Wednesday, July 14, 2021

deaf superpower: Missing Out

The other side of being hyper-observant is missing out. I know that *something* is going on, but unless I get the scoop, I miss out on the details.

This is an odd take, but I stand by it: I missed a lot as a kid (still do as an adult), and a lot of it was worth missing.

Whispers? Rumors? Gossip? Missed most of that shit. 

I was never in the know, never up to speed on the lingo, trend, story, whatever was traveling along hushed whispers and mumbled stories at the lunch table. And I was better for it. 

Ignorance was bliss. I didn’t know if someone was laughing at me or the dork next to me. Thank God. We were all dorks, anyway.

I didn’t have access to the *DRAMAAAA* and therefore didn’t get drowned in the drama. My childhood was fairly drama-free.


Even as a teenager, the edge was shaved off by my lack of access to the underground of shenanigans. My parents, undoubtedly, did not mind.


A few years ago my high school graduating class celebrated our 20 year anniversary. I couldn't make the reunion, but enjoyed seeing the current and "throwback" pictures that everyone posted in our Facebook group. 


But it was kinda hard to look at sometimes. So many pictures were of parties and gatherings that I most definitely was *not* invited to. I saw groups of folks that were friends, hanging out at someone's house. But I wasn't there. 


Some were from my senior year when I was indeed, not there. (I had moved with my family- but then I came back to graduate- it was weird but it worked.) But many were from the years that I was most certainly around.


I'll be honest, I felt sad about this, like, why wasn't I invited?! But I think part of the answer is that I wasn't clued in. I didn't connect to the undercurrent of whatever was happening, so I missed the organic process of knowing where the hang out was. 


Also I was a churchy girl, so they probably assumed I wasn't interested. At the time, this was mostly true. It was a good thing I didn't go to those parties. I would've hated every minute and been super awkward about it.


I went through my wild stage in seminary, which was a much better age and group to be wild with. (Seriously, the BEST parties.)


Here's the thing, I didn't know I missed the parties until about 20 years later. I would have been devastated at the time to know how much I was missing out. 


What a delightful gift, to only learn I was left out when I am emotionally capable of processing the fact. The parties I was not invited to were hosted by people I wasn't that close to, it was not any real betrayal or conspiracy. 


All I really missed out on was the drama.


Why didn't I even know about the parties? Parties are whispered about. For me: whispers are indiscernible, even with hearing aids. 


If you have ever whispered anything to me in my entire life and I “understood," I was absolutely faking it. I didn’t hear and have learned not to care. Most whispers are not that important.


Quick tutorial on etiquette for deaf and hard-of-hearing folks. If we missed it and say “what?” and you say “nevermind,” or “it wasn’t that important,” we immediately hate dislike you. It’s so dismissive. 


By saying "nevermind" you’re deciding whether we are worthy to have access to what you said. Even if it IS stupid, you said it, so we deserve to decide for ourselves how dumb it is. 


If you continually whisper and mumble important things, we stop hanging out with you. It’s just way too much work. I thought about making this paragraph less bitchy but decided against it.


You know what else I missed out on? 


Most of the dialogue in movies and TV shows. Without captioning, it's truly a guess at 75% of what people are saying. I am *not* your go-to for pop-culture trivia. 


My lack of access to closed captioning meant that misogyny and racism in television and movies was muted. Not a miss. 


SO many sexualized jokes and innuendos that I missed not only because of my naivety, but because I literally didn’t hear it. 


Same with racist comments or homophobic comments, I missed so much of that. I’m not saying I missed racism, homophobia, and sexism altogether, I’m just saying I didn’t get as much as my hearing friends.


I missed some good stuff, I’m sure, but so much of the noise out there is pure noise, and I’m OK with missing a mountain of it. 


Here's a good story of missing out: my great-grandfather, August, grew up in Berlin, Germany and had a sledding accident when he was a child. He broke his leg so severely that he was bed-ridden for months. During that time he read books to keep himself occupied. 


August became a journalist. His broken leg healed slowly, it was a good inch or two shorter than the other. This mild handicap disqualified him from serving in either world war. His journalism career, however, allowed him to get out of Germany (although he did get stuck in Amsterdam under Nazi rule), and eventually to the US with a job at a newspaper. 


I say those were good misses. All because of a short leg.


Growing up, I also spent lots of time reading. My cleverness with words and editing is probably at least partly a result of my deafness. If I wasn’t deaf, would I want to spend hours in silence with a book that was my easiest access to stories? Not sure, but it makes me wonder.


Sometimes missing out on stuff is a good thing. I'm grateful for my deaf superpower of missing out. I don't catch all the drama. I don't shoulder all the needless worrying of details that don't really concern me.


I'm also used to not getting the whole story. FOMO does not have a hold on me because I've been MO all my life. No fear of it here. That's freedom for me.


Did you miss anything that may have contributed to who you are today? It’s fun to wonder. 

Tuesday, July 13, 2021

deaf superpower: Observant as hell

When I call out, name, and highlight the superpowers that come from my disabilities, misfortunes, and otherwise; I am NOT saying that these are born out of a purpose. 

I am not saying that God (universe, whatever) gave me a jacked up spine, mental illness, deafness, and a uterus SO THAT I would have these superpowers. I do not think that I am deaf because God needed me to learn a lesson, or to teach a lesson to one of you.

I haven’t solved the theological conundrum of why shit happens yet. 


Here’s where I am at the moment: being human comes with pain and suffering, joy and love, and a crap ton of imperfections. 


The only sure reason I know that I am deaf is because my parents both have a recessive gene for nerve deafness and I had a 1 in 4 chance of having the recessive gene from both sides come to full expression. (Yay punnet square!) 


Cause and effect: I won the deaf lottery.


You may believe your imperfections were given to you as a purpose. That's OK! Whatever belief helps you fully embrace and love yourself is the one that helps. Just don’t get hung up on it. 


We do not need to understand the theology behind our imperfections to come to terms with them and glean our superpowers.  


Now let's move to superpowers.


I am deaf (lower case because I don’t know sign and didn’t grow up in the deaf culture).


I was talking to my child the other day without my hearing aids in and he said: "Wow! You sound really different!!” 


I sound deaf. Because I am. 


For so long I’ve tried to be normal, blend in, present myself as a hearing person (with lots and lots of help). But now I’m realizing that my deaf voice- THAT is my voice. 


As I embrace my deaf identity, I can finally recognize my deaf superpowers.


One of my deaf superpowers is: I am observant as hell. 


Deaf people lean on their visual observation to fill in the missing auditory gaps. We read lips, body language, eyebrows, and I swear there’s a sixth sense for some of us. We need all the help we can get, so we become experts at reading our visual (and vibe?) clues. 


Here’s a fun trick I have: I can often tell what accent a speaker has in a muted video. It's automatic, I'm not *trying* to figure it out. I just watch the video on mute, and the voice that plays in my head has an accent. Voila!


My observation superpower makes me pretty amazing at a lot of things. Sometimes I might know what you're feeling before you do. Our bodies often speak before our brains compute.


