(Breaking the) Code of Silence

Published on November 22, 2015 by beatingcowdens4 Comments

The song by Billy Joel…

“Code Of Silence”

Everybody’s got a million questions
Everybody wants to know the score
What you went through
It’s something you
Should be over now

Everybody wants to hear the secrets
That you never told a soul before
And it’s not that strange
Because it wouldn’t change
what happened anyhow…

…And you can’t talk about it
Because you’re following a code of silence
You’re never gonna to lose the anger
You just deal with it a different way

And you can’t talk about it
And isn’t that a kind of madness
To be living by a code of silence
When you’ve really got a lot to say…

And as happens sometimes when there is a lot on my mind and I’m left alone with my thoughts, music creeps in. Today Felix and Meghan are on a youth retreat with our church youth group. They are spending the weekend. I cleaned a bunch, switched to the winter drapes and started to transtition into holiday mode. It’s been a few tough Decembers. After losing my Dad in December of 2013 and then in the fall of 2014 saying goodbye to Grandma Gen, Uncle Jerry, and our beloved Allie dog, I was intent on getting some time to get my heart and soul peaceful for Christmas. But, despite my best efforts and lots of early shopping complete, my heart is heavy with worry once again.

I know people will say you can’t worry and have faith. If that’s true then my faith needs some work. But, I think its my faith that keeps a leash on worry and keeps it far away from depsair. And for that I am grateful, although things are getting a little tricky here again.

I began this blog years ago with no expectation of personal privacy. I have been gratified by contacts made all over the globe, and have enjoyed having the ability to nudge people towards support or just read that our story gives them hope. But, then I began to write about my daughter. And we had tons of conversations about digital footprints, and things we can’t take back. She has been like a champion, willing to share her story through me in the name of education, advocacy and awareness. She wants a place where people can read about REAL people REALLY dealing with Cowden’s Syndrome every day.

Yet, in her day to day life Meghan is a bit reserved. She is careful with her words, and trusts sparingly. She is constantly aware of the different lens through which she views life, in light of her medical experiences. She is acutely sensitive to the fact that even the children who care, are unsure how or what to do if she talks about her real life. PLUS, so much of what goes on is hard for us to process. There is just no way to expect a typical 7th grader to go there. Heck, I can’t get the adults I confide in to wrap their heads around any of this.

November was supposed to just be me. Traveling to the plastic surgeon to determine if my right implant ripped, and scheduling surgery if needed. I go there Tuesday.

But, November has already been very busy. We met earlier this month with a new doctor, an adolescent gynecologist at NYU. She listened to Meghan’s story. A story that began with what we hoped was just an erratic start to a teenage menstrual cycle. She reviewed the ultrasound from July with the “abnormal endometrial thickening,” and she asked some questions to my girl. Who at 12 is clearly adult size, just shy of 5 foot 7 and a very trim 115 pounds. My girl had her notebook and answers.

Then there were more questions. Because since the middle of August there have been less than 10 days with NO bleeding. So there were blood tests to check hormone levels. And there was a repeat sonogram scheduled.

There was also conversation with this very young, very attentive doctor. A doctor who made no bones about researching Cowden’s Syndrome and telling both of us that she found 2 cases in the literature of Cowden’s patients with uterine cancer – mean age 13.5. Ouch. She told Meghan that she had some investigating to do. And then we would know more. We already had this information stored so the minds race.

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Cowden Syndrome

Approved by the Cancer.Net Editorial Board, 11/2014

What is Cowden syndrome?

Cowden syndrome (CS) is part of the PTEN hamartoma tumor syndrome. Hamartomas are benign, meaning noncancerous, tumor-like growths. Other clinical syndromes that are part of the PTEN hamartoma tumor syndrome are Bannayan-Riley-Ruvalcaba syndrome (BRR; diagnosed in children), Proteus syndrome, and Proteus-like syndrome. CS is characterized by a high risk of both benign and cancerous tumors of the breast, thyroid, endometrium (uterus), colorectal, kidney, and skin (melanoma).

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The ride home involved some of the toughest questions I’ve ever had to answer.

And then the hormone levels came back utterly confusing. The doctor said they make no sense. It didn’t gel with the tickened lining and the bleeding. It didn’t gel with anything.

