Some names have no meaning and some names mean absolutely everything to and about the bearer of the name. Our name falls into the latter category. Despite the more popular acronym, WTF! stands for Worth The Fight!

The origins of our name began with someone that I love to the moon and back, who was struggling with depression. This person was cutting themselves and trying to mask their pain with drugs and alcohol, and attempted suicide before I realized what was going on with them.

Life isn’t easy for a Chiari family. From the moment that I was told that my head and neck pain wasn’t just pain, but something wrong with my brain, everything in our family changed. Everything became centered on me.

“Don’t stress mom out.” “Let mom rest.” “Can’t you see how much pain she’s in?”

Surgery came just weeks after diagnosis for me. It was in hopes that I could become the wife and mother that I once was, the wife and mother that my family so desperately needed me to be. Two years after decompression, I had a revision to fix a pseudomeningocele (leak) with an SP shunt (Subgaleo-peritoneal). It was about a month after this second brain surgery that I realized that there was much more going on in my house than I’d ever dreamed.

It was just after 2 am when there was a bone-chilling pounding on our front door. It was the kind of pounding that would awaken even the heaviest of sleepers – the kind of pounding that you’d never forget. My husband and I rushed to the front room, greeted by siren lights and multiple people shining flashlights into our windows. It was a firetruck, an ambulance, and the police. We opened the door and one of the officers informed us that they had reason to believe that our daughter had attempted suicide. Words could never express the feelings that I had as I ran desperately to her room unsure about what I’d find when I opened the door. She was alive, but incoherent and unaware of her surroundings. The officer intervened to assess her condition, asking if she was able to get up and come out of her room to talk. The one officer talked to her and another two pulled us aside to talk to us, as the paramedics stood by. Everything was surreal. How could I concentrate on hearing and answering questions when I didn’t even know if our daughter was going to live or die? The officer explained that she had called a friend after taking pills with wine or champagne. The friend told his mom and together they called the police while he continued talking with her. She had initially told this friend that she was in a park across town, so the police had been scouring the park looking for an overdosed teenage girl, and when they couldn’t find her, they pinged her cell phone which led them to our home just in the nick of time. My emotions raced. How could this be when she had come to our room earlier that night, looking tired, telling us how much she loved us, and that she was going to bed? (We should have known that something was wrong, but again, I had been so lost in my own world that I couldn’t see all that my children were going through at the time.) After assessing our daughter, the attempt was deemed “credible and in immediate need of emergency care,” and she was transported by ambulance to the county hospital emergency room.

My husband and I followed in our car. At the hospital, we were informed that she had taken multiple doses of my husband’s blood pressure medications and multiple doses of my opioids. The doctors said that the first concern was her heart, “if” she survived through the night. The next concern would be liver toxicity since the opioids all contained Tylenol. And that if she survived and made it through those steps and deemed stable, she would be held on a 5150 (Involuntary Psychiatric Hold). While we prayed at her side her blood pressure dropped down to the lower 50s/20s. We called for the doctor and they told us that there was nothing more they could do (it was too late to try to pump her stomach), she would either survive the night or wouldn’t. They told us to try to keep her awake, so we walked laps around the ER every single time her blood pressure dropped in an attempt to keep her awake. I don’t know how I held up my head that night, I was running on pure adrenaline at the thought of losing my only daughter. She survived the night and while we still had to wait for the toxicity reports on the liver tests, they allowed us to walk with her over to the Psychiatric Department of the hospital.

After a twenty-four-hour evaluation, our daughter was moved to a San Francisco hospital for a week-long intensive therapy program. We couldn’t visit her for the first few days. We were limited to scheduled phone conversations. At first, she just wanted us to go get her. It’s incredibly hard as a parent to be in a position where you legally cannot just take your child home. But we knew she needed help beyond what we could offer, and eventually, she realized that she needed that too.

Over the week, she worked on herself and we worked on creating a safer environment for her to come home to (they actually have a checklist when something like this happens involving a teen). I won’t go into all the details of how we tried to safeguard our home and family after realizing that Chiari hadn’t simply set out to steal just from me physically, but its attack extended to our entire family in every way. But there was a website that I happened by that really caught my attention.

I happened upon a story “To Write Love On Her Arms” by Jamie Tworkowski. It’s a story of a group of friends learning how to fiercely love a friend struggling with depression, addiction, self-injury, and suicide. They would write the word “LOVE” on her arms; the same arms that she had been carving the words, “FUCK UP” on. They figured that if she went to cut her arms again, she’d be reminded how greatly loved she really was.