My older sister is a therapist, and she is also deaf (she won the deaf lottery too). She is realizing the superpower that her hearing loss has been in her career as a therapist. 


Can you imagine having a therapist who can see through your bullshit within seconds? Scary, but helpful! 


It takes years of training and practice to get to the top of your game in reading body language, but as a deaf therapist, she has been amazing at that since the beginning. She has a *lifetime* of hyper-observation practice to glean from. Add a master’s degree and over a decade of experience, and she is one bad ass therapist. 


She gave a talk at a recent online gathering of therapists, encouraging them to find their own superpowers:

I have a superpower. I am ninja quick with microexpressions. It’s how I’ve survived my entire life... My attunement and ability to move in quickly - I contribute that to being hearing impaired... I hear with my eyes.  

-Kelly Bourque, LMFT, owner of Red Therapy group

See what I’m saying? Superpower. 


I was a hospice chaplain for a handful of years and always worried that my patients would be telling me some deep dark death-bed secret and I’d miss it. Whispers, mutters and mumbles are impossible for me to hear and discern. 


The reality is that most people who are in their last moments do not talk. They look. My observation powers and sixth sense means I often had a feel for what they were looking at. 


One patient had nothing but fear in her eyes. In our previous visits, she told me stories of her life. In her eyes this time: was her dead abusive husband waiting for her on the other side?


Aw hell no. 


I don’t claim to know exactly what happens when we die, but I could say with absolute certainty in her ear as she struggled to release this life for the unknown: 


“You are safe, you are loved, it’s OK to go.” 


Mean-ass husbands are not going to touch you.


She died peacefully that night.


I won't take the credit for her peaceful passing, but my soul tells me I helped by telling her what she needed to hear to let go. 


My intuition is highly developed. I trust my gut as an integral part of my observation tool box.


SUPERPOWER: Observant as hell.


Do you have something “wrong” with you? What’s your superpower hidden underneath? The way you've coped, that's likely made you a master at something. 


Example: Folks who are dyslexic, they are solving complex puzzles EVERY time they read. EVERY time. That's impressive. It's also exhausting. Think about your superpower, and think about the energy you spend doing it. 


It's impressive, but you might need to rest. 


I am hyper-observant, as a skill, but also as a necessity. Large gatherings friggin exhaust me. This is why I nap and take baths. I will not apologize. I just gave a handful of folks my FULL attention for two hours. Nighty-night. (I'll write more about resting later.)


I'm going to keep listing more of my superpowers in the coming blogs. 


I hope you'll start to accept the "imperfect" parts of yourself and discover your superpowers.

Monday, July 12, 2021

Intro: Dafka-energy (exploring my superpowers)

The idea for this blog (and the next few) came to me while I was reading in my bath tub (inspiration portal). 

I was reading “We Should All be Millionaires” by Rachel Rodgers. The section that lit my brain was on the history of women and our lack of access to wealth building opportunities.

It occurred to me that not only are women quite impressive for the success garnered from a limited amount of time (and resources), but *I* am impressive because I am deaf and people with disabilities are also on the list of historically blocked opportunities. 

This epiphany moved me.

I am inspired and determined to be successful. Simply for the sake of having achieved it. 

Quick story: my grandfather's cousin returned to Berlin after WW2. Friends asked why she, a Jewish woman who had lost so much during the Holocaust, had chosen to live in Germany, the author of her misfortunes. 

She said “Dafka!” 

This is a Hebrew term I will loosely translate (her intention) to mean: “Because, fuck them!”

My current energy has a little dafka to it.

I should not succeed. There is plenty about me that says the opposite (and why I have a chance), but as a stereotype, or a statistic, I’m low on the “best chance to succeed” list. 

That makes me ANGRY. 

I am going to use this anger to transcend and transform: dafka. 

There is ABSOLUTELY NO LOGICAL reason why I shouldn't be successful. It’s my uterus and failed nervous system that our inherited systems point to as a sure-fire predictor for mediocrity. 

My "statistical" chances of success are not based on my abilities, but on the failure of the system around me. Our culture, education, and infrastructure are not equipped and cultivated to create successful deaf women. 

Don't I know it.

Folks like me with their own adjectives that don't get full cultivated support of the system, they have to figure out a path to success outside mainstream. 

This makes us badasses. We don't realize it.

History tells us that women (especially women with a disability AND mental illness AND children) should not succeed, CANNOT succeed, and better find herself a good husband. 

At the very least, we should be shocked and amazed when it happens. Newsworthy! Who takes care of the kids?!

I am a deaf millennial descendent of German Jews and mid-west farmers with mental illness and a uterus? And I have two kids? 

Damn, not a good formula.

Well, DAFKA.

I got myself a good husband, and I am on my way to be HIS SUGAR MAMA. Thankyouverymuch.

Imma show this world what I can do. On MY terms, MY rules, MY body, MY super skills, MY compassion, MY generosity, MY empathy, MY love of beauty and FREEDOM. 

MY whole self is fully and completely qualified to build success. 

I am human just like everyone else. I’m also not a millionaire (yet). But I will be. 

Because, dafka.

In the next few blogs I’m going to unpack some superpowers that my disabilities and bad statistical odds have given me.  (I hope you see yours.)

Why tell this story? Because I want to. The bath tub told me to. I also want to shift the mainstream. I want people like me to see themselves as whole, with no caveats. I want to generate space where we have no reason to feel inferior or odd. 

Can you see yourself as a person with superpowers?

I'm going to prove to you that our humanity is not a liability, it’s our superpower. 

Then we can go be our full selves, unrestricted. Successfully.

Get dafka with me.

Thursday, July 1, 2021

How to not be an Asshole to your kids

If you're an asshole, they'll be assholes. 

So I came up with this list of how not to be an asshole to your kid. 

Partly to remind myself, partly to feel good about my parenting, and partly to be helpful. You can decide the percentages.

Chores!

1) Be honest.  

Chores suck, don't expect them to love them. You don't, why would they? Commiserate with them and then share the load. 

2) Delegate. 

DO give them chores for the love of God. They will be assholes if they don't learn the essentials of how to be a human and take care of shit and be in community.   

But scale it down from Cinderella to... I don't have a fictional character to point to- but the one Disney should use to show a normal person helping out.

          3) Communicate. 

If your kid is overwhelmed, listen to them and work with them on how to make it manageable. Don't be all overwhelmed yourself and expect them to just handle it like you're (not) handling it. Delegate, communicate, and treat your whole house like a group of humans who are all capable but not servants. Mmkay? Remember - you also have to not be a servant. 

There's actually a lot here in the chores section that I could talk about- but imma move on.

Electronics!

1) Be realistic.

It is actually annoying to work on something for 55 minutes and be two minutes away from the "save and quit" and someone is screaming at you. 

Why are video games made like this? To piss us all off. 

But it's not your fault (unless you design video games- and then I ASK YOU WHY). It's also not your kid's fault. Give like five minute warnings? I don't know. Figure it out. 