And the ultrasound Thursday at 4 pm was read by Friday. Warp speed for you experienced parents. The doctor called me at 7 Friday night. The conversation led us to the necessity of a biopsy. Too many things aren’t right. “There is no formula, no plan to proceed in a child this young. We just have to trust our instincts.” I like her. She cares. But again, I’ve been doing Cowden’s longer. I have to be alert.

Welome to my world doctor.

We’ve heard this song before. “Could be…” “Maybe…” “We’re concerned…” and it’s been fine every single time.

It’s just the weather is getting colder, and after school trips to Manhattan hold no appeal. Missing work, making it up, racing to the swim practices she loves. We’ve done this all before. Different reasons. But there seems to be very little real break in between. And the pace is hastening.

This week is Thanksgiving. We’ll put the tree up. We’ll work on some cards, and I’ll help Meghan organize a few more things for the Jeans for Rare Genes Fundraiser.

Monday I should hear about a date for the biopsy. Hopefully. Then there will be at least 5 days after that date for pathology.

And the “Code of Silence” permeates a few other non Cowden’s areas of life.

This young lady I have is strong. She is funny. She is tenacious. She is a swimmer. She is an actress. She loves to sing. She is NOT Cowden’s Syndrome. But IT is trying to play dirty with her again. And I just don’t like it one bit.

We remain BEATINGCOWDENS!

(This blog, like all other ones of a personal nature, was approved by Meghan.)

AND WHILE MEGHAN CONTINUES TO DESIRE THE REAL STORY BE TOLD, PLEASE FAMILY AND FRIENDS, RESPECT HER “CODE OF SILENCE.” SHE WILL TALK IF SHE WANTS TO.

IF YOU ARE ABLE, WE WOULD LOVE TO HAVE YOU JOIN US AT THE 2ND ANNUAL “JEANS FOR RARE GENES” FUNDRAISER. A BRIANCHILD OF MEGHAN ALL PROCEEDS BENEFIT THE PTEN FOUNDATION AND THE GLOBAL GENES PROJECT. JUST CLICK THE LINK BELOW.

https://www.eventbrite.com/e/jeans-for-rare-genes-2-tickets-19343557100?aff=eac2

A Lesson in Brave

Published on November 15, 2015 by beatingcowdensLeave a comment

To My Girl,

This week we wait. Again. We wait to see how nasty Cowden’s wants to play, and in what ways you’ll need to show it who is the boss. Again.

You have every right to be frustrated. To be mad. To be fearful. You could be negative, and self-absorbed.

But instead you’ve chosen to be brave.

And I have no words to express how proud you continue to make me every day.

You are strong. You are brave. You are focused. You are successful.

I have learned so much from you, and I continue to learn.

Whatever this week brings, we will handle it. Together. Cause there is NOTHING in this world capable of stopping you.

Just remember if you need a hug, a shoulder, or an ear – I’ve got all three.

Love you my girl,

Mom

“BE the Change You Wish to See in the World” – Ghandi

Published on November 1, 2015November 1, 2015 by beatingcowdens1 Comment

With another fall season upon us, life is in full blown crazy mode. And, to be honest, we wouldn’t have it any other way.

Yesterday, my 12 year old FINALLY throughly enjoyed a Halloween. It was such a thrill to watch. FINALLY, she was able to trick or treat, EAT a few treats, AND keep up with some serious walking with friends.

Of course, she slept until almost 1 pm, even with the time change, and woke up unable to move her AVM knee. These are the repurcussions we expect. She is not “normal,” but when she can pretend for a while when it really counts… well that is a great success. And even as she lay still most of the day, she smiled. She sang. Joy.

Fall is full of things, and so far she’s managing nicely. With a marking period to end Friday, Pupil Path tells me grades are at an all time high. Practice 4 times a week has her swim times at an all time low. And, drama twice a week is leaving hopeful anticipation as “The Wizard of Oz” is soon to be cast.

She is working with me to plan our second fund raiser in February. We chose a date close to World Rare Disease Day, with the continued desire, and intention to bring awareness to our rare disease, and over 7,000 rare diseases worldwide that affect 10% of the world’s population. We are acutely aware that to be heard, we need to join collective voices. Individually we matter little to most of the healthcare system, overwhelmed, uneqipped to diagnose and treat us. Together is the only way we have a chance.

