The Other Side of Courage by Lace Bentley

This is a long one...

It's crazy how perspective changes. Years ago, a close friend was paralyzed, another killed, and a few others injured headed to Warm Springs, Nevada on a school day. I was supposed to be in that car, but last minute decided to go to school and take a math test. Hours later I was at my friend's bedside. He was stable, coherent, and understandably choked up. We were 17. He told us about hearing his spine snap, how glad he was that he was alive, and how scared he was of the future. Then he promised he'd walk again.

A year later he was still in rehab, learning to take care of himself without the use of his legs. He was distraught, angry, and not at all doing well mentally. It appeared he had started drinking, and I was worried he was on drugs in order to deal with the physical and mental pain he was in everyday. Jimmy never accepted what was happening while I knew him. It was hard to watch, and as time went on, became too much. He was self destructing, and I couldn't stomach it. I stopped visiting and contacting him, and lost touch. That was 22 years ago.

As a motivational speaker, many of my friends are determined individuals who were able to overcome major obstacles, and incredible odds. A few have even been paralyzed, but made their way out of wheelchairs and terminal diagnoses. Then there are those who are pushing through graduate school with crippling illnesses and failing health or major family stress. They all make it look easy. They make it look like anyone could do it. When you spend your time with people like this, it's easy to feel a need to achieve, and like there is never a good excuse to give up on a dream or goal. Throw in a hefty dose of personal aspiration, and there you have my unquenchable determination and insane fortitude.

The trouble is, I didn't start out healthy, and there was no accident. My genetic code makes defective collagen, and my ligaments, skin, and blood pressure don't work right. They never have. Maybe these same genetic anomalies are putting my organs and veins at risk of rupture the next time I fall down stairs, or slip on the ice. Unfortunately, we don't know yet, and insurance hasn't approved the test that can tell me. Still hopeful they will. In the meantime; no cure, no way to really slow what is happening, no way to know exactly how this will go down. Just symptom masking, protective gear (let's call it my superhero exoskeleton), and hope. Make no mistake, hope is huge. And there is a very real aging process at work. I can strengthen muscles, but I can't make the ligaments hold them up. I can protect my energy, while salt and fluid loading, but I can't change the unknowns that make my blood pressure plummet for no discernible reason. I can wear medical alert jewelry, but not control if the Emergency Department nurse dislocates a major joint on accident while trying to help me. I can be thankful I'm safe, and have a team of nurses and doctors around me, while knowing my joints and ligaments might be permanently damaged, because I don't heal from surgeries or torn muscles. And I can be brave 99 days out of 100. And...I'm not even 40 years old, and this is scary as hell. There is nothing I can do about whether or not I get hurt, and less I can do to heal the injuries. No amount of courage, positive self talk, or "not giving up" can change that.

I'm facing my own mortality, and sometimes worry the old, terrified me is going to sabotage everything. So I push harder than I should, and aim for the stars. Call it a coping mechanism. Moons are for rookies. I want Andromeda's sun, and I want it unfiltered. Forget about the heat. I think I'm invincible, or should be because other people seem to be.

Then I get too close and get burned. A smart person would back away, and consider not going too close again. I'm a very smart person...

This is not me surrendering, it's not me taking the easy road. It's sure as anything not rolling over and giving up. This is happening. I can plan to take over the world, run a marathon like I've always wanted, and be an internationally traveled speaker, stopping off in all the hottest spots to inspire, encourage, and rev up the next generation of world changers. However, there is a chance, no matter how bad I want it, no matter how hopeful, positive, or motivated I am, it's not all possible.

And...

And.

And, it's OK. This, my friends, is not fear. This is not giving up or giving in. This is what I am calling, "the other side of courage."

You see, sometimes, the bravest thing to do is be OK with what is, while learning to thrive inside of it. How many times have I recited the Serenity Prayer to keep me sane? So. Many. Times. Hundreds? Maybe thousands.

Courage. God, grant me Courage.

Can I have courage and still accept what is coming? Can I do it without others believing I'm a coward? Maybe. Maybe not. It's really not my problem what others think. I believe in me, I believe in God's plan for my family, and more than that, I believe in God. There are no coincidences. I don't need to hurt or worry over what others might be thinking. Let someone who isn't listening think I'm giving up. It just means they don't know me. It's none of my business, and out of my control what they think. And no one is living my life but me. Their judgement can rot their insides. It's not getting into mine. It can't be a shadow I fight, because there are too many shadows in life already. I'm not going there.