Chronic pain conditions (such as Ehlers-Danlos, Chiari Malformation, and the other comorbids) can take a toll on us and how we think, how we see our future and the value that we see us having in this world. As we see ourselves become increasingly dependent on our family members, we see the burden that it places on them, and it hurts. We know that they say that we’re ‘not a burden,’ but we see it. When we hear those that we love, deny that a burden exists, we know they’re just saying that because they love us. “It’s nothing,” they tell us. IT’S NOT NOTHING! IT’S EVERYTHING! BECAUSE THEY MEAN EVERYTHING TO US! Perhaps it would be healthier to say that ‘we’re worth the burden,’ instead. No mother can deny that having a newborn baby is a burden of love. It’s absolutely exhausting, but we know that despite the burden, no matter how hard it gets, that little baby in our weary arms is absolutely worth the work! (Just like my daughter and all that she went through, there’s nothing that I wouldn’t have given to see her through it. She was worth it!” And as I continued with my fight, I realized that I was too and if we were going to fight to win this battle, we had to have very real conversations about my fight. My family had to be allowed [encouraged even] to admit that they get exhausted without fear of hurting me or offending me. It enabled us as a family to put the blame on my conditions so that it was Chiari that has robbed us, not me. It had robbed all of us, and we weren’t going to play games and put it on anything or anyone else. We were going to fight back as a family. So if anyone has a problem with our name or our acronym, I’m perfectly okay with letting that be THEIR PROBLEM.

If you have a family member struggling with EDS/Chiari/Comorbids, whatever, you’re going to have to strengthen one another. WE HAVE TO STOP DENYING THE MAGNITUDE OF THE FIGHT, acknowledge it (every part of it), and fight back as a family, where every single person in that family KNOWS (beyond a shadow of a doubt) that they’re WORTHY! That even if we as a family must go to the ends of the earth together, it’s worth it, because each of us is WORTH THE FIGHT! And if someone forgets, write it on their arm to remind them!


This article is dedicated to my daughter, MyKaella, who taught me what it means to live knowing that we’re WTF! I’m so proud of the woman you’ve become and the woman that you helped me to become!


‘Twas the night before Christmas and despite the sleeping spouse, there was still one stirring in the Chiarian’s house. The stockings were hung by the chimney with care as she hoped despite the pain, she’d be able to be there. The family was nestled all snug in their beds, while fear of disappointment danced through her head.


While everyone’s talking about holiday cheer and how there’s laughter in the air, for the chronic pain patient it’s not that easy to get into the holiday spirit. We remember the happier holidays of the past and all that people want to see in us, but there are so many thoughts acting as obstacles in our path.

Will I have the spoons (energy) that I need to make it through the day?
We speak of energy in terms of spoons (The Spoon Theory, by Christine Miserandino). We know what it was like to have normal levels of energy to accomplish tasks and how much more energy every task requires now that our bodies went crazy. You don’t appreciate the energy it takes to get ready for something until you need a nap after every shower you take.

What will I do if I experience a pain flare and how will everyone else respond to me if I do?
Almost worse than the pain itself is living in fear of the pain, especially when we know how it seems to ruin everything for everyone, not just us. For the patient and their family, they know far too well how pain can ruin even the most important of occasions. And for the patient, we know the look on the faces of those we love when we have to cancel or depart early. It’s one thing to see those faces a time or two in a lifetime, but it’s a lot harder when it happens time and time again, and there’s nothing you can do about it.

Will I be able to engage?
People rarely realize how much time we really spend alone (or at least alone in our thoughts). We think about so many things. Should I tell them about what I’m facing? Should I answer how I’m really feeling, or just say, “I’m fine”? Am I talking too much about my conditions? Is it just me and my brain, or is it them? Are my feelings about this even rational? Am I losing my mind? Most of these thoughts are actually healthy thoughts, but when we second guess engaging with the world and live in constant fear of offending, it becomes detrimental to the way we see our value on this earth.

How many days of pain will I experience after the holiday is over?
We’ve learned from those times that we’ve tried to “push through the pain,” that this will be a factor nearly 100% of the time. While the healthier us could push through the pain, that often backfires when it comes to chronic pain. After a few hours of festivities (no matter how light the festivities seem to be), our nervous systems usually respond to the stress with inflammation and pain (which can last several days or even weeks).