Last year we raised over $12,000 and donated it to the PTEN Foundation (www.PTENfoundation.org) and the Global Genes Project (www.GlobalGenes.org). This year we hope to exceed $20,000 in donations.

We have brought in Bob Jackson, a performer from Walt Disney World. He will be flying up to entertain our guests. Our whole family LOVES Bob, but Meghan especially will not hear of celebrating a birthday until Bob sings to her. We’ve spent her last 8 birthdays at Disney.

Here is a youtube video that is a great indicator of the FUN time Bob brings!

We have lined up sound with Partners in Sound, and we have Balloon Charlie returning to also help entertain the children.

We have established a children’s menu in hopes that families can enjoy the afternoon out together.

There will be raffles and lots of laughing.

There will be comfortable JEANS and good friends.

We are setting up a facebook group called Jeans for Rare Genes 2016 Staten Island, and we encourage you to join.

We have tickets to the event available through Jeans For Rare Genes 2 – Tickets and Donations link

Meghan is living life as a 12 year old who just happens to have had 15 surgeries. She is a 12 year old who just happens to have a Rare Disease. She is a 12 year old who realizes that as challenging as life is, so many others suffer worse. She is my hero. She is MY role model.

Together we will make Jeans for Rare Genes a thrilling success. Hope to see you there!

Time with “BOB” our favorite entertainer…

Recovery – Everything is Relative

Published on October 12, 2015October 12, 2015 by beatingcowdens1 Comment

recovery

(Merriam – Webster)

Medical Definition of RECOVERY

: the act of regaining or returning toward a normal or healthy state

Recovery. Is it a place? A state of being? A state of mind? Who knows? But, we spend a lot of time here. It’s really sort of a family affair, although without a doubt the one who takes the brunt of it is always Meghan. Four times in the last 10.5 months, and most recently three times in the last 6 months, there has been general anesthesia, and necessary recovery. That is a record for her that I pray she never surpasses.

In November and May it was the knee – one emergency, one planned. In between it was the hand. A pesky, tiny AVM, gotten before it got to be too big of a deal. She JUST was cleared to take a break from the recovery PT on Thursday. And on Friday it was the wisdom teeth.

We laughed a lot before the teeth came out. We called her an overachiever and kept the mood light reminding her that years from now she would be able to boast being the first, when her friends inevitably would need theirs done too. This surgery had a glimmer of “normal” attached to it – although distinctly unique in her age.

But, being unique isn’t always a place you want to be. Especially at 12. Sometimes you just want to blend in a little.

It’s less than ideal to have a weak knee with a persistent AVM. It’s no fun at all to grow AVMs – even tiny ones – in the palms of your hands. (One in EACH hand to be fair.) It doesn’t make for good conversation, when your experiences are operating rooms, and your excitement comes from which doctor hurts less when they put the needle in. Which 12-year-old would really know how to respond? It’s certainly not the place you want to be as the FIRST wisdom tooth survivor of all your friends, when none have seen their own swollen puffy cheeks, or have any idea the pain as the incisions begin to heal and the stitches work their way through.

And I knew the prcedure even surprised the surgeon. When I went to her as she woke up, the medication plan had changed. Initially she was to recover on Tylenol. I was handed a script for a narcotic pain reliever and instructed to be sure she used it. It’s never dull. Or easy.

It’s no solace to her that I understand THAT surgery. Because I had it AGES ago, and I don’t remember too much except pain. And, I won’t be in school with her tomorrow to give her Tylenol, or reassuring glances, or soft food.

Recovery, when she was little included furry stuffed animals, and lots of rest time. It included balloons, and all sorts of pomp and circumstance.

Recovery, now is more about the sporadic texts and occasional pop-overs while she tries to maintain her school work.

Recovery now includes the realization that it’s very definition of “returning toward a normal or healthy state,” could prove to be elusive, indefinitely.

We do a lot of talking. We all know how fortunate we are. We all understand how much worse all this could be. We have depth of knowledge of those around us who suffer. We think. We pray. We miss our friends.

Recovery, on this beautiful holiday weekend, involved trading walks in the fall air, for open windows. It involved being nearby all night, because I was allowed. Recovery means family time. And maybe that’s one of the things that keeps us sane.

Perhaps “recovery” has become a routine venture. And THAT in and of itself could lead to a whole lot of other conversations.

Tomorrow it’s back to business. The plan is to swim by Thursday. After all, there is a meet this weekend.

