivers growing up was that I was not going to be babied. I was going to be normal. That meant, doing my homework. Going to school. Taking exams. Etc. If I needed accommodation, I asked for it, but it was low-key. I finished high school. I went to college. And after college, I got a job. 

I knew that I would need a job with good insurance. So yes, if you have medical issues, that means you have to consider jobs with good benefits. It doesn't mean you can go off and join a non-profit that doesn't provide good medical coverage, OK? You have to be reasonable and logical. I wrote more about this here. 

I do not think it is a good idea for people with CF to sit around at home and bewail their state. First off, that would have driven me insane. Really. When I had to be home for four months post-transplant, after about month three, I was going stir-crazy. I have to have things to do. 

But--there comes a time, when yes, you can't work anymore. This happened with my friend Sage. When she was listed for transplant, she had to leave her job and apply for SSDI. That does happen. It's part of life. But I don't think--and we talked about this often, so I know we agreed here--that she wouldn't wanted to sit at home, either. 

Maybe you do. OK. But my feeling is, if you can contribute, contribute. BUT that requires having an employer that is flexible and that is willing to work with you. And I had that--until I didn't. Once that goes away, then life can get very difficult, and then it might be time for SSDI/Medicaid/whatever. If that time comes, then go for it. That's when people on the government side need to realize that we might look pretty able-bodied. But we're not. 

And also, when it comes to the Medicaid/SSDI system, a lot of the time, they're not talking disability like I have a disability. They're talking about worker's comp sort of stuff. Like, back problems. Problems with limbs, or standing for eight hours, and movement. The system isn't really designed for people who have chronic issues that aren't movement/skeletally based.  That is frustrating, because what I have is what I have. I'm never going to get my hearing back. My lung function may go a little higher, but this is pretty much as good as it gets. I'm never going to get better skin on my skin graft. So the government side of this needs to realize that some disabilities don't get better. They might stay stable--or they might radically get worse--but "better" is not going to happen.  

I know that before I had to deal with all this, I had no idea that any of this was true. So I think it's worth it to share these thoughts with people, so you can realize that when government talks about "disability", there are levels, and there are degrees. 

Seven Quick Takes No. 127

I.

In case you missed it: Thirty Days of Beauty continued this week. It was really all I wrote this week, since I was in Houston visiting my sister, and didn't bring the laptop with me. So go enjoy those posts. :) 

I will be updating my Houston Postcard next week with the places I did this trip, so it will be more Comprehensive for all you Houston-bound people!

II.

When I was in Houston I did a lot of sketching, including making a point of taking my supplies to the beach at Galveston. I knew that the paint would dry faster in the heat, but I wasn't prepared for how much faster. Still, I'm pretty happy with what I managed to get. 

III. 

If you follow me on Instagram, you are aware that my sister has a cat. Bella is a pretty sweet kitty, who flicks her tail whenever you say her name, and likes to try to get extra kibble out of the automatic feeder. (My sister is a nurse who works night shift, so automatic feeding for Bella is a good thing!) She discovered that by moving her paw under the slot, she could get extra kibble to drop down. Sometimes. Never having lived with a cat, I was hugely amused by her behavior. 

IV. 

There were FOUR bookstores visited on this trip, guys. FOUR. One of them, yes, was a Barnes and Noble, and I wasn't there for very long, but still. FOUR! 

Brazos, of course. I introduced Melanie to its beautiful-ness. Small but mighty. 

We checked out Galveston Bookshop--didn't buy anything, though. It looked like it might be a decent place to prowl around and look for books. It's mostly used books, with some new, and they have an excellent collection of books about Galveston and Texas, if that's your thing. They also have a shop cat!

The last shop we visited was Murder By the Book, which was excellent. It's a lot more than mystery novels (at first I was like, mystery novels are not my thing), but I had a lot of fun here. More about this guy later. 

V. 

This chocolate cake, people. THIS CHOCOLATE CAKE: 

Does it remind you of this scene in Matilda, or what?!

It reminded me of that. :) And Mel and I love Matilda. So extra bonus points. 

And no. I did not eat that entire piece. Do I look crazy? But it was magically delicious. 

VI.

One of the things that I'm terrible at vis-a-vis traveling is unpacking. My suitcase sits in the main room and is gradually unpacked over a series of days. The longer the trip, the longer it takes to sort everything out! 

VII. 

And finally....

 I wrote a piece for the Cochlear Website about my Jeopardy! experience. You can read it here. 

It went up on Tuesday when I was in Texas so I didn't have time to write about it. :) But here you go! 

Government Incompetence

(I know, it's Monday, and that means Catholic 101. But y'all are going to get that tomorrow, because I'm using this space to vent a bit. Sorry.)

As we know, I have a cochlear implant. As you may or may not know, everyone who has one has varying degrees of success with it. Some of it is how hard you work at it (like I do with music). Some of it is just....well....blah. 

Like the phone. The phone is hard. If I need to make phone calls, I usually need someone like my parents to relay information to me, so I can answer and understand what the person on the other end wants. 

Some places have excellent chat capabilities, and I don't have to do this. My bank, for example (Telhio Credit Union, giving you a shout-out here!). I can do things without other people helping me, or having to drive to a bank branch to deal with things that other people could do over the phone. Even things like roadside assistance are being done via apps, so you don't have to call. You can just hit buttons and voila! Your flat tire gets changed! 

But then there are places that are ridiculous. One of them is in the realm of state government (which, as longtime readers know, used to be my place of employment). 

The state says it wants to keep its employees information secure. That's a nice thing, right? We want our information to be secure in this age of scams and identity theft. 

But the problem is, if you're deaf, you're screwed. If you have a hearing impairment, you're screwed. Why? Because the State of Ohio doesn't offer a chat window on their DAS or Public Employee Retirement System site. You have to call. 

If you can't make a phone call, you have to physically drive down to the building to reset the password. Let me tell you how ridiculous this is: If you live in, say, Cleveland, which is three hours from Columbus, you have to drive to Columbus to reset your password for the website access, if you can't use the phone. No, I'm not kidding. I cannot have someone else relay the questions to me, and I answer. That's not "secure" enough. Nope, you have to do it in person. 

I'm in my thirties. It's a fifteen minute drive for me to the retirement system headquarters. But what if I was, say, seventy? Or older? 

And in case you're saying, well just remember you password, Emily, the site is stupid. If you try to reset it over email, they will send you a temporary password--which will not work. I just did this. I know. They send you a password that doesn't work? What is that about? Fortunately, my dad, when he called the system, got a nice person who told him the "real" password reset password (real meaning the one that works) and I was able to reset my password without any problem. 

But see, Dad had to call. Someone else had to do it. And some people are not nice, like this person was. 

I wrote awhile back about the Americans with Disabilities Act and how it doesn't really help hard of hearing/Deaf people.  This is just another example of things that people don't think about. In the name of "security," they make life much harder than it has to be for those of us who can't use the phone.