Even if you think video games are weird and lame and your parents didn't let you play except for Dr. Mario and Tetris and Super Mario Brothers on your gameboy (just an example)- have some grace and come up with a system that doesn't involve screaming. You know how they say "just a sec!" You do it too. So... work it out. 

This is my least helpful section- I know.

2) Give yourself a break.

Obviously the time of quarantine was a time to throw all the rules out the window as far as screen time. 

If it wasn't for you: dear God honey- go watch ALL of the Lord of the Rings movies (extended version), and the Hobbit movies, and then also the Harry Potter movies. You earned that screen time.

For the rest of us: it's maybe still OK to have less rules. My family watches SO many movies together. Is it lazy? Maybe. Is it fun? Yes. Are the children and adults happy? We are. So I'm not going to be an asshole to myself OR my kids if we want to watch a movie. Call it theatre if you need to feel better about it. 

My main point: the screen time you're stressing about is probably not as bad as you think. 

Emotions!

1) Allow space for it. 

Just because it makes you uncomfortable, doesn't mean they're bad. It's OK if it makes you feel uncomfortable, but don't throw that on your kid. Go be uncomfy in the bath, or outside, something. 

Emotions are part of the essence of being human, so if you try to lock that shit down, you're locking your human down. Don't do that. 

Kid is freaking out over losing their ice sword in the video game? Absolutely that is the lamest thing- BUT- if they can't figure out how to be sad/mad/frustrated and then move on from the ice pick loss- then you got problems in your future. 

2) Don't judge. 

Don't judge the emotion or the reason, just give space for the kid to process the important thing in their life- even if it's not your important thing. 

My sisters are therapists and said that emotions have like a 90 second cycle. If you accept the emotions and don't try to make it something else, they resolve like an ocean wave. Or maybe they don't. But have you ever tried to manipulate an ocean wave? Just ride it and hug and breathe. 

If your kid learns to have emotions without locking it down or escalating it - then their emotions will function the way they are supposed to: as a temporary and therapeutic response to the situation at hand. They might not do "emotion right" all the time, that's OK- that's literally what childhood is about- learning. They learn through experience, not micromanagement. 

Help your kid not be a zombie robot or hot mess. If you are a zombie robot or hot mess, try being less of an asshole to yourself. It takes time and practice. You can start at 40, and it'll take time. But there's hope! 

If you let kids feel free to process a hard thing emotionally now - they won't have to do all the hard work like you're having to at 40. How nice is that?! Stop the cycle and don't be an asshole.

Body!

1) STOP TALKING MEAN

To yourself. Yup. I know you don't say nasty things to your kids. If you do- stop that rightthisminute. You might be doing it not on purpose, like: "Ooh, I wouldn't eat that, you've put on some weight! You cute chunk!" Doooonnnn'ttt saaaayyyyy thhhaaaaat. 

If your kid grows up hearing you say "I'm fat, I hate my thighs, My face is weird, I can't take good pictures" they are going to absolutely believe all of that and more about themselves. 

Why? Because you look perfect to them until you tell them you aren't. Once they realize that their own beautiful parents are ugly, they will automatically assume they are. That's all super bullshit. 

Don't be an asshole to yourself, and you will automatically not be an asshole to your kid. 

Take pictures. When you look dumb in a picture- laugh- because you are a fucking human and no one is paying you to take a picture in the moonlight. 

You are documenting the fun time you're having. If your face is funny- you have captured the fun time you are having while making a funny face. Why are you taking it so seriously? (I mean- I'm no idiot, I grew up in the US as a girl- I get it.) But for real, fake it if you don't believe it yet. Talk about yourself like you are a goddamn movie star!

2) Body, Not appearance

Think about it this way, if all of a sudden you could hear turkeys talking and half of what they talked about was the size and color of their feathers, weird thing on their throat, whatever, you would be like: DUDES- NO ONE CARES. That's us. We're the idiots. 

Now, can you take those feathers and make art with it? Absofuckinglutely. I want to see Turkey artists now... 

You ARE art! But you are not a commercial or a product. You get me? JOY with art.

So when you talk to your kiddos about their body: talk about function (and art if they like that). Your nose is to smell. Your ass is to cushion your sitting and expel the literal shit your body doesn't need. (Maybe use different words). 

Try to make your language and conversation around bodies be about the actual body, and not always the appearance. It's such a default for us. Lips: LUSCIOUS. No- speaking, eating, kissing, delish. See the difference? It's so much more fun to see the body as this masterful organism that does SO many cool things (we self-heal- that's amazing). 

3) Normal Real Words 

Do use normal words, please for the love of all that is holy. There are VERY real safety reasons why your kid needs to know the real words for things, but also it's just annoying when a kid says his "boo boo" and his means his penis. Like- I was looking for a scratch but now I'm confused. 

ALSO- and this is especially for girls, please teach them what is actually in their body - I still look at a chart of my lady organs and get lost. I know there are books that help with this. Check those books out of the library. 

Talk about bodies with real words, real functions, and real joy. 

Think about the Wild Kratt brothers and how geeked out they get about the immortal jellyfish - do that with your own body. (Go look up those guys- they're delightfully cheesy.)

I'm sure there's more to this, but I ran out of steam. 

If you haven't figured it out yet, a lot of not being an asshole to your kids is really not being an asshole to yourself. If your kid asks you if the microwave would work when the power went out, refrain from making them feel like an idiot. (It was hard, but I did it.)

We all have said and done stupid things, your home should be the SAFEST place to be an idiot. Make it safe for yourself too.

 

 

 

 

 

 

 

 

 

 

Friday, May 21, 2021

Shame Flare

My hands are still shaking, I've poured myself a glass of wine. I tell myself: it's fine, it's not a big deal, just breathe. All those are right except it is a big deal. Right this minute my body is flared up like that feeling you get when you're embarrassed and the heat rises up through your throat, surrounding your neck like a turtleneck of choking shame.

I decided to write in this moment because my body forgot how to cry. I started to cry but then I shut it down with the German efficiency that my German body is trained for. 

"Is that the young lady I spoke with on the phone?!" said the chief from the fire department. 

No sir, I am the shame-spiraling deaf woman that just wants you to tell me if I should be afraid to go to bed tonight, because I can't sleep well with my hearing aids in and I probably won't sleep well anyway with them out. But sure, patronize me and call it friendliness.

The carbon monoxide alarm went off. I'm at a friend's house, trying to do a writing retreat. What a fantastic idea. I am by myself and I have done so many things by myself. Hell, I flew to Germany and stayed in Berlin a whole week by my fucking self. 

And now I'm wondering if I have been so stupid all this time. If the alarm was telling the truth and it went off at night, do you know what would have happened? Death. I mean- not to be dramatic, but I wouldn't have heard the alarm and I would have slept until my body died or woke up with severe enough symptoms. 

Right now I'm sitting in the house, doors and windows shut to make sure the false alarm was indeed a false alarm. 

When I called the fire department, they answered with quick words, a sense of humor "Your house is on fire?!! Haha- just kidding." I just wanted to feel safe. I'm taking care of three animals that I have no known way of moving and transporting. I can't just leave the house and them. 