What if I was never meant to travel the world speaking? What if the plan for me is to stay close to home, and bring a little sunshine here? Then vascular EDS and POTS are a pretty clear-cut way to keep me grounded. If I cannot safely do something, how is it cowardice to not risk my life? Isn't courage doing something hard when we are scared, or would rather do something else? I'm scared, alright. Some days more than I'll admit. And I want to traipse around the world in style, sharing the incredible journey of hope, healing, faith and courage I've been given. But I need 6 pillows to sleep without dislocating ribs or shoulders, and my exoskeleton needs it's own suitcase. So do my dietary needs. My blood pressure drops me to the ground a few times a week, and has for a long time, often with injuries in tow. That's not going to go away because I deny the truth and refuse to use a wheelchair, cane, or crutches when I legitimately need them. I randomly need support because I can't regulate my blood pressure to stay upright. It can certainly be managed, and I can hire an assistant. But what if, at the end of the day, I don't want to go to the trouble, or risk the life of my children's mother? What if I choose safe, because it includes more secure promises of holding grand babies and growing old with my sweetheart? What if I decide I don't want to have to ride in the wheelchair in a strange city, or pay the insane baggage fees "just in case" I need the chair on the way home? And just in case what I want for my speaking career is possible, I'm going to keep reaching, and remembering.

Courage comes in many packages. Sometimes the package is in relaxing and using energy on what matters most. Missing the important stuff because I used all of my energy on other things is getting old. Courage can mean facing down and conquering the wheel chair by learning to walk again. That's freaking awesome! But the other side of courage might look a little different. It might look like learning to feel like myself inside the stupid chair, without letting it change me. Courage might mean delivering the speech, or teaching the class, or keeping my coaching appointments anyway, even if I feel uncomfortable with whatever combination of my braces I need to stand that day.

...or like letting go of Harvard, even if it could really happen. How am I going to spend 1-3 semesters in Maryland without my doctors, family, and support system? It breaks my heart, but I can't do that to myself or my kids. They are my world. Harvard is going to have to wait, or move along without me. Probably the later because I'm not getting any younger. But first I'm going to sit here and cry over my key board. This sucks. Really, really sucks.

Harvard will not give me more worth. No one gains worth like that, we only think they do. That doesn't mean it doesn't sound awesome, and I won't tell my grand-kids about the dream, the email, and why I chose what I did: not to worry about applying.

And...I can get graduate certificates from them online. I can take the best freaking care of myself possible, so I can meet my family's needs as long and as much as possible myself, without causing further harm to my body. I can be here when my loves get home from work and school, even if it means not getting to take that neuroscience class I pushed graduation off for. And I can be really, really sad about some of it, while cherishing the rest. No moment a mother spends loving her child is ever cowardice. It is authenticity. Authentic is a wonderful, noble, and courageous place to live.

So there it is. The other side of courage is beautiful. It is rich, authentic, peaceful, calm, and most of all, it is wrapped in love, tied up in ribbons of faith. It doesn't look the same for everyone. For some, it is the opposite action for the same challenge. Sure, I'll do my part to push off wheelchair permanency for as long as possible, maybe even the rest of my life. But if I can't, I'm going to have already worked through many of the emotions, so I can sit down and enjoy the ride. I can't undo what my body is doing, nor do I have to like it. But I can be the eye of the storm anyway. There will be days in my chair. It is a pretty chair. My value doesn't change if someone else thinks I'm giving up. I can't say that enough, because it hasn't sunk in yet. That part is still coming.

Authenticity, patience, acceptance, and Love. That is where I choose to live, everyday. If ore and more days are spent in a wheelchair, reassuring my friends and colleagues I'm really OK, so be it. Every now and then, I won't really be OK. That is alright, too. We'll manage.

This Spirit of mine is full of all sorts of spunk, fortitude and tenacity. My gifts come from God. Challenges and awareness are are gifts. I'm worried some days, angry for moments, and feel hopeless now and then. Those feelings pass. My courage to live life fully, no matter what challenges come though? That won't change. That is something I can count on, and a legacy I want to leave my kids with. Harvard can't give them that. But I can.

Believe in you, with or without whatever "chair" you might face in life. Courage is in the movement through it, even if someone else moves differently.