Our goals in this house far exceed recovery. That’s way too repetitive.

We like a challenge. We are BEATINGCOWDENS!

“An Accumulation…”

Published on October 8, 2015October 8, 2015 by beatingcowdens3 Comments

I once read a story where a special needs mom described her daughter’s seemingly “over the top” fear of needles to a phlebotomist who had no frame of reference, compassion, or desire to understand. The phlebotomist had written the child off as poorly behaved, and the mom as one with no control. This mom said plainly to the phlebotomist, “It’s not you. It’s not even the needle any more, at least I don’t think so. You are AN ACCUMULATION of botched blood draws and rolled IV attempts. You are an ACCUMULATION of her being stripped of her control, and of all the pain that has come from those needles.”

That story stuck with me in the deepest way. And I have told doctors, nurses, and phlebotomists alike, whose egos are sometimes easily bruised by an incredibly anxious 12-year-old, not to take it personally. That is if course unless they get it wrong and add to the problem…

Tomorrow morning Meghan will head to the oral surgeon for general anesthesia and surgery 15.

The surgery itself this time is not that unusual. The wisdom teeth are impacted and the bottom two will come out tomorrow. Years of orthodontics are complete, not to be damaged by over-anxious wisdom teeth making an unwelcome early appearance.

I say it’s not unusual. Except that she’s 12.

If you think about when you had your own out, my guess is you were somewhere between 17 and 21. And, at the time you had them done you knew at least a few people your age who already did it. And you were in turn “there” for your friends that followed.

Except once again she’s braving unchartered territory alone.

For those that have challenged her on calling this “surgery,” I will remind you that is probably how you referred to yours. At the oral SURGEON, under anesthesia.

There have been countless well-meaning adults, telling her about their wisdom teeth, and how it’s no big deal.

And while their intentions are good, I bet there aren’t going to be too many people absent from her junior high this year to get their wisdom teeth pulled.

As “normal” as things are, they just aren’t.

By the time her friends get theirs done they will not remember, and I’ll likely have to vouch for her story that hers came out at 12.

The oral surgeon’s office called to remind me she shouldn’t eat or drink after midnight. They shouldn’t worry. I stopped any use of NSAIDs, and fish oil, and unneccessary multivitamins a few days ago.

We’ve got this.

She just shouldn’t have to.

It’s a recurring theme. But, we will endure. Because we have no other option.

Defrosting the chicken for tomorrow’s soup.

We are BEATINGCOWDENS!

The War Ain’t Over Yet…

Published on October 1, 2015October 1, 2015 by beatingcowdens2 Comments

Tonight wasn’t one of our better nights. And, as we drove home, and sorted through a few things, I offered Meghan this outlet. I told her writing helps me sort out my thoughts and get refocused. Here is Meghan, as our GUEST BLOGGER….

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Tonight I couldn’t finish practice. Yesterday I hurt my knee, my kneecap clicked back out at practice and I got shocking pain through my leg. A lot. So I pulled the rest of practice and iced my knee when we got home. I went again to practice today and hurt my knee so much that I couldn’t continue. I went home in tears feeling like I just failed. I gave in tonight. I lost this battle, but I will win the war. Tomorrow I will not play gym, for I will save my strength for swimming.

So, I will go back to Wagner on Saturday, and I will finish practice and do it well. I love swimming, and I love the pool. When I swim I feel like I’m actually at peace. I won’t lose my favorite thing in the world. I will keep fighting, and Cowden’s Syndrome will not win the war. I WILL.

I cannot be normal, and I cannot play as much as I’d like to with the kids. I always have to watch and be careful about what I do to my body. Well, I am not going to let that stop me. I’m going to succeed and I’m going to live my life to the fullest.

Cowden’s Syndrome may win quite a few battles, but I will win this war. I will keep fighting and I will stay strong. I will get some injuries along the way, but I will recover.

Hey Cowden’s, did ya hear me? The war’s NOT over yet, and you will not be the victor. Take your small victories, for today was one of the days when I did give in, but it won’t be happening again any time soon.

Do What You Love

Published on September 29, 2015September 29, 2015 by beatingcowdens1 Comment

It was almost 8:40 last night as I drove down Grymes Hill with Meghan. She hadn’t been home since we left for school at 7:20 that morning. She was facing a shower, dinner, homework, and a later than normal bedtime. She had spent the afternoon registering for her after school drama program, and had spent the last two and a quarter hours in some combination of intense exercise- on land and in the water. She was exhausted and it was evident in her face. But, not it her voice or her mannerisms.

