So How Do You Do It?

Recently I blogged about what it's like to have Ehlers-Danlos Syndrome and the secondary conditions (dysautonomia and Gastroparesis) it's led to. It's not always easy.

Sometimes it's downright awful. 

I'm an honest person by nature. And though I don't often parade around with these raw emotions displayed across my face, I fully admit there are days I hide, days I stay in bed, days I cry in the shower, too weak even to stand, too discouraged even to reach out. There are days I wonder why I keep going, days I can't face the fact that this is what the rest. of. my. life will be like. 

But such days are the minority. They're rare. Most of the time, you'll see me smiling, and that's no lie. It's not an act. I'm not pretending or forcing the pain aside. Most of the time, I really am joyful. My life is full, despite these health issues. I am a wife. 

I am a mother. 

I am a teacher. 

I am a friend. 

Daughter, sister, volunteer--my roles are many. People ask me often, "How do you do it?"

To answer, I have to tell a story. 

Once there were three young men. They were faithful men living in exile in a foreign land. The king of this land enacted a law that everyone had to bow down and worship a statue of the king. These three  young men remained faithful to their God and refused to worship the king of that land. The king liked these guys, and that didn't sit well with some powerful people in the kingdom. So the powerful people watched the young men and caught them in the act of disobedience to the king and turned them in. The king was bound to his word, so he had them brought in to face punishment. 

What was the punishment?

Oh, just a furnace heated so hot it instantly vaporized the guard who opened it. 

Yeah. 

These men stared down the furnace and said words that ring through my head over and over again each day. "Our God can save us. But even if he doesn't, he's still God, and we'll still serve him."

God can save us. But even if he doesn't...

The men were bound up and thrown in. The king and his guards watched through the doors and saw four men walking around inside, among the flames. 

Now you're looking up a few lines, checking something. Yep, three men. So who's the fourth? Hang on. I'll tell you in a minute. 

So the king had the doors opened, and the three men walked out, no longer bound, not a hair on their heads singed, not even the smell of smoke on their clothes. The king was aghast and said, "No other god can save in this way!"

I'm staring down my own furnace of sorts. It's hot. It intimidates those around me. Those guys were on to something. God COULD save me. He could. It's within his power to heal me. But even if he doesn't. 

But even if he doesn't. 

The king said something else when those men came out of the fire. He said, "These men were willing to lay down their lives for their God. Praise be to God! No other god can save in this way!"

Remember that fourth guy? Most scholars believe it was Jesus. Jesus didn't start at the manger. He was with God from the very beginning. He was with Shadrach, Meshach, and Abednego. And he's with me. And so are so very many others. I'm not in the flames alone. 

In 1 Thessalonians 5, Paul (a guy who knew a thing or two about hard times) wrote, "Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus."

I'm willing to lay down my life for my God. My life is his. God can save me. But even if he doesn't, may the world look at the way I stare down the fiery furnace and say, "Praise be to God!"

So...What Exactly Do You Have?

Explaining My Life With Ehlers-Danlos Syndrome, Dysautonomia, and Gastroparesis 

People often stop me to express their concern and love for me. They know I'm sick, and they care. But understanding what I'm sick WITH can be a bit of a challenge. When you live with rare or underdiagnosed conditions, it can be hard for people to understand what you're going through. If someone is battling cancer, we all understand what that means. Conditions like Lupus, ALS, or MS are common enough that people at least have an idea what they mean. But a diagnosis of Ehlers-Danlos Syndrome, dysautonomia, or gastroparesis can be harder for people, no matter how well-meaning, to understand. So what do these conditions mean? 

Ehlers-Danlos Syndrome is a genetic connective tissue disorder. I was born with it but wasn't diagnosed until I was 25 years old and a surgery revealed just how damaged my ligaments were. EDS is a collagen deficiency, so my ligaments, skin, blood vessels, and some organs are too loose and fragile. I partially-dislocate and hyperextended joints easily.  I wear ankle-foot orthotics and occasionally need to wear braces to stabilize other joints too. 

EDS often leads to dysfunction of the autonomic nervous system, the part of the nervous system that regulates functions you don't actively think about, like heart rate, blood pressure, temperature, and digestion. This dysfunction is known as dysautonomia, a term that encompasses many conditions. I was diagnosed with dysautonomia after fainting in the automotive section of a Wal-Mart. I struggle to regulate my heart rate and rhythm, blood pressure, temperature, circulation, and digestion. 