Wishing you many spoons on your path.

-Lacy B

The Burden is Light, After All by Lace Bentley

"...for my yoke is easy, and my burden is light."

He's not just talking about the weight of the burden! He is talking about what He would like me, you, and everyone else to carry. Light.

In a recent prayer, I asked the question we all do when things to seemingly to pot, "Why?" The answer? "Let them know it is OK to be human. Tell them it's part of the plan. Only in being human, can you learn to be Love." Learning to Love is the point. We didn't come just to "get a body." We came to become like God. We came to become and truly learn to Love, for "God is Love."

How will we ever learn to Love as Christ does if we don't get practice in patience, long suffering, compassion, faith, empathy, surrender, and humility? We can't. We won't.

And the path is sometimes cold, lonely, and dark. Remind you of anyone else's path? Only He never doubted. He never wavered. He never stopped sharing the light! Did He hope there could be another way, without the suffering? YES! Because while the Savior of the world came half God, he also came half man. Of course he had to conquer fear! Of course He had to hit a wall! The other side of ultimate fear is ultimate love though! He could not truly gain one without fully overcoming the other. Neither can we. He taught us acceptance and surrender to what is not only good, but what is best. He gave us Courage. He didn't plan more than was possible in His final hours, he prioritized. He also didn't look back. He walked into the darkness faithfully, humbly, with Power and Grace unsurpassed. He owned the Day, even though it took the only flawless life ever lived. He allowed His life to be taken, so He could rise again.

His life was flawless, divine, and the ultimate example. Maybe his courage wasn't undermined by His willingness to walk The Path only He could. This was, after all, a path He agreed to, fully embraced, and chose when He could see clearly the big picture.

And maybe my willingness to be OK with whatever comes is also brave. Maybe my grit and determination to grab life by the horns brought me this far so I can help others accept their own limitations with courage. Maybe it's time to face the fear of being human by accepting the gifts only humanity can give. And maybe I'm not crazy thinking I can make a difference by walking into my wheel chair, leg braces, and inability to run a marathon with grace and beauty. That just might be what He's hoping I'll do, because He knows it won't stop me. It might change the scenery, but I'm 100% certain it won't change what I can do. Not as far as He's concerned. If I can't do it, chances are, He doesn't need it done. At least, not by me.

No, being OK with what is happening is not fear or giving up. Quite the contrary.

Accepting life, living it to the fullest, and prioritizing where my energy goes, that's a little something I like to call, "the other side of courage."

Embrace it. It's in there...

Reinhold Niebuhr's "Serenity Prayer" by Lace Bentley

This poem.

It has gotten me through more than I can ever voice. I'd like to share my favorite version of this incredible tribute to true freedom, true surrender, and the other side of courage, with all of you. May grace, courage, and wisdom light your daily path, as they have mine.


God, give me grace to accept with serenity
the things that cannot be changed,

Courage to change the things
which should be changed,

and the Wisdom to distinguish
the one from the other.

Living one day at a time,
Enjoying one moment at a time,

Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,

Not as I would have it,

Trusting that You will make all things right,
If I surrender to Your will,

So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.

Amen.

Wheels Up! ...er...Down! by Lace Bentley

This happened...

Thankfully I listened to my doctor, and got them sooner rather than later. Her argument was that by the time I know I need them, it will have been too late. She was right. After 3 days in a wheel chair, two weeks after telling her I didn't think they were necessary, I owe her a hug. Is it OK to hug your doctor? Mine are quickly becoming as familiar as my parents. I really want to hug them sometimes. A lifetime of being sent to shrinks and given anxiety meds wears on a girl. Now, I see 2-3 doctors a week, and not one of them sends me away feeling crazy. Oddly enough, I haven't had an anxiety pill in weeks, even with everything going on. Just haven't needed one. That's a perk.

Hubby wanted to know what I'd like for Christmas. Health? Peace of mind? To know I won't be alone if my blood pressure nose dives and I can't move? Yep, that one. I'll take the challenges, just don't leave me alone.

So we shopped together...

It occurred to me what a bummer it could be that I need medical equipment for Christmas. Then it occurred to me how fortunate I am that I can afford it (well, mostly), and that my husband didn't even blink. "Of course, I've been looking at wheelchairs so you don't have to worry about school or your speaking." And I cried. The phone case? It's just freaking cute! And mine is old. Now I can keep it around my wrist when I'm walking. I won't always need it like that, but some days I feel worse than others. Options are good.