“I know I’ve got you running all over the place Mom, and I know it’s a lot of hours. But, I have to tell you that I LOVE it.”

I couldn’t help but smile in spite of myself. We all want for our children to do what they love. And here she was; registered for drama, swimming 4 days a week, pushing the herself at school, enjoying church youth group, and planning a fundraiser for February.

She feels rotten. A lot. But she pushes. And I have to believe that is how we have to live this syndrome – this life. Maybe I’m a good influence after all.

She plays in pain. Constantly.

She is always recovering from or anticipating something. But instead of waiting for the storm to pass…

She’s clearly dancing in the rain.

We have our spats. We’re supposed to. But, we balance each other too.

We keep each other motivated. We keep each other grounded. Her diagnosis still makes me physically ill. But, it does not, can not, and will not define her. I’m convinced.
Do what you love I tell her. Do what makes you happy. And she does.

And I do too. Watching her for hours, on the bench, in the basement by the pool makes me happy. Watching her on stage makes me happy. Watching her persevere makes me proud.

We will do this- together. We are BEATINGCOWDENS.

Summer List

Published on September 7, 2015 by beatingcowdens2 Comments

I have been walking around all day with that nagging feeling in my stomach.

I have packed my bag, and Meghan’s too.

I have filed, organized, and made lots of lists.

There is a new schedule on the wall – color coded and everything.

The calendar says it’s time, but my heart, and my stomach beg to differ.

Summer was to be about beaches, and barbeques. It was to be about road trips and freedom. It was designed for friends, and fun, and get-togethers.

Except that most of that never came to be.

There was that knee surgery in May, that derailed any hope of walking long distances for a while, and thrust us into 2x a week PT. Which, even though we LOVE Dr. Jill, can be daunting in the schedule. And, it eliminated most day trips that could easily be taken for granted, if you don’t have to factor in that a walk more than about 3/4 mile is out of the question.

And while that was going on Daddy was rebuilding the deck. Alone. For three months. Every spare minute of April, May and June. It looks so beautiful. Maybe next year we will get some people over to relax and enjoy the deck, and the grass. The new grass, artificial, durable, and a drastic improvement over the old side yard. Yes, maybe next year.

We got the pool open the first week in July. And July had drama “camp,” and I use the term VERY loosely. And July had swim practice. And July had doctors, some regular, like PT, others on the 6 month schedule. And some blood tests, and some ultrasounds, and a bone density test for mom. I think I stopped counting at 30 appointments.

But, thankfully August had Disney. And there are few other things that can bring me such joy as a vacation with my family to the “Happiest Place on Earth.”

And August had it’s own set of appointments, including hand surgery to remove a vascular lesion from her palm. And setting up the whole wisdom teeth thing for September.

So it’s easy for me to be sad. And down on things. Because I want a do-over. But, I guess that’s normal. Because most people probably do.

I sat down tonight to get my head clear. To “flip it,” and get my head and my heart in the right place for tomorrow. I sat down to acknowledge the many things I have to be grateful for, and the things that went WELL this summer.

So, in no particular order…

The new deck. No splinters. No maintenance. Pretty. And finished.
The new grass.
Walking barefoot in my backyard.
Road trip to West Virginia, that I took alone, on a very rainy June weekend to meet some Marines. Healing help.
My road trip to West Virginia
Listening to my girl sing. In pain. In joy. In the shower. In the living room. In the car. Anywhere.
Healing progress. From both recent surgeries. And the resilience to continue to endure.
Laughter. Mine. His. Hers. Friends of hers. Strong laughter.
Disney. I’d go back three times a year if I could.
Graduation party, bridal shower, and a wedding. Mom being 18 years cancer free. Meghan turned 12, and Felix had a birthday too! We celebrated Pop’s 96th birthday. Celebrations.
Board games.
Green tea – together.
Trips to Ralph’s.
Watching my all time favorite movie, “Dead Poet’s Society” with my girl.
Nutrition packed shakes, EVERY day. Even in Disney. Fueling my body.
Reading a book my friend in Australia wrote about Cowden’s – for all the world to see.
Antibiotics that heal recurrent infections.
Walking. 5 miles a day, most days. and at least 10,000 steps every day since July 8th. Goal met.
Last, and DEFINITELY not least, were my walks with Mom. My healing walks with Mom. There were so many mornings when she and I walked together, 2 miles, with 2 dogs. We talked this summer more consistently, and for longer, than we have in a long time. I think this was one of the best things that happened all summer. She is a strong lady. Lyme Disease took a stab at her this summer. Apparently for the second time. And she has told it where to go. So often she is a grounding force for me in this never-ending battle to remain BEATING COWDENS. I will miss those walks. They were not just for the FitBit, but so much for the heart and the mind.
My Mom. My first hero. My friend. We need an updated picture.