The first time I called, I thought that the final words were "we're on our way." I heard him say something about 911 and asking me more questions, and I was like- I don't know why he's telling me about this, he's on his way. 

I made sure all the windows were open - the cats wouldn't be harmed - and I sat on the front stoop for 30 minutes, missing a meaningful call I had scheduled for myself as part of my self-care for the writing retreat. OH- and the alarm went off during my therapy session and it was my therapist who told me what the alarm was saying.

That's the other thing. When I called they asked me so many questions: how many times did the alarm go off? How frequent and many were the beeps? 

I didn't know- a lot? 

What did it say? 

Something about carbon monoxide? 

How do you feel? Do you have a headache? Nausea? 

I don't think so. I had a headache earlier. (I almost said- but I'm a 40 year old woman, so that tracks. I didn't.) They don't have a clue that many women feel headaches and nausea intermittently without being poisoned. 

I finally went back inside from my front stoop perch after realizing that I was not the top priority. I decided to just wait- but by the window. No writing was being done. I waited, trying to decide if I had a headache or stress. Anxiety or carbon monoxide poisoning.

I finally call back: no one home, voicemail. I left a message. Now I'm afraid they'll hear that message and make fun of it. "That's that woman who was scared of carbon monoxide."

Nothing.

It was two hours past the first call and I knew that I would not be able to sleep at night if no one came to check. If I sleep- I lose consciousness and control. I can't hear. I felt so vulnerable and I absolutely HATE feeling that way.

I called again, this time the jokester picked up. He talked so fast. I told him I had called and no one came out. He said- yeah they came out. Nope, no one did (oh God did I actually miss the fire dept?!). When did I call 911? I didn't- I called you. Then he asks why or something and I said: "I can't hear, I thought the person said they were on their way." 

Shame flare is in full force now.

"Where do you live again?" I tell them where I'm staying, it's not my house. More talking, more words, I can't track it, what are they saying? Are they coming? They're talking so fast, I tell them I'm having trouble hearing them.

How do you feel? You've been in the house this whole time? You're probably fine.

I'm fine, I guess, but I've been sitting next to an open window. 

Well- if the windows are open, the alarm won't detect anything now! 

OH MY GOD, I know, I have cats here that I can't move and I didn't want to endanger them. 

If you feel fine, you're probably fine, you can call 911 if you need to. 

I don't even know what I said, but I said, I called YOU. I don't know if it's an emergency, I don't want to try and see if I get sick. I can't go to bed tonight with the windows all open and hoping for the best. 

Phone shifts. This is the chief, when did you say they came out to your house?

I've been handed off. I'm a problem. 

They didn't come out to my house, repeat repeat repeat everything I just said. 

He asks more questions: how many times did it beep? Can you hear gas? 

I don't know if I made this clear: I CANNOT HEAR.

Ok now, here's what we'll do, I'm just going to come over and check it out myself.

Patronizing, but I am finally getting results.

He pulls up in the fire truck, says his "young lady" comment, I don't give him the smile he was aiming for, and he walks in. He has to repeat himself four times, and I think he is finally understanding that I can't fucking hear. He looks at me when he talks, starts to treat me a little more human. He explains his gas meter, that nothing is detected, and that it's OK. He tells me what to look for and what to do if something happens.

Another man in the group is smiling, almost a snicker, and the chief smiles knowingly back. Like a cute little inside joke they all have about this young lady here.

I can't wait for them to get the fuck out of my face. Thanks so much, bye.

They leave. The door is left wide open.

Tears try to come and they stop, just short. I feel it instead throughout my body as it trembles, flares, tightens, and desires a glass of wine. 

I poured myself a glass and tell the universe to shut up if it disapproves. All the windows and doors are shut, the blinds drawn, and I don't even have the satisfaction of a good sob.

I'm scared of what else I am so vulnerable to. I'm mad about that. I'm angry they made me feel silly for needing information, needing to know if I would be OK or not. They don't realize I don't have all my senses available to me. They don't realize I sleep like the dead because of my hearing loss. They don't realize that I just thought about being dead because of my hearing loss.

I feel stupid. Dumb. Vulnerable. Mad. Angry. Pissed. Helpless.

That was my shame flare.

Monday, March 8, 2021

How to Be a Better Parent: Lower Your Expectations

I'll start this article with a caveat like all sophisticated writers do (they don't): I am not a child psychologist. I have two children, both are healthy in mind and body as far as we know. I have no idea what it is like to parent a child that is not one of my two children. 

So, obviously, I know exactly what you should do with yours.

Here's the deal: I live in Northern Virginia (NoVa for locals). If you don't live here, it's the suburban area southwest of DC in Virginia. It's home to one of the top-rated school systems in the US. Our neighbors are government officials, politicians, government workers, military officers, business owners, corporate execs, medical professionals, and I'm sure a handful of shady folks who make a lot of money unethically. 

There are folks from all walks of life mixed in. It's diverse here in almost every way. The cost of living is sky high, but the demographics and household income vary greatly from town to town and block to block. But, as a monolith, NoVa is stereotyped as a wealthy, highly educated population with at least an osmotic taste for politics. In my experience, this stereotype is pretty close to accurate.

What happens when you get a bunch of rich, educated people together? 

Miserable kids.

But really, the kids here are truly not OK. 

My husband and I lived one town over in Fairfax at the beginning of our marriage, before moving to the Tidewater region of the state, where everyone moves about a quarter of the pace of NoVa. We visibly relaxed after the move. My husband even felt a little like he was being lazy because he was so used to the breakneck speed of NoVa life. I told him NoVa speed wasn't a forward motion, but a spinning vortex.

After four years in a beach community, we got a call about a job back here in NoVa. It was a good opportunity and we'd be stupid not to take it. But both of us had the same thought: we have to protect the kids!

We wanted to protect them from the poison of perfectionism, performance-driven everything, and the insanely high expectations that the culture of this area has put on the children. This is the land that grooms astronauts, olympic gymnasts, doctors, and lawyers. Success happens. A lot. Mostly because the kids have no other choice. I mean, maybe they wanted to be those things. Here in NoVa, if you want to help a kid excel at something, there is a program or tutor or arena there for you. This is seen as a good thing by most people: opportunity breeds success! 

Yes, but at what cost?

I'm gently hugging the border of hyperbole in my descriptions here, but you have to understand that it is not a big stretch from reality to exaggeration. I know that we are not the only community that has this culture. In fact, it has become sort of a suburban nightmare across the US. I don't know if it's because my generation was told "you can do anything!" and has discovered that they didn't do everything, so now it's our kid's turn to try? I'm sure there are actual sociological and psychological studies out there about this. 

But I'm just a parent of my two kids, and I think I'm doing a good job, so I'll share my experience and see if it resonates.

They way my husband and I have endeavored to combat the insanely high expectations of the community on children... is to have really low expectations for our children. For clarity, I don't mean I have expectations that my kids will "perform low" (whatever that means), I have less actual expectations. There's a key in that subtle difference.

