For Cowden’s Syndrome patients, there are surgeries. There are different kinds for different people. But, inevitably there are surgeries.
When most young people talk about being afraid of the dark, many parents dismiss their concerns. They put a night light on for a bit, and they tell them there is nothing to worry about. Because for typical children, “dark” is that brief time in their rooms before they fall asleep.
But, if you have had about a surgery a year from the time you were too young to fully comprehend the gravity of the tumor causing condition you live with… the “dark” also comes awaiting anesthesia on an operating table in a cold room full of strangers. The “dark” always comes after an uncomfortable IV placement and hours of waiting your turn, thirsty and hungry. The “dark” always comes before you wake up in inevitable pain.
The nightlight in my teen’s room came from scraps her dad collected at work. Really cool scraps. And since he’s an electrician, adding the LED was easy.
That light has been in place as long as I can remember. It provided a gentle glow when the nightmares from the PTSD triggered by one too many manually induced episodes of “dark” would provoke relentless nightmares.
It lit the room for the years my presence was necessary to get past the falling asleep part.
You know, that in between place between awake and asleep…
That time when all the thoughts you try to push away find their way in…
And then the dog took my place, the dog and the light.
But bad hips made it tougher for the dog to remain a soothing, breathing presence in the night.
So in January we got our older girl into a bed downstairs and we found a shelter dog at the Brooklyn ASPCA. He was abandoned. Tied to a tree in a park. He was about 6 months old and in dire need of love. (and structure, and training, but MOSTLY love)
April, our older girl welcomed him right away.
About a week into his stay in his new home, Jax curled up on my girl’s bed and fell asleep.
Turns out he is soothed by the breathing of another too.
This week after MONTHS of being home my girl told me it was time to take the nightlight down.
“I’m just not afraid of the dark anymore.”
People who haven’t lived our lives will say – ‘It’s about time’ But, she and I know it’s time, when it’s time.
So many things have happened these last few months during this COVID-19 crisis. Maybe the most remarkable is the family time we’ve shared. We have learned even more about each other, all three of us.
She asks tough questions, of herself and everyone she speaks with.
She holds herself to the same standard she expects of others, and truthfully those standards are so high she’s often disappointed. It’s a balancing act.
She is driven. Focused. Loyal. Compassionate.
She managed a 4.0 AGAIN.
I will pass Tinkerbell off to another beautiful girl, and hope the Pixie Dust blesses her dreams.
“I’m just not afraid of the dark anymore…”
My beautiful girl, with your heart and God’s grace you will change the world.
As for me, I’m not quite ready to part with my nightlight, as we remain…
The questions were simple enough. “What about basic supplies? What about the laptops? What about the crayons? What about the things multiple hands touch over a short period of time every day?”
The man at the end of the call asked the questions of the teacher’s union president. It was following a discussion of what we will need to do to safely re-open schools in what many hope will soon be a post COVID-19 world.
The call was 5 days ago.
I have asked myself “What about the crayons?” innumerable times since I heard this teacher ask. The union president was stumped, but to his credit, collected this teacher’s contact information to add him to future focus groups.
There is so much we just don’t know.
I have tried to stay present, not to stray too far from the moment. I have tried to remain in an attitude of gratitude for my ability to work from home, the health of my family, and our financial stability.
But, my mind strays from tragedies, milestones missed, and seasons not played, to an uncertain future. We receive conflicting messages daily, through multiple elected representatives, doctors, and ordinary citizens. Everyone feels adamantly one way or another about a variety of issues.
But, what about the crayons?
It’s a basic enough question, that may seem like no big deal if you haven’t spent the last 23 years in an elementary school. It’s the kind of question that will easily be brushed aside regardless of how many times it’s asked.
But, maybe it’s one of the most important questions.
Through the years of teaching I have seen a lot of changes, and I have not always embraced them willingly. Some, I would argue still, are pure nonsense. Others have made me a better educator. In reality, like so many other things in life, what I agree with is not wholly relevant.
When I started teaching we had desks. Students had desks. Teachers had desks. Everyone had their own supplies. Students largely worked alone. Slowly, there were times it was appropriate to do “group work” where we would move desks together for collaboration, only to later return them to their original separate space.
Through the years, desks became tables and teacher’s desks were eliminated. There were bins on tables for shared items. Books were kept on shelves, and folders kept in bins. Everything required a monitor to hand it out. The tables were 6 sided, making separating children a challenge, you know, for those activities that shouldn’t be done in groups. So we added “dividers” also stored, and distributed as needed.
Slowly, desks have made a comeback, as everything old is new again, and supplies are often kept in the desks for the older children, but many of the youngest still work from tables.
We are supposed to teach them to collaborate. We are supposed to teach them to work in groups. We are supposed to teach them to get along, in addition to, well, TEACHING them.
About 10 years ago I shifted from teaching in a classroom of my own students to teaching as a “cluster” teacher, in a position to provide preparation periods for the classroom teachers as per our contract. I serve as a math cluster, a position many see as odd, but one I love. My role in this position is to help all children love math.
I have evolved over the years from a hesitant, controlling teacher, to one who embraces productive student noise and activity. Although I see students from kindergarten through 4th grade, my room still has those six-sided tables. Most lessons are hands on, using everything from play-doh, to stamp pads, to puzzles, to counters, to fraction bars and many more. My children share pencils, 12 at a table. They also share scissors, and glue, and rulers, and hundreds charts, and teaching coins, and that is only some of what is in every table bin. As 5 classes a day, 25 classes a week, and roughly 600 students a week sit at my tables and handle my math tools, monitors count and keep order. Desks are washed often and hand sanitizer flows freely.
But, there is no part of me that thinks it’s enough.