Will I live up to what’s expected of me or am I going to let down everyone I love, yet again?
Even when nobody around us expects much from us, there’s always a part of us that still longs to be like our former selves – to have the strength and energy that we once had. The truth is, despite everything we’ve been through, we want to be more for those that we love. Our lives were forever altered and reconciling that with a lifetime of dreams isn’t easy. We’re not feeling sorry for ourselves, we’re mourning and trying to adapt to the reality of all that we face. It hasn’t been easy on our families either, they’re in mourning too. Chiari/comorbids have stolen hopes and dreams from all of us, but we don’t have to let it dominate us. We can figure it all out together and be a stronger family for it!

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It’s hard having a chronic illness that isn’t all that understood.

As patients, we have to fight on absolutely every level!

Before diagnoses, we fight for someone to hear us when:

  • We explain to them that our neck is to weak to hold up our head.
  • We’re trying to hold our heads up with our hands when laying back isn’t an option.
  • Our necks start spasming to the point that we feel like we’ve been internally decapitated.
  • We have to ride in the front seat to try and minimize the car sickness.
  • We suddenly can’t balance to walk.
  • Our eyes start twitching beyond what could ever be considered normal.
  • We aren’t able to do what we could just a short time ago, or even a few hours ago.
  • That we want to scream and cry because of the pain, but we know it will only make it worse.
  • We go to say something and can’t find the right word because it just isn’t in our memory bank at that moment.
  • We spontaneously can’t read because we have double vision, blurred vision, or our eyes wont stop jerking around to focus, yet an hour later we’re fine.
  • We explain that doctors not knowing what’s wrong doesn’t mean that nothing is wrong (even when they say nothing is wrong).

Around diagnoses, we fight to:

  • Process the magnitude of what we’re facing.
  • Learn all we can so we’re prepared for the important decisions before us.
  • Find the right doctors who are knowledgeable and trained in our condition(s).
  • Fight to be stoic when we know that it’s not just our bodies enduring all of this – something is breaking in our souls and we’re fighting to not let it change us for the worse.

When our doctors continue to dismiss our symptoms, we need our friends and families to understand:

  • That we’re still the same wife/husband, mother/father, sister/brother, aunt/uncle, and/or friend that you’ve known and loved for all these years, and we need you now more than ever!
  • That decompression is not a cure! In fact it typically fails to relieve symptoms over the long term nearly 50% of the time when pathological conditions aren’t treated beforehand.

Making homemade stockings and cutting flowers for wreaths.

Baking treats and devouring them with hot cocoa by the tree that we spent hours decorating.

Shopping for just the right gifts and wrapping them meticulously, so those I love know just how special they are.

I remember all the traditions that we did together as a family before my symptoms hit hard.

Now, I am reduced to shopping the internet for gifts, but still, I do the best I can to find something special.

I usually start out trying to help decorate, just to end up on the couch watching everyone do what I can no longer do.

I sit here and watch despite the pain I feel from the few decorations I put on the tree because I so want to stay a part of things as much as I can, while I can, even if it’s nothing more than a shadow of what I once was.

Do they know how much I still long to be a part of it all? How much I long to be a part of them?

I sit here and as I ponder how much things have changed and all that I am now, I find myself stuck in my head.

Do they see how stuck I am?

Do they see how afraid I am, that each holiday might be the last that I have with them, and they have with me?

I’ve got to get out of my head and be present.

The best present that I can give them really is just me, fully engaged in showing them that they’re the best that has ever happened to me!

The week before Christmas in my home is filled with gift wrapping, cookie baking, dogs barking, people talking (loudly)… On a normal day, we feel the pain in the stiff neck, the backache, the headache, (the list could go on). When we are surrounded by stressors, they can take a toll on a person, especially a chronic pain patient, so it’s important that we “just take a minute” when it’s needed.

Christine Miserandino created a theory called The Spoon Theory as she struggled to explain her chronic pain (from Lupus) to a friend. The theory basically goes like this. Every day we get twelve spoons. Every activity we do uses a spoon or more. For example, a shower may use three spoons, leaving us only nine for the rest of the day. During this time of year, we have to be careful how we use our spoons, so we aren’t trying to borrow spoons from the next day/week, because the old adage is true… what we do today, we pay for tomorrow.