My children are very smart. One of them is in honors classes, but we didn't put him in the extra-honors math class (yes, this is a thing), mostly because he didn't want to. And also we didn't want to. I hate math, and I don't want to learn it all over again to help teach my 12 year old something that he has never expressed an actual interest in. He can do it, but should he? We decided no. This is what I mean about less expectations. Do I expect that the kid *could* succeed and do the math? Of course! I know he can. Do I expect the kid to be a math superstar? No, because why? I have placed no expectation on how "high" he should go with math, or how hard he should push himself, because I don't have any expectation that he rival Einstein in mathematical success. Here's the thing: if he was a math genius, he likely would have chosen that class (or not). Actually, if he were a math genius, he probably would have found a way to be successful with or without it. 

This "lower expectations" method is slightly frowned upon in these parts. Don't get me wrong, there are plenty of parents like myself who also make these choices to skip out on higher level "opportunities," but I have a nagging feeling it is so their child can fully participate in all their other extra-curricular activities, or focus on their "thing." 

This is a tangent for further discussion, but why do we force children to specialize their interests at such a young age? Why can't they literally play around with all the different stuff and never choose any of it? Isn't that the point of childhood: playful practice? Yet so many of us feel like our kid must pick a thing (or four) and stick to it to show their commitment and responsibility. But really, why? Does a 9 year old really need to learn how to show the kind of commitment on par with a sacred vow? Why do we want kids to "stick with it" so badly? Do we feel guilty that we didn't play tennis longer, or stay on the swim team? I bet you do actually feel guilty about that, I do a little bit. But guess what, maybe you were not meant to be a tennis player or professional swimmer. In fact, maybe your quitting saved you from having 5 shoulder surgeries like one of my friends who grew up here in NoVa and "specialized." Also, I'm sorry those lessons cost you money, but if you expected every investment to have a life-long return, you should probably stop investing so much money into a child's play. Let them play without making it about giving you your money's worth. Let them play without projecting your own regrets on to them.

Part of what makes these lower expectations feel so wrong to many parents, is that we feel like we're lowering our expectations on ourselves as parents. If we don't sign them up for all the things, we're the lazy ones. I bought into this for a while. I can't even tell you what the magic turning point was for me, other than my kids continually didn't want to do all the things and I continually didn't feel like fighting it. I was forced to relax about it, and when we were all happier, I found the freedom in it. I decided that it was not only OK to lower the expectations, it was GOOD.

You know how many extra-curricular activities my children have? None. I mean, none that are constant. They've both taken classes with the local rec center, they've both done nature camps in the summer, they've both attended church and some of the programs associated with that. My youngest likes basketball, and as long as he keeps liking it, he'll ask to sign up for the next session. He mentioned last year he might want to try soccer. OK. My oldest doesn't like sports. Fine. Don't do them. He takes walks daily and seems physically fit.

When the pandemic hit and children and parents alike were devastated by their sudden absence of extra-curricular activities, my kids were like: cool, more time at home. This isn't a judgment, I remember wondering if I was a bad parent since my kids didn't really have much to miss. I was second-guessing my "lower expectations" motto. Was I depriving them of a well-rounded life? Should I have pushed them to commit to more activities or at least choose one to hone in on? Should I have pushed them to at least try more stuff?

I've decided, no. 

(I'd like to note how weirdly twisted it is that my kids' happiness in the face of difficulty was a moment for me to wonder if I'd done something wrong as a parent.)

I have once again decided that I'm a great parent to my kids. That is not specifically because of my choices (or lack of activities for my kid). I mean, that's how I roll, but more importantly, it's how my kids roll. Their resilience and how they have risen to the challenges this past year reminds me that I haven't been "spoiling" them or keeping them from cultivating commitment and perseverance. They have persevered better than my husband and I!

I think I'm a great parent *to my kids* because my kids are enjoying their childhood as far as I can tell. I know that other parents make different choices based on their kid's needs. By all means, get that kid in all the baseball games, let your dancer dance in all the classes. Maybe their kid is the kind that needs a lot of social interaction or physical exertion, great, as long as the play fits the kid, I think we're in good shape.

Being a good parent is less about setting expectations, and more about believing and trusting our children to be... well.... our children. We don't need to micromanage their childhood.

My oldest really likes Marine Biology. A lot of his books are around that theme, some of our family outings are geared towards that, we invest in memberships to aquariums and that sort. He still likes Marine Biology, and we still give him opportunities to learn more and see more. 

But there's no pressure about where that will lead. 

I mean, I did tell him if he ever owned an aquarium, I want an apartment with a wall of fish or Belugas or something. He agreed to this arrangement. I am supportive, but I'm not whispering in his ear everyday "One day you will discover the key to the next revolution in Marine Biology!" No, what I say during the documentaries that we watch is, "that looks fun, maybe that's a job you might like in Marine Biology." But if he says "nah, I don't want to do that," I say "OK." Let him lead his life.

Same with my youngest. His current career goals are to partner with his brother at their future aquarium, be a professional basketball player, or a pastor like his Dad. I have said "cool- those all sound interesting!" I secretly do not want him to become a pastor because it is a ridiculously challenging job. But if he wants to, I won't stand in his way. I suppose I'd have to answer to God if I did. 

My guiding principle right now in parenting my kids is allowing them to follow their curiosity. I try very hard to keep my expectations of how long they stay curious about things to myself. I stay low budget on how much I assist their curiosity (I've been known to splurge from time to time, probably because I'm curious as well). If they're curious, they'll explore and engage. If not, they can follow their nose to another thing. My kids don't need to decide their career path right now, they don't even need to decide their hobbies. Nothing they experience or learn will be a waste.

My hope is that they learn that there are some things that hold their curiosity, and that it's fun to delve deeper into something like that. I hope that they learn that the world is full of amazing things to be curious about. I hope that they learn that you can do what you love as a hobby, a job, or a calling. But it doesn't necessarily need to be all three of those. 

Maybe my oldest decides he likes a job that isn't based on his curiosity, but more his skill set. Maybe he will be an accountant. Then he can go on exotic trips all over the world to see and experience different marine life. That would be OK. (My uncle teaches computer science and his hobby is underwater photography, it's doable!) Or maybe my son does want to be a scientist and discover new things, also great. Honestly, maybe he decides marine biology is just something he knows a lot about and he finds a new curious path. Also fine. 

I wonder how much of my vocational discernment might have been made easier if I didn't put so much pressure on it to be EVERYTHING: calling, career, passion. Or to be the BEST at the thing. 

I don't know, but I do know that this last year when all the extra stuff was stripped away, my kids adjusted pretty well. Not because they are better or I am better, but maybe it was because their identity and lives are not defined by what they do, and more by who they are. They are still two boys, playing video games, going for walks, doing chores, sword fighting with large sticks, creating paper crafts, reading books, complaining about longer walks, whining when we drive so that their parents can get a change of scenery. They feel like real kids who aren't worried about falling behind in something. They feel like, well, my children.