A friend laughed with me over the awesome story I'll have to tell about that time I took an Introduction to Brain and Behavior final in a recliner. The proctor even let me go into the bathroom stall alone to pee. Good thing it wasn't a drug test! HAHA!! Get it? No? Yes? I mean, sure, it would have been more interesting had she insisted on coming in, but hey, I can't have all of the coolest stories. But seriously, try keeping POTS under control in the middle of a horrible flare up, without all those water bottles? Not happening. It is annoying how often I'm interrupted to pee the last 4 days, but hey, I'm walking on my own again! Haven't even had a close call in over 20 hours. Maybe I'll just use our camping potty when no one else is home so I can keep working! Most of my neighbors will just laugh anyway. This could work...

How are you, by the way? My life got so crazy, it's been hard to keep up on what's happening with the people I care about. My Bestie called for a pep talk because she hates research papers and I'm a big fat nerd, so love them. That's what we need in these moments: to still feel normal, needed, seen for our strengths. Tonight she and I are going to see the new Star Wars and eat Cafe Rio. Normal. Blissful. Mundane. I'll take it.

There's what I really want for Christmas. When I struggle with flare ups, will you remember I'm still the same me? I get it's freaky to see me in a wheel chair, short of breath for the first, even 50th time. That's cool. I'll tell you I'm just being dramatic so we can relax. And I can see the concern on your face. It's really OK to ask. I need to talk about this. It's a relief you do, too. Makes me feel more normal. If possible, will you pull up a chair, though? Or help me move to a place we can see eye to eye? Tipping my head up in that thing makes me dizzy, and I want to see you. We all need to be seen just as we are. All of us. So help me see you, too, even if I'm in my chair.

And sometimes the dizzy hits without warning. Let me know if it's OK to hang on to your arm. On my strong days, I'll give you mine in a heartbeat, because I still can. But only on good days, or we'll both be trying to get up off the floor! Yes, it will be a great story later, and we will laugh at it, but maybe let's not press our luck on shaky days. It will mean more than I can say though, on my good days, when you remember how strong, courageous, and down right stubborn I am. Let me be there for you, too, as much as I can. Now and then, I just can't. But most of the time, nothing has changed.

So I guess that's what I needed to say today. For Christmas this year, and every year, when you see me, really see me. And please let me really see you. Let's be weak and strong, brave and scared, nervous and comfortable--together.

I might be in a chair next time, maybe in the hospital for observation, or testing. And maybe I'll be on a run, or figuring out how to do my PiYo in my new leg braces. Whatever is happening in either of our lives though, don't let it distance us. You can teach me patience, acceptance and surrender. I'll help you out with compassion, seeing people instead of disability, and how to laugh when life hits you in the head. We can do this, and if we do it together, we will both be better for it. That's what I want for Christmas.

Oh! And a new Dominion expansion pack! ...I kinda spent my Christmas money on a wheelchair bag for the hard days.

Now to eat lunch and get the reading list created for the Psychology of Sex and Gender I get to help instruct next term! I've got this...so do you!

And... by Lace Bentley

I can't concentrate today, but need to study for my last final. Let's see if getting it out helps...

Yesterday I woke up feeling a little weak, but that's pretty normal. I also felt clear and happy, mentally. After the family all went their ways, I decided to do a load of laundry for each of them and clean the bathrooms. They kids have been doing all of their own laundry for 5 years now, so that's great. Saves on my energy, and we don't have to worry about adults who can't wash their own clothes. Additionally, learning to clean a bathroom is a rite of passage in our home during a child's 6th year of life, so that's not a chore I do much, either. Besides, with a bunch of boys, what mom want's that job? Gross! They do pretty good...mostly.

Yesterday though, I wanted to bless my family with some of the "feel good" I had coursing through my veins. Two hours after the first bathroom though, I was on my way to the emergency room in an ambulance. Thank goodness I had the foresight to call a neighbor and hubby for help. I started to loose consciousness in her van, but we were on with paramedics, so just pulled over, and they came to get me. It's all a blur, and I was so scared. My mind raced, "Will they know what to do? Please don't give me fainting salts! Can't I just go to sleep and wake up when you fixed it? Don't sleep, they won't know how to take care of you! Tell them you need air, tell them you are suffocating. God, please let someone know what EDS and POTS are...they might make it worse on accident...I just want to sleep...Please, please don't make it worse. I'm so dizzy. Somebody catch me, my legs won't work! Please don't stand me up."