The giggling joy of children battling number facts, playing dice games, building numbers with play-doh, and solving number puzzles together has become a sound that I truly enjoy. My room is noisy, active, and largely fun.
It’s a stark contrast to some other aspects of life.
I take seriously the task to encourage a passionate love of math. I am thrilled to be a safe space, where tests are minimal, informal assessment rules, groups are fluid and the majority of children get to feel successful.
Maybe I learned how important that excitement for education was after our Cowden’s Syndrome diagnosis in 2012. Something about surviving a sneaky cancer, and watching your own child lose a good deal of innocence on exam tables, and in operating rooms, makes you more in touch with the value of “productive, happy noise.”
My girl was in 3rd Grade when we were formally diagnosed, but in truth she has ALWAYS been dealing with health issues. I watched her elementary school experience. I know as an only child with two working parents, largely unavailable to meet others to play, social isolation came early. I know she had tons of alone time, and subsequently too much adult time.
I know the teachers that changed her life for the better, to whom I will be eternally grateful, and I know the ones who just changed her.
She never liked math. I could always get her to understand, but it made her nervous. It still does. She never “played” math. Like so much else, it was a task to master, not an experience to have.
Maybe because it was easier to read during the hours of waiting, in traffic, in offices, in hospitals, and during recovery. Or maybe because it wasn’t fun. I’ll never know.
She never really handled crayons much either. Or math tools. And she was allergic to the wheat in the play-doh….
So, I set out to make my math room a place that could maybe change the perception of one kid. Maybe I could help one kid believe they could be good at math, or that math was fun.
I have a system set up. There are 5 bins of every math tool you can imagine. When they need crayons there are three fresh boxes poured out into bins that match the color of their table baskets. The older kids usually have a focused lesson in different levels. The little guys often rotate through a few activities to keep them moving and keep things developmentally appropriate.
Which brings me back to the crayons.
As my colleague on that call pointed out, it was laptops, crayons, and everything in between.
It is my entire program. It is all things hands on and developmentally appropriate for our youngest learners.
No one knows.
I have had many sleepless nights since we began
Very few things leave a mom as unsettled as her child’s health.
But, a close second might be asking a primary teacher, “What about the crayons?“
I was staring at the screen looking at 14 other mothers. Women who have at least one child with the same PTEN mutation my girl and I have.
A quick scan of the “room” on this Zoom call showed me newly diagnosed, seasoned veterans, moms of teenagers, and moms of toddlers. There were some mother/child combinations, and some with “de novo” or spontaneous mutations. We lived mostly in the US, although one joined us from Australia. Even as I watched my screen and jumped in to the conversation where I could, my mind was racing.
I “know” at least a few dozen more PTEN moms, and yet, Facebook algorithms being what they are, the call notification didn’t circulate as widely as it could have.
A few of these moms “know” us from this blog. That was flattering and mind-blowing simultaneously.
It was like a “first date” with old friends-ones who I’m not likely to meet in person any time soon.
Listening to each one talk I wanted to spend hours with them. I wanted to hear their stories in intricate detail. I wanted to know about overlaps and differences.
Each story made me feel like I could fill out a giant Venn Diagram.
As moms I am sure some of us are alike, and some different. In some cases if we lived nearby we might be the best of friends, and in others mere acquaintances.
Yet I felt an instant bond with every single one, and as I am notoriously terrible with names I admit even writing a note or two next to some names to help me remember their story.
We all had a common desire to be heard, and to hear. We wanted to be heard by our children’s doctors, which with only 2 notable exceptions as locations seems to be a coast to coast failure. And we wanted to hear other stories. We wanted to feel less alone. We wanted to know what happened with other people’s children.
I think on this call my girl was the oldest at 16.5 years, but there were others who had been diagnosed longer, as she was already 8 when our diagnosis came in 2011.
I had plans to attend the PTEN Foundation Symposium in Boston in May. My plane tickets were refunded this week. I had hesitated canceling even though I knew for weeks in my heart it was not to be. I hesitated because I was just so excited to meet some more moms like me. Moms who have spent their child’s entire life being detective, advocate, voice, cheerleader, motivator, educator, and have earned their own type of medical degree from decoding research they once thought was impossible to understand.
I know there will be other gatherings, and I am grateful to the PTEN Foundation for that. But, the need to connect runs deep.
I wonder why I feel so compelled now to meet others. I have been doing this quite a few years with only a small handful of PTEN moms. And truth be told I’ve been advocating for this kid’s medical mysteries since 2003!
I just saw this shirt pop up in my newsfeed. I’m well aware of how deeply ads are targeted to us personally. And it definitely is true. I am by nature more introverted, especially in large groups, finding it easier to write than speak.
Except lately I miss people. Not all people. Don’t worry I haven’t totally lost it yet. But, the kind ones. I miss the kind ones.
Something about a pandemic can help you reevaluate the importance of connection.
My family of three has spent so much more time together than we have in a decade. It has been a blessing in this difficult time to reconnect.
I have spoken to a few more old friends too. Previously we were too busy to text, and certainly too busy to call.
I have learned how easy it is to Zoom, and FaceTime. I know now the value of face to face contact – even through a screen.
I have to ask myself if in a different time I wouldn’t have made an excuse not to get on that call.
In my heart I know the answer.
And I’m grateful for the forced lesson in the value of connection.
There are things you could do without ever experiencing. Clearly #COVID19 is one of them.
I live in NYC. I have lived here every one of my 46 years.
I was born and raised here. I graduated from public school, SUNY and then CUNY. I work in the elementary school I graduated from. I have lived in the same zip code pretty much my whole life.