Likely a consequence of that autonomic dysfunction, I've also developed gastroparesis, a paralysis of the stomach. My stomach does not digest or empty as it should, causing pain and digestive distress and severely limiting what I can eat. 

This may be an oversimplification of the way these diagnoses are related, but it does help explain what's going on. 

So what does all this feel like? Think of having the flu. Your body aches. Your joints and muscles are sore, and it hurts to move. It's like you've hyperextended every joint, pulled every muscle. That’s what the EDS feels like. You feel weak and tired. You nearly pass out every time you stand up, and your head hurts. Your heart races to keep up. You have to muster up the will to take on simple chores, or they may be insurmountable. You find that you have to take a break in the middle of even small tasks. That's what dysautonomia feels like. Your stomach aches, and you're afraid to eat because it could make you ill. Anything you eat or drink refluxes into the back of your throat. You feel nauseated like morning sickness, your lower gut feels unsteady, and you have no appetite. The pain feels like giving birth through your intestines while someone squeezes your stomach. That's what gastroparesis is like. Some days are better, even nearly normal. Some days are bad--all this and worse. 

And what does this mean for me? I am sick. Barring dramatic medical advancements or a miracle, I will always have these conditions. I won't get better. I'll have good days, and I'll have bad days. But there's no remission. No cure. Very little even in the way of treatment. I could lie in bed. I'm sick, after all. But I don't want my life to BE these conditions. Yes, they are a part of my life, and they are like a lens that tints everything I do. But I love my life. It is full of happy, worthwhile things. I am wife to a great man who has dedicated his life to loving God and loving people. I am mom to two wonderful boys who face each day as if it's a grand adventure (and give the best snuggles ever). I am member of a church that has shown me such tremendous love and support. And I am a teacher to students who need my creativity and quirk to help them find their route to success. 

I do not plan to stop working. If you've read my magazine article or the article about me in the newspaper, you might have guessed my career is a source of great joy to me. Being a teacher is to me like being a musician is to Billy Joel or happy trees were to Bob Ross. It's not just my job--it's part of who I am. I love it. But I don't want my job to leave me too depleted to be the kind of wife, mother, or friend I want to be. So I'm having to rethink what my daily life looks like in the small things. Chores, errands, volunteering, making the day-to-day work. I plan to write separate entries about how I do that, at home and in my teaching. For now, though, suffice it to say that I can't do it all. I have to say no to some valuable things, and I have to find new ways to do some essential things. I may need to accept help. That's hard, but I can't keep living as if I'm “normal.”

People sometimes comment about the grace, strength, and faith they see in me as I go through all of this. That's humbling to hear, but it's a blessing. I'll share more about that in a future post too. 

For now, hopefully this entry gives you a better idea what life in my shoes (or rather, braces) is like. The simple fact that you're trying to understand shows me great love and helps me feel less alone. For more information about these conditions, I recommend:

www.ehlers-danlos.com

http://www.dysautonomiainternational.org

https://www.g-pact.org

I understand people may want to help. I'll share some ideas soon. In the meantime, if you want to show support, consider a direct donation to any of the above organizations, or purchase a Bravelet. When you purchase Bravelet jewelry, $10 goes to one of these organizations, and you get awareness jewelry that is actually fashionable. When people ask about your Bravelet, you can tell them about me and spread awareness while your money funds support and research. 

https://www.bravelets.com/bravepage/ehlers-danlos-national-foundation
https://www.bravelets.com/bravepage/dysautonomia-international
https://www.bravelets.com/bravepage/fight-digestive-tract-paralysis

Thank you for your love and support. Thank you for trying to understand this journey. You give me strength and encouragement. Thank you. 

Hands-On 3-D Figure Explorations

Check out more similar ideas on my website! http://www.teachbeyondthedesk.com/

Sometimes, in education, we lose the art of exploration. Especially in the middle grades. The standards are so challenging, the class times so short, the demands so many that we deliver canned notes and a textbook assignment and move on.

But it could be so much more. 

When kids learn by exploring and investigating, they come to understand the concepts naturally on their own. They're invested. They care. And they like it. Sure, you're thinking, "Really, Katie? My 8th graders can LIKE cross-sections of 3-D figures?"

Well...YES!

I wager, if you try it, you'll eagerly ditch the lecture and never look back. 

Here are some ways we've explored and investigated the properties of 3-D figures in my class. These activities cover properties of figures, nets, surface area, cross sections or slices, and views of models or figures. You can easily scale each up or down for your level. 