I’m learning to let go of things that I simply can’t do anymore or ask for help when it’s available. If you have family, ask for help and put them to work. Let them wrap the gifts or do the cookies. Allow them to help. I’m not very good at that. I know how I like my stuff done, but I’m learning to be gracious even if it’s not all ‘my way.’ I saw a meme the other day that said, “the first Christmas wasn’t perfect so it’s okay if yours isn’t either.” There are no truer words.

Many of us struggle with sensory overload. We can’t deal with loud noises, flickering lights, crowded places, etc. I have chronic tinnitus. It’s always there. So, when it gets too loud for me – when people are over-talking each other, the TV is blaring, grand-kids are running, and the dogs are barking – I excuse myself and I go to the bathroom and take a few minutes to just ‘be.’ They really will not follow ya to the bathroom, so take your moment and breathe, and allow peace to come in. Do that as many times as you need to. I promise it makes a difference. If you are asked, just say, “Well, I have to do what I got to do,” and let that be that.

I hear many times of families who just aren’t very understanding or supportive. We will not convince them in one visit. Michelle Cole wrote an amazing article called Dear Family. It’s on how to tell families and friends what we need from them. I would encourage all to read that. Should there be that one family member who just starts on how yoga helps or how we aren’t praying enough, whatever their “answer” is for our issues, as much as we would like to come back at them, don’t! It’s not the time, and it’s not worth the spoons, so for their sake and the sake of others there (and for your sanity), just let it go. We know the truth. We know some will never understand no matter what, because honestly unless it happens to them, they can’t know. Enjoy your day no matter the naysayers.

Pace yourselves. Do a little each day. Epsom salts baths are a Godsend for me because they help tired sore muscles and joints. If your body says to ‘lay down,’ listen. Our bodies dictate what we need and we have to be mindful. Remember, stress exacerbates our symptoms. As best you can, try to be as stress-free as possible. I know it’s hard. I really do, but none of us need or want a flare (or to spend the next week in bed). Remember, if you can’t do anything (if you can’t do the first cookie, wrap the first gift, buy the first gift), that is okay too! It really is! Above all, give yourself grace! Oftentimes, we extend grace to others but leave ourselves out. Don’t do that! Give yourself grace and while you’re at it, give yourself a little holiday hug!

I pray we all have the best Christmas, remembering why it’s celebrated in the first place. As the admin of our Chiari Prayer Group, my prayer is “May God bless you and keep you. May The Lord make His face shine upon you and be gracious to you. May the Lord lift up His countenance upon you and give you peace!” (Numbers 6:24-26)

 
My sister asked me how she could pray for us specifically. Here’s what I’ve come up with.
 
 
 

As we lift up a warrior fighting EDS, Chiari, and/or Comorbids,
We are believing You for:

Knowledgeable doctors/surgeons
With hearts for the patients that are trusting them
Ears to hear them
And a willingness to unlearn and relearn

CSF leaks to seal
Cranial masses to disappear
Narrowed venous structures to widen
And cranial pressures restored to normal

Sticky filums to release
Stretched spinal cords to retract
Conus Medullaris’ to rise
And elongated medullas restored without consequence

Collagen restored without mutation
Intravertebral discs moving back into their rightful place
Laxity issues resolved
Straightened odontoids and clivus bones
And craniums to rise

Spines to straighten
Cerebellar tonsils to rise
CSF flow restored
And syringes (syrinxes) dissipated

Muscles reconditioned
Paralysis reversed
Vision completely restore
Ringing in the ears to cease

Habitual good night’s rests
No insomnia, painsomnia, chronic fatigue, or narcolepsy
Breathing issues corrected
Restless legs calmed

Nerves decompressed
Even vagus restored
Motility perfected
Inflammation gone
And pain a thing of the past

Depression replaced
Hearts seasoned with grace
Families restored
Where no one’s needs are ignored

Thank You, Father,
That despite all we’ve endured,
Your grace continues to be sufficient.
That none of this has taken You by surprise;
You knew all we’d face, yet You still chose each of us and call us Yours.
Our hope is in You and You alone,
The Author and Perfector of our faith,
We stand on Your promise that You still have a plan for each of us!
We might not know what it is or understand how we’ll get there,
but You are a good Father, and we trust You completely.

In Jesus’ Name, Amen!


(Note: This prayer was written to become a collaborative prayer, that we can add to as needed.)