I watched my local community rise up many years ago when my young cousin battled Leukemia. I remember that, even over 30 years later, whenever a neighbor I don’t know is in need.
I watched my local community, many aspects of which were decimated by the horrors of 9/11, rise up in indescribable ways.
I watched my community draw together again after Hurricane Sandy wiped out neighborhoods.
We worked together. We prayed together. We loved on each other. We gathered together. We shared what we had.
I live amongst compassion, bravery, dedication, resilience, tragedy, and grief.
I also live amongst some selfishness, stupidity and inflated senses of self importance.
The greatest city in the world gives you all that and then some.
Despite having a small social circle, I am a mother, a wife, a daughter, a granddaughter, a sister, a niece, a cousin and a friend.
I am a patient with a PTEN mutation called Cowden’s Syndrome.
I am a cancer survivor.
I have a teenager with 2 rare diseases, and a brain that runs 24/7.
We are immune compromised.
I am a NYC Public School Teacher.
My husband is an essential worker.
Daily the news reports are often silenced in my house. I know what’s going on around me. A few numbers across a screen give me what I already know. Hope of blossoming spring has been muted by tales that nightmares are made of.
I spend the days trying to remotely engage young minds in math games. It is, if nothing else, a welcome distraction.
Suddenly, this community that does so much better when we can gather together is isolated.
Our friends are sick and dying quickly. To much of the country and the world they are numbers. To us they are humans with names and families. We can not visit. We can not comfort. We can not gather. We are leaving our loved ones at the emergency room door, praying we will see them again.
We, alongside the whole world, are fighting a virus that seems to have a strangle hold on my home town.
People like to make themselves feel better, but the truth is this virus does not discriminate. We can barely even find it, let alone attack it.
We are chasing it. It clearly has the upper hand.
We have been told to #flattenthecurve but, I fear the sheer numbers of us make this so much harder.
My husband comes from work removes all layers, scrubs, showers, washes all outer garments. He gave up public transportation to reduce his “touch points.”
We are grateful for the home we have. We are grateful for each other, for the internet, for Zoom and FaceTime, and virtual church. We are grateful for washing machines and space, and luxuries never to be taken for granted again.
We are grateful for computers that allow for everything from Advanced Biology to voice lessons and test prep.
We leave for 2 walks a day at off peak hours.
The stores I used to walk in and out of because I could, are saved for when lists accumulate and there is need.
We order food a few times a week, a calculated risk carefully played out because the restaurants that have openly supported our fundraisers through the years, deserve our support now as well.
The schedule has slowed from its chaotic pace. Swim season just isn’t. There is no college search right now. Doctors are cancelling, and rescheduling. Routine check ups are on hold. And honestly I don’t mind. Even this chronically painful foot is waiting its turn while really important things happen at the local hospitals.
We take this call to social isolation really seriously here.
Selfishly, I might even enjoy a little of this forced family time. A year from now my girl will likely have her college chosen and be starting her transition out of our nest.
Having Cowden’s Syndrome has done a lot of work on my perspective through the years. I’ve learned that you can’t keep waiting for it to be over. That’s true of everything in life.
A dear friend has told me often, “You can have it all, just not all at the same time.”
You have to live each day, from beautiful to unspeakable. It is the only way to preserve feelings of compassion, empathy and focus on the greater good. You must laugh and cry, and scream and yell, and feel all the feelings.
I have scanned 3 and a half years of letters Pop wrote to Grandma in the years he was deployed during WWII. Those years preceded a marriage that lasted over 70 years. I think of them all the time, but even extra these days. I think about how hard it would have been to socially distance from them, but also about the lessons they could have taught all of us in patience, resilience and sacrifice for the greater good.
I’ll use some of the next days to read every one of those letters before uploading them to create a hard copy to be shared in my family for generations.
There is a lot to be learned from the “Greatest Generation.”
Sometimes I get angry at flippant or arrogant folks I see, in person or on the news. The people who think they are too good, or exempt from this global pandemic. The people who don’t think they have to do their part.
Then, I decide to focus on the overwhelming number of people who are doing whatever they can to make this better. All those essential workers we learned about in the first grade unit on “Community Helpers” are the ones I focus on with gratitude.
I am not better than this virus. I am just as susceptible as the good people across the globe who are struggling with these infections.
I isolate not out of fear, but out of respect.
I isolate out of respect for those who can’t.
I isolate out of respect for our first responders and essential workers.
I isolate out of respect for those who are living with this virus.
I isolate because maybe one less person will get infected because I did.
I miss the way our city has come together in all other times of tragedy.
I miss hugs, and offering comfort and being comforted.
I will message the people I miss so much, and check in on them.
And, instead of complaining the time away I will spend more of it in prayer for those who need very much not to feel alone, reaching out through the technology I’m blessed to have, with gratitude that if I am forced to isolate I have a comfortable home and a few of my best friends to be with.
World Rare Disease Day is February 28th. People all over the world will work to raise funds and awareness for over 7,000 Rare Diseases worldwide. In our house things are buzzing, as we prepare to teach the world a bit more about Cowden’s Syndrome.
There will be so much time to write. Soon. Right now we are preparing for Rare Disease Day 2017 and “Jeans for Rare Genes 3.” All the preparing brought me back to her video from last year. And then I looked at the year before, and the one before that. And I was struck by how much she has grown, not only in her technological ability, but also as an advocate, and a voice, and a human.
There will be no video this year. It was time for a change of pace. But, I thought it appropriate to post these here, now. She keeps me grounded…
Like all things your perception changes over time. When I was much younger if someone asked me for the most hurtful thing someone could say to me – it would have been something you’d be much more likely to guess.
But, years have passed and so much has changed.