The next thing I remember is someone removing my shirt, and subluxing my shoulder and elbow at the same time. "Ouch, please be careful, I have EDS..." She tells me I'm alright, but my shoulder is burning. Damn. Note to self: next time, remove my own shirt before the paramedics get me to the ER. How will I do that without them thinking I'm insane?

Today I can tell my first rib and probably clavicle are out of place. I'm, worried about this shoulder, because I injured it pretty bad falling down stairs on Thanksgiving, and it's acting up again. I'm not calling the doc yet though, I have a final tomorrow, and three other doctor's appointments today.

But I can't shake the fear that we don't know for sure what happened, and at any point, medical care could actually make it worse. Hubby thinks I made myself sick using the toilet bowl cleaner. It has bleach in it, and I laid down in my room, the same room with the bathroom I had just cleaned with bleach, to try to assuage the dizziness. Then I woke up feeling horrible, and started making calls. He's the only one with a viable idea of what happened, and bleach has always been problematic for me. Crap, I just remembered, I used Clorox wipes. They have fragrance. I can't do perfumes and fragrances, I knew that. All I wanted was to clean the bathroom for my husband.

So I'm sad, and I'm hopeful. Angry and determined. Tired, and discouraged. Motivated and dizzy as hell.

I see the immunologist today. It's just a hoop though, we know I have MCAD. On a happy note, a cardiologist nearby is only a few days out instead of 6 weeks, so I might be able to get the official POTS diagnosis sooner. After yesterday though, I really don't want to do the tilt table...But we finally know it's not in my head. Well, literally, there's not enough blood and oxygen in my head. That's almost funny...

Something has to help. As much as I joke about a housekeeper being a medical necessity, this isn't funny. Cleaning is enjoyable to me. There's nothing like a job well done, and born of love for the people you live with. I won't let these disorders take that away, even if I do end up with a professional housekeeper. Yesterday I did good. Three loads of laundry, and one great looking bathroom. We found out my coagulation factor is too high, but I don't have any blood clots. Also, I'm not having a heart attack or stroke. All in all, it was very productive. And I came home to my order of hydration tablets sitting on the table. Mmmm, watermelon flavored salt. It's a thing...

It will be OK. And I hate it. And. What a cherished, validating, necessary word. I'm tired, and I won't ever give up. This is frustrating, and I'm so very thankful for the friendships being built. I hate that my neighbor saw me crawl through my house to get to the door, and I'm so incredibly grateful she came. I wish I could give my kids normal, and I can't. Yep, sometimes it just plain sucks. And my kids are learning levels of empathy and compassion most adults can't grasp. The silver lining might be laced with something I wish wasn't there, but I trust God. He's got my back, always has. He told me to load my food with Himalayan salt before I ever knew what POTS was. He told me I would not survive another delivery, and my doctor confirmed my uterus was at high risk for rupture 10 years later. She told me a hard hit to the stomach would have resulted in my bleeding out in seconds, He told me as much as I love kickboxing, I had to stop for my own safety. That was hard to give up, not gunna lie. And I listened.

Just over a year ago, God told me He would never leave me, that my kids need me, and that I had important work to do, so put the gun down. He has kept that promise, and I have done my part.

God told me this life is so short, and I'm an overachiever. I asked for the ridiculous learning curve on compassion, empathy, and true Love. He told me he was so pleased with my courage, he gave me all I asked for, and an Eternal family months before it all fell apart, so I would have the support I needed.

Then He told me I make Him smile everyday.

I don't know how He told me, but I just know it is true. He's smiling, and I'm safe. This is all part of the plan, and I was happy when I could see everything clearly.

Scared is OK for a minute, but fear is my enemy.
So I breathe, because I can.

And I take my test, because it's who I am.

I do hard things,
I make them look easy.
Some days are pure Hell,
And that's OK.

I know who I am, and I don't know why.

I know it's going to be OK. I know it with every cell in my body.

I don't want to have this happen again, and it probably will.

So now I'll go pick out that medical alert necklace...