So, for what it's worth, I wonder if being a crappy parent like I thought I was, might actually be a good thing. Invest less. Do less. Expect less. Then they can grow and flourish without the weight of our expectations.

In a way, this "lower expectations" method is simply a way of trusting our children to be themselves. If we trust them, they will have the confidence to become who they want to be, and that is more than good enough. 

Tuesday, March 2, 2021

Body Grief, Part 2: Spinal Cord Injury

When I was born, I was born with a narrow spinal canal, which I wouldn't know about until middle school when something happened that bruised my spinal cord. My fingers itch to tell you that it's not a big deal. I'm totally fine and it could have been so much worse. I could have been paralyzed or something. It's a non-thing. 

But, my grief has something to say about it. She's actually got a lot to say.

I was born with a narrow spinal canal. Because of that, I bruised my spinal cord at the age of 13 by dancing hard or maybe it was when I fell that one time. I'm not sure, but it happened when most kids are working on perfecting daring jumps and pool dives. Instead of talking about puberty and figuring out what it means to be a woman, I was in and out of doctor's offices for two years to have them tell me that my numb fingers and tingling body was maybe growing pains, or in my head. Maybe it was Lyme's disease. Maybe it was something wrong with my brain. Let's take another MRI of your brain to be sure... I would stump the doctors who repeatedly said that they never saw anything like this in someone as young as me. When they finally took an MRI of my neck, they realized that I was suffering from a spinal cord injury.

"Someone your age shouldn't...." is not a phrase you want to hear.

In the pivotal moment of learning about my body and its changes, I learned that I couldn't trust my body and that changes were bad. I learned that my youth had not saved me. I learned not about my mortality, but about my frailty, at 13 years old. Weirdly, that seemed worse.

I learned at 15, before my first surgery (after they finally figured out what was wrong with me), that I was a "walking time bomb" and that if I had so much as a whiplash, I could easily be paralyzed from the neck down. After that information was shared, they scheduled my surgery for a few weeks later.

What was wrong with me? I was born with a narrow spinal canal (congenital spinal stenosis), and had bruised my spinal cord, which I only recently made the realization is categorized as a "spinal cord injury." The doctors always talked about my spinal cord as being bruised, but I think that was their way of making it feel less scary to me. Note to self (and any of you): call the condition what it is, because it helps in the future. It is a spinal cord injury to my C4-5 area, and my symptoms are consistent with that term.

My first spinal surgery was a brutal one. Military surgeons are not the best of the best, and that actually does make a difference when you're getting spinal surgery.

I remember going in to the pre-op room, along with others in their hospital beds, we were lined up and waiting our turn with the anesthesiologist. As a 15 year old, I had never broken a bone or been to the ER; hospitals and surgeries were new to me. I was worried, how could I be sure that I wouldn't feel anything? The man next to me was waiting his turn to go in for knee surgery. He was a giant man, with a hearty smile and comforting words for me. I don't remember what he said, but I do remember watching him fall quickly and deeply to sleep within seconds of the anesthesiologist walking to his side. I thought, well, if they can put that guy out that quickly, I should be good. And I don't remember anything after that until I woke up post-surgery. 

The surgeon did a laminectomy of C3-C6, which means the back of my neck was rendered boneless for three notches, my long neck like a stack of horse-shoes, with no other support but my neck muscles (which had all been cut through).

After my first surgery, I was homeschooled during recovery with the help of a public school aid who visited once every week or two. I did work from my couch, although I don't remember it being that much. I remember that I failed a test that was given right before my surgery, which alerted me to how nervous I was (I was a very good student). My "homebound" teacher told me not to worry about it, and the test disappeared off my record.

I came up with clever ways to maintain some independence. I used a compact mirror to see around me since I couldn't turn my head. I had a whole station at my side of all that I needed: the remote, a drink with a straw, my mirror, and some books. My Mom was always there if I needed anything. My older sister was a little annoyed that I wasn't required to help clean up. She had no understanding of what spinal surgery entailed or what the recovery was like. All she knew was that I was lying on my butt, asking for things and getting them. 

I remember the day my mother helped me take my first post-surgical bath. We took my soft neck brace off to clean my imprisoned neck, and when my mother wet my hair to help me wash it, the mere weight of my hair pushing down on my neck caused me to cry in pain. We had no idea hair weighed so much, or that my neck was so weak.

There was no physical therapy. No follow up, except the surgeon (who was kind) who told me he could see my spinal cord breathe when he removed the bones from the back of my tight spinal column. The surgery was not a corrective surgery, the spinal cord damage had already been done. This surgery was to prevent future injury or risk of paralysis. The surgeon mentioned in passing that I might get a thing called "swan's neck" when I was old and grey. I, with my "I'm fine" attitude, said "who cares if my neck bends when I'm 80; I won't care what I look like."

No one corrected my understanding of what "swan's neck" was.

When describing my symptoms, which usually followed a curious friend's question about my scar on the back of my neck (very Frankenstein-esque), I would try to tell my story as succinctly as possible. There was no elevator pitch story about my neck, and I grew tired of telling it and trying to make sense and be accurate. I used to tell people my symptoms were like wearing a thin glove over my hands at all times. I stopped telling people about any of it because it was so hard to explain, and took too long. I could tell people lost interest pretty quickly, and I was basically over it myself.

Besides, it wasn't a big deal. It was in the past.

Five years later, I was 20 and in college. I'd fully recovered from surgery, but the numbness from my bruised spinal cord had become my new normal. I couldn't put earrings on unless I could see them clearly in the mirror because my fingers couldn't feel the tiny backings. It was a lot of work, so I decided that I would only wear the earrings that hook on. Eventually I gave up even on that and decided not to wear earrings at all. My ear piercings have closed up. Any jewelry with tiny clasps are out. Playing the guitar is not a real possibility. Anything that requires dexterity is off the books for me. 

By 20 years old, I had given up tiny things, lots of little tiny things.

Then, I started to feel even more numb, my pinky fingers became like extra appendages that I had no control over. I was more tingly. My typing was slower, because my hands weren't responding as well, they were more clumsy. I struggled to tie my shoes because my hands just wouldn't work efficiently. I struggled to walk with my normal stride because something wasn't quite right. My brain felt like it was not in clear communication with my body and it was weird and frightening. But I ignored it. 

My sister, who was with me at the same college and saw me struggle, ratted me out to our mother. I said that it was nothing. It was so subtle and slow that I couldn't even tell you what was different. I'd completely forgotten what normal felt like. I knew it was getting worse, but I was afraid of what that meant.

With the new symptoms, my surgery wasn't in the past anymore.

I found myself in the office of yet another neurosurgeon. It was in this office that I started to understand just how bad my first surgery was, and just how complex my problems really were. Every 20 year old wants to hear: "Wow, you're young to have this problem. Your last surgery was a hack job. You need another surgery." I thought, "this is a bigger deal than I thought it was." I hoped that whatever this surgeon did would officially close the chapter on my neck problems.