When a Chiari woman passes away it changes so much for so many.

It leaves a hole in the hearts of the Chiari community because, even as dysfunctional as we are sometimes, we know we’re all in this together!

  • We know what it’s like to have conditions that so few understand, including our doctors.
  • We know how humiliating it is to watch our bodies change and our muscles deteriorate as we fight just to hold up our heads, even for just a few hours a day.
  • We know what it’s like to have our symptoms and pain consistently dismissed as psychosomatic.
  • We know what it’s like for doctors to say how easy the surgery will be only to find out that they had no clue of what they were talking about.
  • We know the heartbreak we feel when those we love the most choose to believe our doctors instead of us.
  • We know what it’s like to be told that the surgery cured us, while everything in our heads and necks seemingly rebel in disagreement.
  • We know what it’s like to have to fight for every aspect of our treatment, from imaging to specialist, and still have help denied to us.
  • We know what it’s like to have to find strength through the pain each day and still try and carry on the best that we can for those that we love so much. We long more than anything to get back to who and what we once were. To run and jump and enjoy life with those we love most, but the pain is too overwhelming. The truth is that those times that we did try left us in even more pain; so, we are forced to learn to choose what we do wisely.
  • We know the genetic nature of what we have, even if our doctors don’t, and we all long to figure it all out and fix this very broken medical system that relies on information that is centuries old, before our children and their children are forced to face what we face.
  • We know what it’s like to live in fear of leaving all those we love, as they are our reason for living.

It leaves a hole in the hearts of her family that should be respected.

To them she is so much more than a Chiari Woman, she is my wife, my mother, my daughter, my grandma, my sister, my aunt, and the love of my life.

Chiari didn’t just rob their loved one, it’s robbed the entire family for years.

They too have longed for what was and often cried behind closed doors for all that likely would never again be.

Her husband has had days where he was so petrified at the thought of losing her. Sometimes that fear manifested as anger and frustration, but it wasn’t her that he was really mad at; He was mad at the Chiari that was taking his wife from him. He regretted those words from the very minute that he gazed upon her eyes as she heard them. He couldn’t make her forget those words, they pierced her soul too deeply, so he internally committed to just try and show her why he loves her. Despite his frustrations with the situation, he admired this amazingly strong woman who was facing more pain than he could ever understand. He’s cried out to God privately for this soul mate that he committed to so many years ago. He feared losing her and he did not know how he could ever hold everything together like she did, but he had to try because there was so much was on his shoulders. He never talked much about the weight he carried in it all, because he knew what she was facing was already more than she could handle. So, he learned to grieve as silently as he could – to understand what he could, to empathize as he could, to remain as strong for her and the family as best as he could.

Her children have learned to grieve in silence as well. They learned to face life and all the obstacles they faced without making waves at home. How could they? They saw the pain that flared when things had stressed her in the past. They didn’t want to cause that again. They longed having the mom that they used to have, the mom with the strength to climb every mountain with them, the mom that made every challenge in life seem conquerable. They admired her strength and never understood how they could admire so much in her yet hate the fact that she wasn’t always there for them anymore. Even when she so desperately tried to be there the brain fog often dominated and took over the conversation entirely, this conversation that she probably wouldn’t remember for long. They resented her for it but knew that it wasn’t her fault. Like everyone else that loved her the most, they said so many things that they regretted. They knew that they often came across like they hated her, but the real truth was there was no one in the world that they longed for more. They’ve always hated seeing her in pain, yet her pain served as a constant reminder of the future that they feared in their future. They remember when she told them about the hereditary nature of the genes passed on to them, with tears in her eyes. Would they have what she had? Would they become as symptomatic? Would they have the courage to fight it as valiantly as she did? Should they have children one day? The reasons for concern were endless.

Depending on when she became symptomatic, her parents have likely spent endless days and nights in hospitals and emergency rooms. They’ve spent years learning all they could and even learned to recite her diagnoses with detailed explanations because they’d became so accustomed to these conditions that so few doctors could pronounce, much less treat. For years they made sure to always have her complete medical chart in hand with official documentation, in case they were challenged by a medical professional or anyone dared to call their daughter “a drug seeker” or “psychosomatic.” They spent countless hours trying to dull the tortuous pain they saw her go through, and spent many more hours researching creative home remedies to give her a sense of relief, even if it was only momentary. There were times they prayed for God to just go ahead and take her, so she wouldn’t be in anymore pain; and then felt guilty for even thinking it. Then one day the screaming stopped, the pain was gone, but with it so went their daughter.