Now, hands down, this is close to the top of the list.
I am reminded today of my senior year in high school. Madame Eicoff taught accelerated French. At the time it seemed like a great idea, and the irony that I took seven years of French and grew up to marry a Spanish man was never lost on me. One of the many ironies of life. But in Mme. Eicoff’s class we read “Le Petit Prince” by Antione de Saint-Exupery, and reading and understanding, and feeling that book in French… well, close to 30 years later the emotions are still fresh in my mind. But, I digress…
I don’t want to LOOK sick. I guess in some ways it could be a compliment.
Except it’s not.
Everyone who says it, or thinks it, or shouts it, or whispers it, does it with judgment.
And I guess my question is – What does SICK look like?
In this day and age where tolerance is expected, I feel like we are lagging behind in acceptance of rare disease and chronic illness.
What qualifies as sick?
Is it constant trips to the doctor? Tests? Scans? Referrals to more specialists? Surgery after surgery? Recovery?
Is it having doctors “Google” your disease in front of you, only to have them authoritatively verbally plagiarize the first page of the search when you have analyzed every relevant article on the first ten?
Is it time after time being made to feel you are not credible, or “less than” because no one can make it better?
Is it begging and pleading for pain relief only to be accused of being an addict, when you don’t want a pill at all?
Is it constantly plotting and planning any outing so as to utilize the fewest amount of steps to minimize the often bone crushing pain and fatigue that follows tasks as simple as grocery shopping?
I will agree there is a fine line between simple reality, and self-pity. I dance across it sometimes.
And then I play the music louder and dance right back.
This is my reality. Self-pity has no real purpose. People typically don’t want to hear about it.
But, just because it makes you uncomfortable doesn’t make it any less true.
I am not perfect. I judge. I judge for the wrong reasons sometimes. I judge people who I know nothing about sometimes. I am a work in progress. (As a dear friend often said, “I live in an all glass house.” Nothing about this is intended to throw stones.)
I am learning every day that saying “everyone has something” and really BELIEVING it are different.
I am learning that mine is no more, and theirs is no less and that is perfectly ok.
I am learning that human suffering is a universal, and “sick” carries a stigma that should be eliminated.
Because, if you are “sick” and you “look” it, you are likely “seeking pity.” If you don’t “look” it, but you have an “acceptable” (read well known) illness, you are “brave.”
Mental illness is not visible, yet depression and anxiety plague so many in astronomical numbers. Still we are embarrassed to speak of it, and it is surrounded by shame.
Chronic pain is not visible, not even behind the gritted teeth of the (insert so many people you know here) that you see every day. Living your life with pain that never leaves in and of itself can drive you mad. Think about the last headache you had. The one where you had to close the doors and shut the lights. Now think about it forever…
Real illness is often REALLY invisible.
This is neither a contest or a competition.
This is real life.
We are all real people.
And maybe it’s that simple. Maybe we need to go back to the simplistic view of a young child.Rare Disease Day is February 29th.
I am certain if you yourself are not suffering, you know someone who is.
They may look just like everyone else in the room.
I’ve set goals for self-correcting my unintended judgment of others.
I’ve found an excellent starting point at contemplating that every one of us is deeper than what can ever be seen with the eyes.
There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world1, each supported by family, friends and a team of carers that make up the rare disease community.
Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country.
Rare diseases currently affect 3.5% – 5.9% of the worldwide population.
72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
70% of those genetic rare diseases start in childhood.
A disease defined as rare in Europe when it affects fewer than 1 in 2,000 people. (www.rarediseaseday.org)
It was three MRIs in two days that week in November. That’s too many, in case you were wondering.
One was an extension of an August MRI, which had been a knee follow up. If you’ve been following – you know that long story. If you’re new, the AVM (Arteriovenous Malformation) she was likely born with in her right knee, has cost her 8 trips to the OR so far. It requires frequent attention.
By frequent I mean we see the orthopedist more often than we see most family. And this time the whole muscle band up her thigh had been acting odd. So we reached out to the orthopedist who asked for an MRI of the right thigh before we saw him at 1 PM that Tuesday.
By “odd” I actually mean really painful. Pretty much all the time. Painful enough that walking long distances or kicking swim practice got hard to maintain. But there is so much that hurts it’s hard to sort out where something stops and other things start. The hip had been “out” more than in, and even the chiropractor could not sort out why. The knee pain was persistent enough to leave her wondering if something was wrong again. The shooting pain, tingling and occasional numbness left her wondering if a nerve was somehow damaged.
Turns out, in typical form, she was right pretty much all around. This kid has an uncanny awareness of her body.
The doctor’s student came in first not far past 1PM. The MRI results were up, and he mentioned the AVM. We said, “In her knee?” When he said no, and mentioned one higher up in her leg, I pulled the plug on his practicing and sent for her actual doctor. Turns out the thigh MRI showed a vascular malformation in the back of her right thigh. It was somewhere in between the muscle and the bone, and adjacent to the sciatic nerve. When the images changed you could actually see the proximity to the nerve.
Hip issues – check
Knee pain- check
Shooting (nerve) pain-check
So he asked for an MRI with contrast of the pelvis. “Sooner rather than later.”
But then he had to address the issue that had been of greatest concern walking in the door.
The right shoulder had been presenting an escalating problem all during the fall swim season. She is a powerhouse my kid. She pushes through because she knows nothing else. The awareness that the Hypermobile Ehlers Danlos diagnosis added on in July could at least explain the frequent partial dislocations was little comfort to the body that was living with them. A thorough examination of a shoulder with extremely limited range of motion left us with orders for an MRI arthogram of the right shoulder. It was time to rule out a rotator cuff tear. We left with both MRI orders, and scripts for muscle relaxant and pain meds. We were told to try to get it done by Thursday. Yep 48 hours.
