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, just to make those I love would know 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!

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.  

I’m in an abusive relationship. It’s not a romantic one at least, not in the traditional sense of the word.

When I fell in love with her, she reminded me of a goddess. She was beautiful and kind. She never took no for an answer. She was unstoppable. She was an inspiration. To me and to everyone around her. She made me feel the highest high.

As time went on, I watched my goddess like creature slowly turn to stone. She suddenly became cold. She wanted me to stop caring about everything: my friends, my family, my hobbies, my career. She just wanted me to stay inside with her and listen to her. She wanted all my attention.

It started with bashing other people. Telling me why they didn’t deserve my time. She blanketed her insecurities by saying I was better than dealing with other people’s problems and to put myself first which really meant her and her illnesses.

Once I isolated myself from the people that I once would have laid my life down for, she turned it on me. There was no more self-love. Instead she instilled self-doubt. I wasn’t good enough to have friends and family, and love and happiness. I deserved her miserable and toxic company. All this emptiness was my fault and now I must live with it and her forever.

After she attacked my mind she started on my body. I had bruises everywhere. She’d trip me and push me into the walls. I was so sore and tired. I couldn’t eat. I lost so much weight.

All the confidence she once gave me was gone. I didn’t care anymore what I looked like. I didn’t do my makeup or change my clothes for days. Why should I? She is the only one who loved me and now she’s turned on me. I’ll stay in my sweat stained shirt forever. Maybe it will keep her away from me so I can be in peace.

It didn’t. Clothed or unclothed, it didn’t matter where I was, what time it was, or who I was with. She was always in my ear whispering about how much I’ve changed and how ashamed of me she was. Her presence made me vomit. She gave me headaches that lasted for days. I wanted to kill her.

I started to hate her. I hated her for making me hate myself. And every time I would get close to telling her to stay away from me forever, I would get flashbacks of that goddess. The girl who laughed in the face of fear. The girl who made me feel the best I’ve ever felt. I know she’s still there. I can’t give up on her.

When did she get so callous? Maybe if I can track down what triggered her abrupt change, I can help her get back to herself. What made her so abusive?

I need her to get back to who she really is. Who is she anyways? She is me. I am her. She is the reflection in the mirror that I refuse to look in the eye. She is my body before and after this disease. She is my greatest love and my mortal enemy. But can I live without her? How can I end this cycle? I can’t. I can’t walk away. I must continue to be destroyed and only hope that goddess will reappear. That her glow will radiate into my soul and warm me. That I can look at her and see love and not despair; that I can love this broken diseased soul that makes me who I am.

 

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 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 and 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.

 


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 and 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.

 


Bridges are built as a means to assist people in getting over the things that obstruct their path. We are constantly facing obstacles when it comes to our health, so we decided to build a bridge! Chiari Bridges is a non-profit network built by Chiarians for Chiarians. Our goal is to provide information, substantiated by published studies, in a way that is easy to understand. We encourage readers, to not only read our articles, but look up every study for themselves and read that too. Print it out and sit down with a highlighter; read it as many times as necessary until you understand; then use it to talk to your doctors. Our doctors are under no obligation to read our articles, but they should be willing to read officially published studies from journals, especially those specific to their profession. As many of our authors are patients as well, all authors sharing original pieces will be writing under pseudo-ghost names, to protect them from being black-listed by their doctors. Chiari Bridges is not affiliated with any physician or medical group. You should in no way use this site as a replacement for diagnosis, treatment, or medical from a qualified medical professional. The information provided on our website is strictly for educational purposes, in order to help further the understanding of Chiari, and its associated conditions. Our goal is to share our collective experiences and the information we have gathered, with those in need of answers, that it may increase your knowledge and guide you in conversations with your doctors.