This happened the summer between my sophomore and junior year of college, when I was trying to figure out what I wanted to do with my life, what dreams I wanted to follow. With my whole life ahead of me, I got this reminder: You are not strong and young, you are fragile. You thought that surgery was a one-and-done, but you were wrong. You can't hide from your body, it will fight you and fail you again and again. You are not like the rest of your friends. You were already different, and now you're even more different. 

You are fragile, so so fragile. 

This surgeon was one of those fancy south Florida surgeons that makes the medical journals. The surgeon got to do something new and fancy, just for me: a medical anomaly. With my hearing, I had my sister to commiserate with. With this, I don't even know where I would look for someone with. common experience. 

I remember medical residents coming in to see the doctor demonstrate my over-active reflexes. I was a teaching moment, a fun weird thing for them to see. I gave permission, but I wondered why my reflexes di that. No one ever told me.

I had my second spinal surgery fairly soon after my appointment with the fancy surgeon. The reason I needed the surgery, the reason my symptoms were increasing, was because my neck was bending; that swan's neck thing was happening way before I was 80. The missing bones in my neck were the culprit. My neck muscles couldn't do all the work of holding my head up without the literal "back bones" of my cervical spine. So slowly my neck had been slouching, bending, sighing down under the weight of my head (I promise my head is a normal size). My spinal cord was squished against bones that were straining to hold my neck straight like a superhero under a giant rock, saving my spinal cord from doom. The bones needed help. 

For folks who need a visual, put your hand out, palm up and flat. Imagine a pencil (or get one) lying straight on that hand: eraser at your middle finger, lead tip at your wrist. Now start to curl your hand up, like a cup or how you'd hold a little trinket in your hand. Imagine that pencil isn't supposed to move (and also doesn't). The parts of your hand that curve are pushing on to the pencil, especially at the top and bottom. Your hand is my neck (lying down) and the pencil is my spinal cord (getting squished).

What I needed was a little straightening out and extra support. The surgeon went in through the front of my neck this time, which would significantly decrease the post-surgical pain, compared to what I had experienced from the last surgery which cut through all the muscles in the back of my neck. This new surgeon straighten my neck by fusing the existing bones to a straight cadaver bone (no idea where it came from) with fancy flexible screws he invented, straightening out my C-3-C-6. My cervical horseshoes were now welded together in a straight stack.

I remember in the recovery room right after my surgery, I was given a phone. They told me it was my Dad, so I said "Hi, Dad!" I heard my Dad say "Hi" back, but his voice was squeaky and strained. I'm not sure I have ever seen my Dad cry, but I have heard emotion in his voice, and this was the first time I heard it so clearly. It hit me then that perhaps I should have been more worried going in to this thing. If my Dad had been scared, it was a big deal. 

I treated my surgeries as "this thing to get over." I didn't really process what I was feeling, I worked hard not to feel anything, to skip to the end, to recovery.

The first day in the hospital I was visited by both the occupational and physical therapists. I was severely nauseated by the mixture of powerful pain medication and limited food. It was a vicious cycle, not feeling like eating because I was nauseous, and being nauseous because I hadn't eaten. When the OT came in and wheeled me to their therapy room while I had a wet rag to my head, I may or may not have told them their vocation was a huge waste of time. They wanted me to use tweezers to pick up beads and put them in a cup. I told them I couldn't do this task before the surgery and had no interest in spending time doing it now. Then I threw up, so they took me back to my room. The PT was a little more helpful, she taught me how to get out of bed without putting too much strain on my neck, a method I still use out of habit today. 

I also received a phone call to my hospital room from the insurance department telling me my surgery had been refused coverage by my insurance company. Luckily I was still under my parent's insurance and did not have to bear the burden of that news, only the confusion and frustration of them calling me mere hours post-surgery to tell me that. (Long story short, the insurance did cover it.)

I was discharged and rode in the back of my Mom's minivan home for the two hour drive from Miami to my parent's home in south Florida. I laid flat in the middle seat, with my Mom supporting my head and my older sister driving. Every bump was agony. I tried to put on a brave face. I realized how traumatizing that must have been for my sister, so I texted her and she has no memory of it! So funny.

I wore a hard neck brace this time, with strict instructions to keep it on and not move my neck. The bone needed to fuse over time, basically like a slow welding inside my neck. My mother and I had learned our lesson and this time took hair-washing much slower. 

I did make the rookie mistake of taking it off while lying outside in the sun, airing my neck out and trying to catch a tan. I now have a nice reddish scar on the front of my neck that glows a little if I've had too much to drink. 

My neck brace stayed on the duration of the summer. At one point I was healed enough to travel and visited my grandparents for what was the last time I would see my Grandfather (Opa) alive. He had Alzheimers, but he remembered us. and did not seem thrown off by the fact that I had a neck brace on. One afternoon we sat on a bench waiting for my parents to pick us up, two invalids. It was a sweet, sweet moment with just the two of us. We sat there on this mild summer day, watching the trees swaying in the wind, as the birds chirped and the sun shone down on us, and Opa gestured towards all of it, saying "I'm so lucky to be here, isn't it so beautiful?" I'm so grateful for that moment, even with the neck brace. It's my last memory of Opa.

My recovery was much easier after this surgery, but it was still a long haul. When it was time to go back to college, I was hesitant, feeling like I had only just healed. My sorority at the time was hesitant to give me a pass on "Rush" week. I barely participated and felt guilty like I was using my neck surgery as an excuse not to do anything (even though I hated Rush in the first place). Looking back - what the actual hell was I thinking? Of course I shouldn't have done any of that! I had just had SPINAL surgery! 

After each surgery I felt fragile, like I would never be whole again. And yes, I did heal, but I think I fooled myself when I said I was 100% back to normal. No I wasn't. I had missing bones, a fused spinal column, screws in my neck that I was terrified would set off the airport security checks. (They didn't.) And my muscles were still tired. My hands were still numb, even more so than before, the damage again was done, and the surgery was again preventative, not corrective.

I told that surgeon: "Thank you, and I never want to see the likes of you again." The surgeon seemed confident I was never to return. Which was true, I would never return to him again because life goes on and you find a new neurosurgeon in your current town the next time something happens. Which apparently, there is always a next time once you start messing with the spinal column. 

No one told me that.

Fast forward over ten years, I'm a wife and a mother with a master's degree. 

I woke up in the middle of the night with excruciating pain in my right arm. No warning, just shooting pain. I couldn't adjust anything, crack anything, take anything to make the pain go away. At first I thought: wow, this is the next level of sleeping on your neck wrong. Then I started to realize: shit, no, this is something more dangerous. My right hand had become significantly less functional. This was my neck doing its thing again. I had allowed time and my two healthy pregnancies temporarily blind me to the frailty of my body. 

Off to the neurosurgeon I went. This time on my own insurance, with two children, and a husband who had never seen a person close to him go through major surgery. 