Thankfully Meghan’s insurance, which is the same as my husbands, (insurance coverage and coordination of benefits could take another post, so just trust me) does not require prior authorization for MRI testing.
So I got on the phone with scheduling and secured an appointment at the same facility we had been at at 11 AM for 3:30 PM. That ended up being the pelvic MRI with contrast, something we avoid until we are confident something is there. IV in place, back in the tube for another 45 minutes.
We were able to schedule the arthogram for 8AM the next morning in Brooklyn. But, not before learning that an arthogram was a pretty awful test. As I had tried to barter for a time that would not take her out of school three days in a row, I was told that the doctor had to be on site. I was asking for a quick schedule and I had to take what was available. I was wondering why a doctor had to be on site, but my girl found the answers first.
And as we contemplated the test we sat in two hours of traffic to make the 32 mile trip home.
The next morning we were met by a well meaning tech in a Brooklyn office who thought my girl was going to have the catheter placed without me. You can say all the rational things you want about her being almost an adult. But PTSD is very real. No matter how smart and articulate she is. It is flat out real. And that was about as huge a trigger as there is. So I got a vest, signed consent for whatever I was about to be exposed to and held her hand while she screamed in pain. The catheter was placed. The contrast was injected, and we were back to another 45 minuted in the tube.
The appointment at 1 the next day was overwhelming to say the least. The pain, the anxiety and the exhaustion were palpable. The news that there was no rotator cuff tear was met with simultaneous relief and exasperation. And if you don’t quite understand that it is probably because you have not lived with daily pain so intense you would give just about anything to hear that it was fixable.
Our orthopedist is nothing short of amazing, and he was able to explain to her that it was likely that repetitive partial subluxations caused muscle spasms that left the shoulder sitting just out of place enough that it was incredibly painful. And because the muscles were in almost a constant spasm she couldn’t get it back “in.” He explained the strength of her back and how some muscles are overpowering others. He broke down the directions for PT. He pulled her from the water for 7 days. He started a muscle relaxant 3 times a day.
Then, he had to explain to her that we should head back to Lennox Hill Hospital to see the interventional radiologist who dealt with her prior AVM. It had been three years since we had seen him, in hopes we were done for good. The placement of this “small” AVM (and think relative here, does a splinter hurt? Yep. So a grape hanging out somewhere in between the bone, muscle and nerve probably would too.) was difficult from an ortho standpoint. He felt that embolization, closing off the blood supply to the malformation, would give a quicker recovery than trying to dig it out.
We had an appointment on December 2nd at Lennox Hill. Just enough time to let the muscle relaxants start to kick in, PT to begin, and the shoulder to start moving slowly and painfully.
The doctor looked at the scans, did his own ultrasound and told us to schedule the procedure. We left with a date of Tuesday, December 17th for an outpatient procedure.
The date was carefully chosen by my girl. The 17th meant she’d miss only 4 days of school, and for a junior with a rigorous schedule and a 4.0 that mattered.
Also, the 17th meant she could go to Lancaster, PA the weekend prior to compete in a qualifying swim meet she had worked for years to make. She had been looking at this meet since she began swimming years prior. When she made her first, second, and third cuts over the months leading up to it, she was ecstatic. Now, she was facing this meet with a different set of eyes. The training interruptions caused by her shoulder meant she was unlikely to attain any best times. However her gentle giant of a coach reassured her she should go for the experience.
And it certainly was an experience! We left for home Sunday the 15th with the coach’s approval of three good swims. She knew it was the last time she’d be in the water for a bit.
We left home Tuesday the 17th for at 8 for a 10 AM arrival. This was surgery 19. We knew the routine. She had had nothing to eat or drink since 9 the night before. The wait was long. It was after 2 when we were waiting to leave her in the OR. And as we were leaving the team made a last minute change that they would do the procedure on her stomach. That meant a more aggressive anesthesia and an overnight stay which we were not prepared for.
We were placed in luxury accommodations, better than most hotels I’ve stayed in, because pediatrics was overbooked. We ended up in the executive suite. With nothing we needed. Felix headed home on the bus to gather supplies. He then drove back to the city and met me at the door to the hospital before heading home for the night.
I was glad we stayed. The pain needed hospital level management. The pain medication allowed for some brief silly time. She was discharged around noon the next day.
As I went to gather the car from the lot I was prepared for the hefty overnight fee, but not for the giant scrapes along my right rear panel. Clearly my car had been hit, hard. The bumper clip was broken. I had just enough time to file a claim with the garage before she let me know the transporter had her in the main lobby.
I settled her into the car in terror because she could not get a seatbelt on. I prayed so hard during that white knuckle drive down the FDR and through the tunnel. We arrived safely home 45 minutes later where a neighbor saw us struggling and helped her up the stairs into the house.
As I write, it is the afternoon of 12/22. If you’ve read this far you know it’s been a long month. But the longest days came after we arrived home.
This kid is busy. All the time. She is at school. She is at swim. She is at lessons. She is at the doctor. She is at PT. She is NOT used to being home.
Because I think most of us can relate that when you are still there is time to think. And thinking is hard. When you are still there is time to feel. And often feeling is hard.
My girl is used to being just on the outside in most social situations. I do not know why. I can theorize for days, but it doesn’t matter really. It just is. So when you are on the edge, you get your interactions with people when you are there. When you are not there you get the often difficult to process feeling that you are not missed or your absence isn’t noteworthy.
There were some cards, and some well intentioned messages from well meaning family and friends. They lit up her whole being.
If I’ve learned anything from watching her recover and rehab time and time again, it’s this. When you’re not sure what to do, show up.