As Chiarians, we all deal with thoughts of death more than “normal” people and “normal” families. We go from surgery to surgery knowing that this might be the surgery that ends our fight altogether, yet we hold on to hope that it will be the surgery that helps us to be all that we’ve yearned to be once again. Our community has found strength in our unity. As we remember those we’ve lost and face our fears about our morbidity, let us continue to unite to change this for us and our future generations that we love so much.

*This article is dedicated to all the Chiari Angels and their families, as well as those that are still fighting the fight. Hold your families close; forgive quickly and as often as necessary. We never know how much time we have and we usually never really know how much we’re truly loved until it’s too late.

**Note: This article was not to leave out all of our valiant Chiari brothers fighting the fight, it was just easier to write from one point of view.

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Like any marriage, we’ve had our rocky moments. We’ve both showed our ugly sides more than we like to admit. I’m not sure when he changed, but somehow along the way in our 27 years of marriage, my husband morphed into this amazing man who is EXACTLY what I need in every way!

My husband doesn’t have the same responsibilities that most husbands have. He works full-time to provide for his family and does more than his fair share of household chores. But my husband has a wife with several chronic conditions. He has a wife that has been in some level of pain almost every day for over 18 years! He’s seen me through ten surgeries since we’ve been married, eight of them being in a five-year period. That is enough to exhaust the strongest of men, but exhausted or not he has stood by my side through all of it.

I first became symptomatic following a car accident. We were both 29 with three young kids (ages 2, 5 and 8). I was initially diagnosed with double whiplash, but when that failed to get better, I was left with no reason for why I couldn’t hold up my head. It felt like my neck lacked the strength to hold up my head for more than an hour at a time and on some days, not even that. To add insult to injury, I went without a diagnosis for over a decade. It couldn’t have been easy to stay by my side when all the doctors were saying that they couldn’t find anything wrong with me.

Over our decade without answers, I continued to decline. I started having severe cognitive decline and memory loss. I’d have periods of time where I lost my ability to walk and use fine motor skills (so I couldn’t write or pick up small things). He helped me walk to my classes and even helped me do my homework when I couldn’t write. He didn’t have the answers, but he knew that I desperately needed them, and he was determined to stay by my side even though by doing so it was putting an unfair burden on him. He didn’t have the help-meet that he needed in life. He just had this sick, scared wife, with no means to any end to her suffering.

When I was finally diagnosed, the choice for decompression was an easy one. It was 2010 and I was now 39 years old. I had lost 10 years and the possibility of getting my life back and engaging as a wife and mother again was something that I couldn’t pass up. We never expected this “easy surgery” to take the turn that it did. We knew that there was a chance that it would be unsuccessful at relieving all of my symptoms, but never in a million years did we think that decompression would open Pandora’s Box on my need for surgeries. From 2012-2015 I needed seven additional surgeries. Each surgery had its own recovery and complications. And with each additional surgery, I became increasingly dependent on my husband for help, but not once did he complain. This was affecting his life too, but not once did he concentrate on that. Not once did he think of it as being unfair to him to have to care for me, even though it really was. I’m now covered with scars on my left side from my neck to my groin, one night he raised my pajama shirt and gazed intensely upon them. He started kissing them. When he got to the scars covering my stomach, I pushed him away and with tears in my eyes, I told him that I wasn’t comfortable with him touching me there. He looked me in the eyes and told me that he didn’t see me the way that I see myself. He said that when he sees my scars, he’s reminded of all that I’ve had to fight through and what a strong woman he’s married to. “I wish that you could see yourself the way that I see you,” he exclaimed. All my insecurities just melted with his words of affirmation.

This man who vowed to love me for better or worse, richer or poorer, in sickness or in health, really meant it, and those vows were continually put to the test every day of his life. And he wasn’t seeing the polished-up version of me that others tend to see. He saw the frustrated me, the defeated me, the hopeless me. The me that went from one pair of pajamas to another. The me that gained over a hundred pounds on nerve meds that ultimately made me worse. The me that started to stutter and slur and hated myself for it. The me that drooled in front of people and whose nose ran uncontrollably when I sat down to eat. The me that lost control of both her bladder and bowels and that had to wear a diaper for years. The me that no longer could wipe herself or shower without his help. The me that took so much of my pain and frustrations out on him, when he’d take all of it upon himself in an instant if he could save me from it. Not only does he not complain or criticize, but he became my biggest cheerleader in life!