I was smart, got two opinions. Neither of them suggested anything other than surgery. The only difference was the type of surgery. This time was different. This time I had pain. Apparently I was "lucky" that hadn't happened before. I had a disc at the bottom of my neck pressing on my spinal cord, popped out by the pressure of holding up my head without any help from the discs that had disappeared so many years ago. Once I settled on the surgeon, he said, we need to move quickly, you may lose the use of your right hand if you go too long. So on a Monday, I scheduled my spinal surgery for that Friday. 

A discectomy with a fusion of C6-7 going through the front again. Two scars, almost perfectly lined up on the front of my neck. 

I got to the hospital that Friday morning and said "I'm here to get cut up." The receptionist was notably shocked and said she'd never had anyone say that to her. I felt like saying, well you've never had me, so here I am with my morbid humor, trying to make my way through my third spinal surgery. Also, really, no one had said that? 

My Mom was there, as she had been for every surgery, it would be a strange bond we would have. This time she was there more as a support to my husband, and to be with the kids. I went in for surgery. I didn't allow myself time to think about things or feel things. I was focused on the pain and the hope that the surgery would relieve it.

When I woke up, I saw my husband, Jason, and my Mom walk into my hospital room with looks of anticipation, and concern? I said "Hi!" And they both laughed and smiled and visibly relaxed. Apparently, while I was in the recovery room, the surgeon had told them I wasn't talking yet, and he noted that he had to really move things around in my neck, so there was a slight chance my voice would be different, or maybe perhaps, gone. You know, small side effect. My speaking was a relief to them. I had no idea that was even a risk I had taken. Of course, the other risks like paralysis were more prominent on the list of mentionables.

I had been told earlier that I may have to wear the kind of neck brace with screws in my head. I was.... not looking forward to this possibility. I didn't end up having to do that, although the surgeon never really indicated why. He did say my bones were like butter, and not in a good way. Everything was very fragile in there. But as all neurosurgeons say when they're finished: "I fixed it and you're good to go!" 

The nerve pain did not go away immediately. The surgeon said it may take some time, but it "should" go away. I had spent a few weeks incapacitated by the pain, and now in recovery, I was still in pain with some extra incisions. I was terrified that this could be my new normal, and that the relief would never come.

One morning, about a week after surgery, I woke up, and the shooting pain was gone. I was afraid to even sit up, because I was afraid it would break the spell. I knew that the morning was a good time to judge if the pain had gone because usually the pain relievers had started to wear off by this point. I sat up, and the magic remained. No nerve pain. I started crying, calling my mom and my husband in to tell them the good news. 

The next time I cried, it was after my sweet boys had danced around me, but very careful not to touch mommy, because if they jumped on me or tried to hug me in their usual rough way, my fusion might be jeopardized. So they were trained to be gentle with me. I cried because I missed them. They were there, but at arms length. They had to be so careful, we had to be so careful, that I felt like I had some invisible bubble around me. I was so tired of being fragile. SO tired of it. I didn't get to fully participate in the life right in front of me.

In due time, I healed, and my surgery became another memory I would tuck away and put behind me. I asked this surgeon: "I should be done now, right?" He said I should, and that it wasn't common for the discs below the sternum (past the cervical spine) to buckle under pressure. Essentially, now that my entire neck was essentially fused, there wasn't anything left to pop out. The next set of discs were supported by a larger system than just neck muscles.

About a year or two later, after working full time as a hospice chaplain, my hands started doing something weird. If I leaned to one side and put weight on my elbow, they would go numb or twitch. I went back to my neurosurgeon who told me the medical equivalent of "stop doing that." He said I basically had a wonky nerve now, it had been messed with to the point where now all the signals were a little crossed and electrified. Any slight pressure on the nerve would be translated exponentially into some sensation, be it numbness, twitchiness, or pain. He said if the wonkiness turned to pain, there are procedures that could be done to remove the nerve from the elbow where it was getting tight. I was like, seriously, I'll just "stop doing that." I still have to be mindful of the positions of my hands and arms, I even have to switch my hands often while driving, because I mindlessly rest my elbows on the door or armrest, making my hands weird.

I definitely can't lie sideways like the French girls, I'll get numb hands. Super sexy.

I moved to a new town, and so far I have not had to have any new surgeries. *knock on wood* However I have had a few MRIs, where they found a herniated disk in my lumbar (lower back) that gives me mild pain on good days, and the week of Thanksgiving when I was hosting my family: major pain. Fun.

Strangely enough, the first time I really came to grips with all that I have lost to this narrow spinal canal, was when I was painting our family room a few years ago. I am cheap and stubborn. So when I wanted to change the color of my family room, I decided I could do it all by myself, thankyouverymuch. 

So I did, but what would take a normal person a day or two at most, took me a week. I was so angry at myself. I got so tired so quickly. I couldn't keep my head up long enough to paint the top trim. Like, I literally couldn't hold my head up. I had to hold the back of my head with one hand while painting with the other, and then switch when my hand got tired.

Then, and only then, did I stop and think about why that might be the case. And why this wasn't normal.

When I finally got down and took stock, I realized, holy shit, I've had to hold my head up with my hands for hours to look at what I'm painting because I have had three spinal surgeries. My neck can't look up for long periods of time. It just can't. My back was aching because it's jacked up. I've "thrown it out" at least three or four times and I'm not 40 yet. 

And that's when I realized that I should not physically be painting a family room. 

I need you to know that I literally had not considered this. I was so in denial of my body's history that I did not understand why I had to hold my head up. I was fighting myself because I was so worried that I was just being lazy. Instead of listening to my body who was saying "STOP DOING THAT!" I just pushed forward until all I could physically do was lie exhausted on my back in the middle of a half-painted room. And I felt guilty! Lazy! Why couldn't I paint a damn room?! 

I think my denial was partially a result of my continued adjustment. I have become a master of adjusting. I'm so good at it that I don't even realize I'm doing it, or why. With my hearing loss, I have been over-performing physically every day of my life in order to be as close to normal as I can be. So of course the normal warning signs like exhaustion and weariness were lost on me.

Here is what my grief has to say about that: I'm *so* tired of adjusting. 

I've adjusted everything to be able to hear people and engage in conversation. I have adjusted everything to be able to physically move and function without things being too difficult or cumbersome, and without needing any help. I'm constantly adjusting down, adjusting to function at increasingly lower levels. I'm so tired of it. I'm tired of needing to hold my head at the end of the day because my neck muscles are tired. This happens at the end of every day and I didn't even notice until the painting incident. I'm tired of lying flat on my back at night and feeling the pain radiate down my spine. I'm tired of knowing that I can't do certain things but still feeling lazy about it because I can't say something obvious like: I have "spine-weak-muscle-inconsistent-nerve-weirdness-ism." But that's not a thing, and my thing isn't a word I can say. So I continue to navigate whether I can do something, or whether I shouldn't, or whether I am lazy, or whether I'm wise for not trying. I still don't know those boundaries. 

I watch these dancers on the TV and my soul aches, my body just sighs. I will never be able to move my body like that. That makes me sad. I wish I could still do a back bend. I used to be able to do a backwards dive into the pool.

Now I have stopped doing all of that. And I miss it. More than I realized.