I don’t mean in person necessarily. Although those visits can bring brief humor and relaxation. The irony of this technologically connected world is that we are more distant than ever, when it is so easy to show up.
When in doubt, send a text. There is no need for gifts or grand gestures. Offer a face time call. Let someone know you care, especially in the first 4 days when then pain is often the worst. It’s ok to reach out because these phones are all on mute. And you won’t bother someone sleeping, you will only make them smile when they wake.
Whether it’s one surgery or 31, the chronically ill patient appreciates it.
There are so many super-convenient ways to show up.
So many that we are practicing showing up more for others. Because the world is round. And you may not ever repay the kindness sent to you, but showing up for someone else can change everything.
You know that person in your life. The one who always has a dramatic tale of woe? The one who you tire of hearing from because all they do is talk about their health? Because honestly all that doctor talk is quite depressing. And I mean, you hate going to the doctor. You just went last week and they made you wait 30 minutes past your appointment. But, you gave them a piece of your mind, and you’re just not going back. You are way too busy anyway. You have other things to do, and a LIFE. So you’ll get to it when you get to it.
So, it might be a little hard for you to process that your friend doesn’t have the ability to make the same choices. And that one doctor visit, with the 30 minute delay, they do that several times a month. A 30 minute wait is a rarity. Typical time round trip, including traffic and wait – often 5 hours.
And over time you might have less and less to talk about with them. Because, they missed the party, or cancelled on dinner. They are so dramatic. You’ve had that wrong with you. Sometimes you have to get up and keep moving. They spend too much time being sad. What “trauma” could they possibly know?
While the Zebra is the Symbol for Ehler’s Danlos Syndrome- a group of inherited connective tissue disorders- it also speaks symbolically and metaphorically to the Rare Disease Patients we encounter daily. In our house it is PTEN Hamartoma Tumor Syndrome, or Cowden’s Syndrome, and Hypermobile Ehlers-Danlos Syndrome, for now. With over 7,000 Rare Diseases, it is not “rare” to have one. It is rare for them to be properly diagnosed, managed, and understood.
From National Geographic (BLUE PRINT IS CUT FROM THE ARTICLE)
No animal has a more distinctive coat than the zebra. Each animal’s stripes are as unique as fingerprints—no two are exactly alike—although each of the three species has its own general pattern.
No two are exactly alike…
Why do zebras have stripes at all? Scientists aren’t sure, but many theories center on their utility as some form of camouflage. The patterns may make it difficult for predators to identify a single animal from a running herd and distort distance at dawn and dusk. Or they may dissuade insects that recognize only large areas of single-colored fur or act as a kind of natural sunscreen. Because of their uniqueness, stripes may also help zebras recognize one another.
Stripes may help them recognize each other….
Population and Herd Behavior
Zebras are social animals that spend time in herds. They graze together, primarily on grass, and even groom one another.
Plains zebras are the most common species. They live in small family groups consisting of a male (stallion), several females, and their young. These units may combine with others to form awe-inspiring herds thousands of head strong, but family members will remain close within the herd.
They can combine to form a herd, or a small group called a “dazzle.” Seems fitting though…
I used to be social. I mean not overly social. I never traveled in large groups, but I used to dine out. I used to see friends. At least sometimes.
I learned of the old concept taught in medical school many years ago when we were starting to live this overwhelming life full time. It goes “When you hear hoofbeats, think horses, not zebras.” The professionals we look to have been trained to explain us away.
Our medical system is so deeply broken, that our best and brightest are in debt they can barely see past, and in shackles to the facilities they must work for, who are often managed on bottom lines and drug companies pockets as they overbook them and take away the time to look at the whole patient. These doctors are often cognitively capable of doping their job. They are just not allowed.
Some theories on the progression of that quote can be found clicking this link.
And we are trying to get treated by many doctors who have been trained, for whatever the reason, to categorically deny the existence of zebras!
It’s easier to diagnose and treat a horse I suppose. It is easier to open the text book, or the app and find the segment on their current malady, remedy it, and send them on their way.
I rarely meet a zebra who doesn’t WISH they could be a horse. We don’t want to be hard to diagnose and treat. But, we are.
I am currently in my 11th month treating a foot injury.
I fell at work and it was handled to the letter of the law there.
My insurance company denied the MRI I needed for my pain. I waited and walked on it for 2 months. When I could stand the pain no longer I received a diagnosis of a partial lisfranc tear, a zebra type of foot injury if you will. I was put in a boot, taken out of work and rested. Then I was taken out of the boot, not because there was proof of healing, but because I’d been in it too long.
A second opinion told me to be patient.
My local podiatrist running point on the case has been wonderful.
I have seen him every other week since March.
It hurts. Still.
I tried Physical Therapy and was sent away after 5 visits because he felt something else was wrong.
I tried ignoring the pain and walking through it. It got so much worse.
Another visit back to the second orthopedist left me feeling like a fool as he told me it was all good.
An MRI 2 days later showed stress changes in the cuboid bone, another “zebra” foot injury.
Unfortunately, those results came my way after 6 days in Orlando.
The boot was on again. This time with a scooter.
Another opinion and another MRI in September progressed the fracture to “non-discplaced” cuboid fracture and sentences me to another 10 weeks in the boot.
My original podiatrist, a stand up guy, suggested Hospital for Special Surgery. He could not get another MRI approved. My insurance had tired of me trying to get better. He thought HSS had a better shot.
In the mean time I had to come out of the boot. Not because the pain was better, but because there is only so long you can stay in before you have other risks.