And that is just what my compulsive, reflective, organized self needed.

Because now, I feel a little better. It wasn’t what I had hoped. There was sadness, and worry. for my own girl, and for so many others. For adults I love, and for a former student fighting a formidable battle.

But, I woke up every day. And lots of days the sun shined. And fun doesn’t have to stop just because school starts.

So as I lay my head down tonight I will do my best to do it with gratitude. For new days. For new seasons. For a job with a kind boss, helpful colleagues, and wonderful children. For a job that begins new every year. For the knowledge that every day, every season, will hold blessings and challenges, for us and for everyone.

I wish you all a wonderful fall, but I’m not closing the pool just yet….

Anticipation…

Published on August 24, 2015 by beatingcowdensLeave a comment

Funny how things creep into the mind. Then there was this Heinz commercial from the 70s.

Anticipation – is making me wait…

Tomorrow we do it again. Surgery 13. Vascular malformation, left palm.

Hopefully it has kept a safe distance from the artery.

Hopefully it is smooth and easy.

But, we worry. And it’s normal. Just because you’re USED to something, doesn’t make it OK.

Anticipation…

We will rest, although I don’t expect much sleep.

“There’s nothing wrong with THAT girl…”

Published on August 9, 2015 by beatingcowdens1 Comment

To the Young Couple on the Bus this Morning,

You should know that I heard you. I heard what you said as you glared at my daughter. I saw you shake your heads in disgust and say, “There’s nothing wrong with that girl, I saw her walking at the hotel last night.” You seemed proud of yourselves, like you had “found us out.” Maybe that’s why you weren’t so quiet. Maybe you wanted the others to hear, and to look at us in disgust as well, while the bus took 4 extra minutes to load my daughter on the wheelchair ramp.

I thought about what you said on and off through the day, and that alone made me mad. The fact that I even gave you a second thought was so much more than you deserved.

Then we caught the same bus home, and I really struggled to hold my tongue as you went at it again.

But, on the way home, I was less interested in you, and much more concerned for my daughter. She wasn’t well, again. And in some ways we are used to it, but it’s never any easier to see. As magical as it is here, it doesn’t change our reality.

Our reality, the reality of daily struggle with an invisible illness, is with us all the time. And even though my daughter CAN walk, she is not physically capable of the walking required to navigate the parks. Maybe its the 6 knee surgeries. Maybe its the after effects of the thyroidectomy. Maybe its the low immune subclasses, or the severe GI issues. She tires easily. And today, because it’s day three, she is already worn out. And even with the help of a wheelchair, she needed us to cancel our dinner reservation and get her back to the hotel to rest.

So, yes. At the advice of her doctors, and the agreement of her parents, because she NEEDS a break from her life, and EVERY protection to help her feel well, she uses a wheelchair through most of the day. And every day before we leave the hotel room we say a prayer for all those who HAVE to be in a wheelchair all the time. We take a moment to pray for their strength and health.

You aren’t the only ones. There are plenty of others who look at my beautiful girl, and think that this is some type of ploy. Which would make us pretty sick people. Because if you really want to feel queasy, push your child around in a wheelchair. Go ahead. Try it for a week. We’d rather she walk. She’d rather walk. So sometimes we let her try. With advil, and about 3/4 mile round trip. There is ice for the knee, and a shoulder to rub. The body behaves like one 40 years older. But, she pushes. To keep her independence. To feel normal.

The next time you wait the extra 4 minutes for the bus to load, don’t judge. Don’t figure you know the who, or what or why, about the person in that wheelchair. Don’t pity them. Don’t feel badly for them. Just be respectful, and assume they fight a battle you know nothing about.