Properties of Figures, Nets, and Surface Area with Magna-Tiles

Magna-Tiles (http://www.magnatiles.com) may be my favorite. I bought them for my youngest son one Christmas but routinely borrow them for class. 

Divide students into small groups and give each 6 squares and 4 triangles.

Give them a couple minutes to just build with the blocks. Inevitably someone makes a shape and unfolds it into its net without me prompting. And the magnetic properties are just fun :)

Then have each group build a cube. Ask questions about the properties. "What shape is the base?" "What do we call each square of the cube?" "How many faces are there?" Etc. You've just taught or reviewed the vocabulary and properties of 3-D figures. And, GASP, without a textbook! Score!

Then have them unfold the cube into its net. I like to have them draw it on a small whiteboard and hold it up so we can compare. Were they the same? Similar? Can we make another net that still works? How many can we come up with? Can we tell how the faces must be arranged for it to work? Now you've upped the rigor by having them draw conclusions and allowed students with strong understanding to keep going. 

And watch. Are they smiling? Talking on task? Willingly trying to do more? Extending their understanding without you prompting them? Woah. 

Then repeat the process with triangular prisms and pyramids. 

Wanna take it a step further? With each shape, while it's unfolded into its net, ask them how they could find the surface area. Give them a ruler and let them try. Can they find a more direct way?

You've now covered several standards without cracking a book. And they were actively invested and interested every step of the way. A great closer? Have each group make a set of notes for a figure based on their exploration and what they found important and then compile a class set. Discuss. Anything to add? You can assign homework to practice the skills independently as you see fit, but I bet they remember more of this than anything we lectured at them or they copied off the board. 

Cross-Sections and Slices with Play-Doh

Ok, so the first time I did this, I learned something I didn't expect. Middle schoolers LOVE Play-Doh. Like, seriously. Even the uber-cool athlete boys. Even the boys who you know are doing drugs after school. No joke, they beg to take it home. It's a big deal. 

Now, that said, I like to get something out of the way right up front. "Just so we all understand, this is Play-Doh. We're making shapes. Not human appendages. Especially not those typically covered by underpants. Understood?"

Trust me. It's a needed conversation. 

Give each group one canister and let them play a minute. 

Then give a task. Have them make a sphere. They can make one for the group or divvy the doh up among each member. 

Then I give each group a plastic knife. I have a similar conversation about the knife. "This is a knife for cutting Play-Doh. Not people. Not materials. This is not Orange is the New Black. Understood?"

Have them slice their sphere in half. What shape is revealed?

Then issue a challenge. Can they slice the sphere with any single straight slice and get anything but a circle?

Repeat with other figures and slices. Most figures can be made by starting with a ball or snake and then smushing edges against the desk. Talk about slices parallel to the base vs perpendicular. What about diagonal cuts? Ask them how they would need to slice a figure to get a certain shape and let them try until they get it. 

Again, you can have them generate notes or do an assignment as you see fit. But they just learned a LOT of content willingly and maybe even happily. 

And little cups of Play-Doh would make great end-of-year gifts later :)

Views with Katie Kubes (or Other Connecting Blocks)

I bought a set of Katie Kubes (http://www.eaieducation.com/Product/520395/Advanced_3D_Cube_Models_Grades_6-8.aspx) from EAI one year and really like them. I use them just for this skill, but even then, they've been worth it since so many kids just can't visualize these kinds of problems on their own. 

You could probably improvise this with other linking blocks. 

I start by showing everyone an example. Many of them have no idea what it means to draw the "top view" of something. And the blueprint can be a bit challenging. Then I give each group an easy model and a blank or digital grid to draw the views on.  Then I just let them keep going, advancing through the models as their skill allows. If they've REALLY got it, I give them a reverse model--they get the drawn views and build the block model from them. 

Getting to see, turn, and manipulate the models really helps them visualize and understand what these kinds of problems are asking. 

So, there are some ways we explore and investigate 3-D figures using hands-on materials. Every time, I hear things like, "Class is over already?" "That was fun!" "When can we do Play-Doh again?" This approach is definitely worth the risk. I have virtually no off-task behaviors when I do this because everyone, even my reluctant learners, are engaged and curious. They don't even know they're learning so much! If it's too out of your comfort zone, start with a one-shape, one-concept mini-activity (boy, that was a lot of hyphens...) and see how it goes. And share your ideas! How do you get students hands-on with upper-grades math concepts?