Countless hours trying to schedule, I ended up with an appointment 10/31. His diagnosis was made without ever having me take a step. “You have too much pain in too many places.” Go see pain management. My husband strong armed him into ordering another MRI, which he did. Except for reasons I’ll never know he ordered only the forefoot…
The results of that MRI showed swelling, chronic fracture of the sesamoid, and a neuroma(that one is fairly common) among other things. He backpedaled a great deal when he called with those results.
My foot is in no shape to return to teaching – yet.
I went to neurology locally. Prior to me getting my sneakers off he diagnosed me with a pain syndrome, because “it has to be.” I did a nerve function test, was told to take a “tri-phase bone scan” and seek pain management. Again, no exam.
So, I scheduled the bone scan and started looking at pain management. Except no one at Hospital for Special Surgery will treat me, even though their doctor was also sending me. And the one specialist I was referred to locally does not take my insurance. I am awaiting an answer for another suggestion. My second call to the local office was at 9 this morning.
I have a ‘hail Mary’ pass going to a PT tonight who I PRAY will think he can help.
It sounds luxurious to be a zebra, right? Spa treatments all day. HA! Because what else would you do when you’re not at work?
It is easier to think someone is being lazy. It is easier to think they don’t care, or they aren’t trying. It is easier to find the green grass in someone else’s yard.
It is easy to judge. To say someone is “taking advantage.” It is so much easier than hearing the truth. Often the truth is hard. And just not as interesting.
I can assure you I have been schooled once again in the value of the lesson “Everyone has something.”
When you are rare, you are left on your own. A lot. Doctors will not, or can not, or are unable to troubleshoot an abnormal/multidisciplinary diagnosis.
I will wait. I will continue to seek answers. I will pray that all the bones in my foot stay in one piece. Because this, this was supposed to be the “normal” injury in the house. It was “just a fall.”
But, apparently as I’m learning, when you’re a zebra, you are a zebra through and through.
Thankful for my “dazzle…” You know who you are.
And some days I feel like its even a little more unique…
I catch the judgments when I mention PTSD to even those closest to us.
I have the utmost respect for our military, and our servicemen and women. They are the front lines, defending us and keeping us safe. They experience horrors I could not imagine, and I am daily grateful for them. The PTSD many suffer is real and no one would ever question it.
But, just as l know that their’s is real, I am that sure it is real in my house too.
Post Traumatic Stress Disorder does not stipulate the trauma.
Some days I try to ignore it. I try to hide it. I try to work around it. I try to pretend it’s not there. I try to lean into the pressures of well-meaning friends and acquaintances alike that we should act “normal” so as not to marginalize ourselves. I hear the logical statements about fitting in. I hear them.
We talk about “everyone has something.” We are acutely aware that we are not the only ones that suffer. We are aware of our blessings. We share those blessings with others when we can. We listen compassionately. We are believers in the notion that, “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.”
We are aware that we can be perceived as aloof, or detached, or disinterested. We are also aware that largely by circumstances and partly by our own design, we are alone. We haven’t really ever spoken to you about why… We try to listen compassionately. We try to be the people you need. We try to be lighthearted and positive when we feel like we are being crushed.
When the diagnosis of PTSD was first given to me as part of an analysis of my beautiful daughter’s response to the constant traumas that had shaped her life, I was physically ill. And then I was really sad.
And through the years I have tried to wish it away. I have tried to convince and cajole and distract. I have tried to rationalize. I have tried to blame myself. I have tried to be angry. I have tried to pray. I have tried to walk it off. I have tried to medicate it.
I have brought her to quality therapy. I have introduced medication. We have tried strategies. We have tried simple grit. We have never quit. And there is progress. But it is not easy.
I’ve been home a few weeks now with a foot that won’t heal. I am trying to put into play some things that have been on the back burner for too long. I am rediscovering my faith, and leaning back into the peace that has anchored my soul for so long. I am learning new things, like the operating system on a new computer. I am trying to find value in the waiting to heal.
I have also had some time to watch some old home videos, transferred from the portable video camera that was state of the art when our only child was born in 2003.
I look at some of those old videos and I laugh and smile. And I hear the purity and innocence of a life untouched by physical and emotional pain, and the cruelty of the loneliness that often surrounds both. And I laugh in spite of myself while the tears stream down my face.
We are strong. We are determined. We are compassionate. We are intense. We expect a lot from those around us, because we expect a lot from ourselves. We are often isolated, marginalized, and left to live on the edge of all things social.
PTSD, the elephant in every room.
You see the diagnosis of Cowden’s Syndrome was not the start of it. The first medical intervention was before the age of 6 months…
The years of hospitalizations, immune deficiency, chronic illness, food allergies, constant GI upset, speech, OT and PT services, led right into one surgery after another, with scans, doctors visits, and a few emergency room trips sprinkled in. There were arrogant doctors and medical staff, ignoring that we were literally walking through fire trying to survive. There were teams that would not communicate, and problems we had to try to solve on our own. There were well meaning people in our lives asking if she was “better” because they could handle nothing other than a positive in the midst of this crazy, wild storm we were living in.
The diagnosis at the age of eight formalized the fact that we were definitely different. It gave an answer while raising more questions and increasing the isolation, as parents scheduled play dates with children who became friends while we rode the FDR drive for hours after a day of work and school. They went to the mall, or to the movies while we headed to PT to bring that knee back from surgery 4,5,6,7,8…. It was inevitable that the divide would grow.
I told her she could do anything. And I meant it. I still mean it.
She is academically rock solid. She is an athlete. She is a good friend to those who let her be. She is thirsty for knowledge. She is insatiable in her desire to make the world better.