He listened to me as I read studies to increase my knowledge on what I’m facing. He lets me yell to him about the incompetency of doctors. He’d make small jokes to help me make light of the seriousness at hand. When he forgot things, he’d say that he was having a “Chiari moment.” I’d remind him that he wasn’t the one with Chiari and he insisted that it was sympathy pains. When he developed a herniated cervical disc and we looked at his MRIs together, the first words that came out of his mouth were, “well, I don’t have a Chiari Malformation,” as he pointed at the cerebellar tonsils. I often feel so unworthy of his love, yet if you talked to him, he’d tell you how unworthy he is of my love.

There’s no denying his real role in my life; he’s my hero!

*This article is dedicated to my husband, Johnny (my hero and the love of my life) and to all the other couples trying to hold a marriage together through this crazy fight we face.  


FOR ALL MY NON-CHIARI FAMILY MEMBERS AND FRIENDS… I really NEED you to listen to this and just try to understand! 


I know there’s absolutely NOTHING I can say to help you understand the pain that I go through; what it feels like to have pain all the time, in places that I didn’t even know that I could have pain in. To feel like someone is grabbing the back of your skull at your neck and literally trying to pull your skull right off of your head. I know there’s NOTHING I can say or do, to tell you how discouraging it is to have doctors tell you that they have “no idea why you’re hurting so bad,” and suggest that you should see a therapist, because obviously, if they don’t see it, it must be just psychological. And while I know your intentions are good and I know that you love me, I CANNOT think of anything to say to help you understand how incredibly hurtful it is to have those that are supposed to love you the most, those shoulders that are supposed to be there for you to lean on, tell you that you’re having a pity party, or  how they “wish you wouldn’t talk about it all the time” (and sometimes it’s not said that nicely either). And for MY KIDS and HUSBAND to have to carry so much on their shoulders and to feel like they have nobody to talk to about it, because everyone’s “tired of hearing about it.” And worse, since it’s genetic, for them to see how you treat me in my pain, and fear that if they’re diagnosed, that you will treat them the same.


You don’t understand, but my brothers and sisters with Chiari do. They understand it all, because they’re living it too. I know you don’t understand the bond that we have, but even though we’ve never met face-to-face, we’ve cried so many tears, and prayed through so many surgeries together; we’ve lost friends together while doctors still try and claim that Chiari can’t kill you (even with death certificates that say Chiari in hand). We’ve lost friends that just couldn’t take the pain anymore, and we cry together because we know that those thoughts have been our own and we struggle to find a way to keep pressing on, together! I know you don’t understand the bond, but it’s real.


I’m not saying all this to make you feel bad, God forbid you feel bad, I’m saying this because I STILL NEED YOU. You weren’t put in my life by mistake and what I’m going through physically and mentally is frightening and heart-breaking and I need you here by my side. You think you don’t have time to see me through all these surgeries and diagnoses, I don’t either. There’s so much more that I wanted to do with my life and now I just want to hold my head up without pain. I NEED you to change your heart towards me and all that I’m going through. I need you to call me, and just love on me. I need you to remind me of all that I am, despite my pain – that I’m stronger than I often feel like I am. I need you to remind me that there is still value to me still being here on earth. Because in those dark moments, when I look at all I’ve lost and everything that my family has lost through this fight, I need to hear it in someone’s voice besides my own. I need you to remind me how important it is that I fight this vigilantly, so that if God forbid one of my kids have to fight this fight, I will be the best possible advocate I can be for them. They’ve missed out on so much with me being sick. And should my fight on earth come to an end, I need you to stick to them like glue, and help them know how fantastic they are and that they’re not alone. Remind them that their stronger than they think, just like their warrior mom! Remind them that they have a purpose and a destiny to fulfill on earth, and to not to let anything stand in the way of that. If they get knocked down, pull them up again, every single time! Don’t worry, I’m not planning on going anywhere, this isn’t a suicide note or anything. I still have every intention of changing this fight of mine and winning it. But it’s hard sometimes and I really need you to fully understand how much I NEED YOU! Help me win this!