So Many Appointments, So Little Sleep...by Lace Bentley

It gets old needing a nap. It gets old needing to call another doctor, physical therapist, or clinic. You know what gets really old? Having to call another doctor when I need a nap! Good grief...

It's funny when I fall asleep on hold, then they answer. "How can I help you?" "...hang on, I can't remember who I called, give me a second to wake up, please..." Epic!

The struggle is real, my friends. You know this though, don't you?

But I'm also very grateful for modern medicine.

Dear Doctor, thank you for finally hearing me and helping me find the help I needed.

It's been a struggle, and the battle is not over. In fact, it will never end. But at least I'm on the right path, and we know what to call it now.

The first time I heard of Ehlers-Danlos Syndrome, my therapist was telling me about her struggle. I asked, and was working on handling people I cared about having a hard time. Perfect timing for her to get a diagnosis. I was deeply affected by what she was telling me, but not only because I truly cared about her. She was describing my life. I could see the all too familiar exhaustion play out on her face as she shared. She told me just enough to let me know how human she was, and appropriately assuage my concern for her. This started a journey that would take me to the pits of despair, and mountain tops of freedom.

I'm not crazy after all! Though all these phone calls might drive me to drink...

But seriously, hours on the phone every week managing my care, is getting overwhelming. Know what I did today? Started calling at 4 p.m. Yep. That way, no matter what, I only have an hour. I can handle an hour.

So that's what we have to do. Managing the stress and overwhelm isn't easy some days. Today though, I am thankful that offices close. Office hours are the light at the end of a very long tunnel. Thank you to the, 1.5 million doctors that I need to call. You are all closing soon, which means the messages I left won't be answered until next week. Maybe they will keep interrupting my musings for the next few minutes. That's fine, at least I'm not falling asleep on hold!

Hey, there's one now! Gotta take this call...

Wishing you many spoons on your journey!

Oh! And look how cute these compression stockings are! I'm getting the royal paisley, because if you're going to wear armor, you should look good doing it.

It's Not in My Head...by Lace Bentley

I've spent so many hours in the ER, at doctor's offices, and online, trying to make sense of what is going on with my body. At 12, I thought things might be a little different for me. I didn't make the drill team because I couldn't keep time, and there were moves I couldn't make my body do. At 14, shin splints and fire in my lungs meant I had to quit the distance team in track. Because the pain was still too much after a few weeks, I joined the women's shot put and discus team. To this day, I'm sure I only lettered because my iron clad determination to not quit impressed the track coaches. The next year, I fell coming out of a starting block competing for a spot on the 4x100 team. There was "nothing wrong" but that knee still gives me trouble to this day. At 17, I knew I was different. My energy was ridiculously low. I needed 2-3 hour naps after school on most days, just to get through. My mom blamed it on my 6 a.m. class, but I knew there was more to it. A lot of kids were in that class. As far as I knew, none of them were having as much trouble as I was. One day out of ten, I could not drag myself out of bed until noon.


In college, I loved hanging out with friends. My dating life was good, and being on my own was definitely my style. The freedom! But who turns down dates with a guy they like because they are exhausted, and want to sleep? And how do you explain that when you're standing in front of him, clearly not sick? A 19 year old guy with options won't stick around long after that. My friends thought it was funny I wouldn't go dancing with them Friday nights until I got a nap first. I blamed it on X-Files most of the time, and a made up crush on Fox. I mean, he was cute and all, but he wasn't Val Kilmer.


When hubby and I were expecting our first baby, the muscle spasms and aches were almost unbearable. A friend gave me a maternity griddle that was a god-send. Still, as a young relatively healthy new mom, the levels of physical pain and discomfort seemed unnatural. Now I know that's just pregnancy with EDS, but then I thought I was just complaining too much, and being too sensitive. So we bought more pillows, and spent our evenings in the heated pool at the apartment complex. It was the only time I felt normal everyday. Good thing it was the summer in a dessert!