She’s also angry. And its hard to see it. It’s hard to feel it, and to watch it. But, it’s real. And it’s valid. As much as we were able to do for her, the basic joys of childhood were taken from her. From colic, to hospitals, to bullying so severe it almost broke her, to being just outside the edge of every circle or group… A week in Disney every year helps, but even the Mouse doesn’t have a bandaid big enough.
We stay busy. It is the best way. But sometimes it breaks down. This has been an extra tough week. There isn’t one reason why. It just is sometimes.
As I sat with her the other night and the memories of the most traumatic surgery turned my strong young lady back into a terrified 10 year old, I was reminded. PTSD is very real.
It is real when the medical world is overwhelming you.
It is real when the pain is chronic.
It is real when the thought of getting out of bed is just too much.
It is real when you need the dog close by to even close your eyes.
It is real.
It is also real when you’re the youngest NYS Woman of Achievement in 2016 at the age of 12, or being honored with a Humanitarian Award at 15.
It is real when you’re holding a 3.9 GPA.
It’s real when you are achieving best times at Junior Olympics.
It’s real when you’re laughing with your high school swim team.
It is real when you’re in costume on the stage.
It’s just flat out real. And most of the time you have no idea what it looks like. The costume is better than Broadway. The mask is strong, crafted through years of survival instinct.
It never goes away, and yet it takes over without notice at the most inconvenient times.
PTSD is not an indicator of weakness, but rather of strength. For living with it means you could have given up, but you are pressing on instead.
I’ve passed this advice to parents through the years who are new to our diagnosis.
“It is a lot to handle.”
It is hard to be kind to those who are different. It is hard to be with people who are sometimes just “a lot.” It is hard to care.
But the reality really is you just don’t know. You don’t know the struggles facing anyone you pass by on the street. You have no idea.
It’s neither a contest, nor a competition.
We are not perfect. It is harder when the hurt is in its most raw periods.
But, we have goals. And perhaps they go back to the “Golden Rule” of my youth. “Do unto others as you’d have them do unto you.”
That means you keep paying it forward, without expecting it to be repaid to you.
If we all, ourselves included, can remember that everyone has real struggles, and we can all focus on kindness, I’m pretty sure we can start real change.
One smile, one inclusive invitation, one held door, one kind gesture at a time.
“Be kind always, because everyone you meet is fighting a battle you know nothing about.”
I brought my husband. Well, technically he brought me. And he lugged the giant contraption down the stairs and into the back seat of our “big enough for most things, but not this thing” Sonata.
The screen on his iPhone had cracked and he needed to go to Apple. I needed an outing worse than a puppy who has been crated too long.
He dropped me off at the door. He rode the scooter through the parking lot to meet me. Apparently, like so many other things, its a LOT more fun when you don’t need it.
I laughed in spite of myself at the sight of it. I was also glad our teenager had decided to stay home. The sight of it all would have likely been just too much.
People stare right at you, while simultaneously judging you as you drive this thing. The local mall lacks the tolerance of Disney World. In fairness, from face on, it looks like you’re using wheels for fun. It’s not until I have passed, if they bother to look, that they would see the giant walking boot resting on the knee pad.
Today is 8 weeks and 1 day since I’ve been “booted” again. 57 days.
I have had more surgeries in my life than I can count. Not a single one of them kept me down for 8 weeks. This foot has been messing with my life for over 8 months.
Double Mastectomy – back at work in 5 weeks.
Hysterectomy – back in 2 weeks.
I once had arthroscopic knee surgery over a long weekend, and was back on the 4th floor in my classroom the following Monday.
Vascular, over the February break…
Biopsies, a day tops…
We always say recovery pain is the best kind, because you know it’s going away.
And yet the answer to “Does your foot feel better?” still remains “Not really.”
My kind and compassionate local podiatrist, in a combination of frustration at the injury that won’t heal and my insurance company making it harder for him to treat me, has advised a visit to Hospital for Special Surgery. I’m sitting. Foot up, phone in hand, waiting to try to schedule.
I rode that knee scooter all over the mall. I rode it into the grocery store too. Quite simply, I’m tired of being locked in my house. It is truly a ridiculous and ingenious contraption.
If you asked me 2 years ago if I would ever… the answer would have been “NO WAY!”
Except if I keep learning anything through these years of life with a rare disease, and also just life, it seems to be” never say never…”
I had a boatload of things I wasn’t going to do as a parent. I’m pretty sure the first one was undone about three hours in… right after the anesthesia from that c section wore off…
Wasn’t going to… feed certain things, watch certain things, give certain things, etc. etc. And then you find yourself learning that all the plans in the world are suddenly invalid as you just try not to damage the tiny human.
A great deal of my pride was left behind in the OR where she was delivered.
I lost a bunch more of it through a slew of breast biopsies prior to the double mastectomy in 2012.
The uterine biopsies, the hysterectomy, the “cancer screening” human exams took a bunch more.
And there are few things quite as humbling as a breast MRI of your silicone implants.
I was never “in fashion” but I used to take great care in what I wore. Things were dry cleaned. Stockings and heels were worn daily.
Then there was back pain that seemed only better in sneakers. Coupled with a significant weight loss my wardrobe evolved into jeans, t shirts and sneakers. May be a dig at my early judgment of “too casual” teachers…
Life, at it again…
If we are open, and able to be introspective, we are changing and growing all the time.
I am in a painstakingly slow process of relinquishing control.
Control is really largely an illusion anyway.
Faith, trust, hope, and the ability to embrace what the future has in store, these are my current goals.
I’m a work in progress.
So if you see me and my knee scooter, be kind. You may even see me up and down the block. These are, after all, desperate times…
We’re done being caged up. I need some fall air. I am ready to get well. Since my foot isn’t cooperating, I’ll start with my mind.