***Michelle originally wrote this on Facebook in 2016, with tears streaming down her face. The response from the Chiari community was astounding. What was astounding was not that so many liked it, but that so many Chiarians resonated with the heartbreak of it. It has been slightly edited for publishing. It was originally written with explicit language, that we at Chiari Bridges felt was a “most accurate” representation of the raw emotions that so many of us feel when we encounter these types of struggles in our family dynamics. However, this “clean” version is being created, for those to that are not comfortable sharing content with “strong language,” but still relate to the article and wish to share it.

The original (explicit version) of this article.


FOR ALL MY NON-CHIARI FAMILY MEMBERS AND FRIENDS… I’m going to cuss, but I really NEED you to listen to this and just try to understand:


I know there’s absolutely NOTHING I can say to help you understand the pain that I go through; what it feels like to have pain all the time, in places that I didn’t even know that I could have pain in. To feel like someone is grabbing the back of your skull at your neck and literally trying to pull your skull right off of your head. I know there’s NOTHING I can say or do, to tell you how discouraging it is to have doctors tell you that they have “no idea why you’re hurting so bad,” and suggest that you should see a therapist, because obviously, if they don’t see it, it must be just psychological. And while I know your intentions are good and I know that you love me, I CANNOT think of anything to say to help you understand how fucking incredibly hurtful it is to have those that are supposed to love you the most, those shoulders that are supposed to be there for you to lean on, tell you that you’re having a pity party, or  how they “wish you wouldn’t talk about it all the time” (and sometimes it’s not said that nicely either). And for MY KIDS and HUSBAND to have to carry so much on their shoulders and to feel like they have nobody to talk to about it, because everyone’s “tired of hearing about it.” And worse, since it’s genetic, for them to see how you treat me in my pain, and fear that if they’re diagnosed, that you will treat them the same.


You don’t understand, but my brothers and sisters with Chiari do. They understand it all, because they’re living it too. I know you don’t understand the bond that we have, but even though we’ve never met face-to-face, we’ve cried so many tears, and prayed through so many surgeries together; we’ve lost friends together while doctors still try and claim that Chiari can’t kill you (even with death certificates that say Chiari in hand). We’ve lost friends that just couldn’t take the pain anymore, and we cry together because we know that those thoughts have been our own and we struggle to find a way to keep pressing on, together! I know you don’t understand the bond, but it’s real.


I’m not saying all this to make you feel bad, God forbid you feel bad, I’m saying this because I STILL NEED YOU. You weren’t put in my life by mistake and what I’m going through physically and mentally is frightening and heart-breaking and I need you here by my side. You think you don’t have time to see me through all these surgeries and diagnoses, I don’t either. There’s so much more that I wanted to do with my life and now I just want to hold my head up without pain. I NEED you to change your heart towards me and all that I’m going through. I need you to call me, and just love on me. I need you to remind me of all that I am, despite my pain – that I’m stronger than I often feel like I am. I need you to remind me that there is still value to me still being here on earth. Because in those dark moments, when I look at all I’ve lost and everything that my family has lost through this fight, I need to hear it in someone’s voice besides my own. I need you to remind me how important it is that I fight this vigilantly, so that if God forbid one of my kids have to fight this fight, I will be the best possible advocate I can be for them. They’ve missed out on so much with me being sick. And should my fight on earth come to an end, I need you to stick to them like glue, and help them know how fantastic they are and that they’re not alone. Remind them that their stronger than they think, just like their badass mom! Remind them that they have a purpose and a destiny to fulfill on earth, and to not to let anything stand in the way of that. If they get knocked down, pull them up again, every single time! Don’t worry, I’m not planning on going anywhere, this isn’t a suicide note or anything. I still have every intention of changing this fight of mine and winning it. But it’s hard sometimes and I really need you to fully understand how much I NEED YOU! Help me win this!


***Michelle originally wrote this on Facebook in 2016, with tears streaming down her face. The response from the Chiari community was astounding. What was astounding was not that so many liked it, but that so many Chiarians resonated with the heartbreak of it. It has been slightly edited for publishing. What was astounding was not that so many liked it, but that so many Chiarians resonated with the heartbreak of it. It has been slightly edited for publishing. It was written with explicit language that we at Chiari Bridges felt was a “most accurate” representation of the raw emotions that so many of us feel when we encounter these types of struggles in our family dynamics, and therefore the decision was made to publish it in its raw form.

We have published a “clean version” of this article.


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