When it came time to deliver, doc thought a mild episiotomy would be enough. Then came my first eight pound baby, and I ended up with a 3rd degree tear. That was miserable for three months. later, my c-section incisions took 5-6 months to heal, and both popped open in multiple spots after the staples were removed. Even the doctor acknowledged the seeping opening at 6 months post-delivery was odd, but said I'm just a unique case. If only he knew. Thank goodness it finally closed. We stopped having babies after that because the nightmares about my guts spilling out at the grocery store were causing so much anxiety, I was afraid next time I'd never heal. I carried 4 babies to full term. Three of them were over 8 pounds, all of them healthy. It's more than a miracle my uterus didn't rupture considering the shape it was in when they took it out last year. "You have the largest uterine varicosities I have ever seen," and "You are lucky you stopped having kids, your body would not have handled another pregnancy," were vindicating on one hand, and terrifying on the other. How did no one see that before? That's right...it was all in my head. It appears what I called a gut feeling that I should not carry another baby, was actually my body trying to save my life. Good call my dear, exhausted body. I'm so glad I listened to that instinct.


I remember being in so much pain after taking care of little ones each day. How much I wanted to do, but couldn't because I couldn't make my body work, caused a pretty serious depression. It took all I had to take care of the kids, emotionally and physically. Everything else fell apart. Appointment after appointment, test after test, left me feeling like a bipolar hypochondriac. I was given medication for depression, anxiety, and 24 visits to a therapist who deals with "phantom pain." Great, I'm Freud's ideal patient, I thought. One point for female hysteria. Thank you, Freud. Jerk face.

Now, 11 years later, I have answers. I'm not crazy, in fact I'm pretty far from it. And I am ill. In some ways, very ill. Years without the care I needed, though I was begging for it, have taken their toll on my body and mind. And it's not as bad as it could be. Yes, I will be wearing some pretty substantial joint splints for the rest of my life, and there are so many unknowns still. I'm already looking into wheelchairs because my legs get so tired. But at the very least, no one can send me away thinking I'm making it up again. I'm not crazy. I'm not making it up. Oh, and I really do feel this sick all the time. Not a wimp-I'm an EDS warrior.

For this reason I choose to see myself as an amazing woman. Successfully raising 4 great kids, running a household (OK, the house is messy most of the time...) and kicking some serious a$$ as a full time student the last 3 years, I've decided there's not a lot that will hold me back. I impress myself, especially now that I know I have EDS, and most likely a few other obscure illnesses. I'm text book for Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). Those tests are coming up in the next few months, it will bum me out if I really do have both. I also most likely have Positional Chiari 1 malformation, but have to fly to Denver for that test. Good think I like Denver. Hubby and I need a vacation, so we'll make it our 20 year anniversary trip. With the medical bills pilling up, Hawaii is probably a bad idea anyway. Darn, I really wanted to take my late morning nap on the beach. Maybe someday, and if not, that's OK, too. I'm not giving up Monet's gardens at Giverney though. Not a chance.

EDS is not how I saw things going down. All these years, I started to believe my doctors that I was just a little crazy (my close friends will tell you I am anyway) and needed to change my diet. Well, since MCAS tells my body I'm allergic to food and water, I can't remove everything I'm "allergic" to. Plus, it changes on a regular basis, so this weeks menu probably won't work next week anyway. Aside from gluten and lactose, I eat what I want now. I'll feel like hell anyway, might as well stop losing weight, and start enjoying food again. Mmmm, mushrooms! Oh, I'm skipping chicken and garlic too. Those stomach aches are not worth it!

I know there are so many of us "zebras" out there, saving energy, trying to bank up for the family party this weekend. Many of us think we are going crazy, and if we aren't we feel we certainly will. It is a nightmare having disorders so obscure, most doctors don't even know what they are. But my friends, we are not alone. We have each other, and we have faith. Ask questions, do your homework, and fight for your right to feel like crap on a regular basis. And some days, it's OK to give up and go back to bed or a few hours. All of the doctors visits, physical therapy appointments, splint fittings, evaluations, tests, procedures, surgeries, injuries getting out of bed or putting on clothes? All of that is real. Those are your stripes, those are your badges of a challenging illness. You are living the life of a warrior. EDS, POTS, MCAS and the rest of it, are not for the faint of heart. We go though hell for the basic care we need to live a semblance of normal, especially as we age. Like a dear friend reminded me today though, "When you are going through hell, keep going!"

Staying in the fight is the brave thing to do. It is also much harder than giving up. We need each other though. We need each other's stories, victories, and struggles, because they remind us we are not alone. Zebras travel in packs for a reason. I think they are a fitting analogy for what we are going through on so many levels. Keep up the fight, even if you need to be angry for an hour or a week. Do what you need to, then get back in the game.

Wishing you many spoons on your journey!