Mental Health Resources Archives

Published: 1 May 2024

Written by Michelle Cole

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Categories: Expressive Writings, Faith Through The Fire, Faith-based, Mental Health Resources, Testimonials, WorthTheFight

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^[3]. 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 CSF^[9] Leaks cmtt_Idiopathic^[4] Intracranial Hypertension^[2] (IIH^[10])" data-mobile-support="0" data-gt-translate-attributes='[{"attribute":"data-cmtooltip", "format":"html"}]' tabindex='0' role='link'>pseudomeningocele^[1] (leak) with an SP shunt^[7] (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 OTC^[11])" data-mobile-support="0" data-gt-translate-attributes='[{"attribute":"data-cmtooltip", "format":"html"}]' tabindex='0' role='link'>Tylenol^[8]. 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^[5] pain conditions (such as Ehlers-Danlos, Chiari Malformation, and the other comorbids^[6]) 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^[12]/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!

Terms definitions

1. ↑ pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.

2. ↑ Hypertension ( Hypertension ) High blood pressure. It is relatively normal to have high blood pressure from time to time. It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned. Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke. Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds. Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage. Fortunately, it is easily detected and if found quickly there are many medical treatments.

3. ↑ depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.

4. ↑ Idiopathic ( Idiopathic ) Having unknown causes, spontaneous in origin.

5. ↑ Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.

Published: 19 January 2018

Written by Director of Mental Health Resources

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Categories: Mental Health Resources

Depression is more than simply “feeling sad.” It is a deep dark tunnel of despair that seems to have no end. It manifests as a cohort of symptoms, seeking to wreak havoc in every facet of your life. The activities that you once found enjoyable seem to take more energy than it promises to be worth. Your energy levels plummet, often resembling that of a slug crawling through peanut butter. Insomnia^[25], restlessness, changes in appetite, and memory loss are often present. Mood swings that change without permission, rational and irrational guilt, endless chronic pain, and suppressed emotions (“I’m fine, really.”), create an enormous obstacle that seems impossible to overcome. The chronic illness, loss of identity, and indifferent medical community make treatment challenging. The depression Chiarians^[26] feel can be overwhelming and isolating.

Chronic pain is something Chiarians face on a daily basis. Disabling pain that reduces your quality of life can make once simple tasks difficult to accomplish. Things like taking a shower or cooking become incredibly challenging. Fatigue^[27] can set in quickly, that even when we have plans that we’re excited about, just getting ready for them can be enough to put us back in bed. All of this can give us an altered self-perception of feeling useless, which enhances the depression. Chronic pain is both a physical and psychological condition, thus making treatment complex and difficult. Pain can cause depression and depression causes pain; it’s a vicious cycle.^[1]

Beyond the pain aspect, damage to one’s cerebellum^[21] is known to have cognitive^[22] consequences as well, and that includes emotions. While much of the research is based on the cognitive effects of Neurosurgeon^[17]" data-mobile-support="0" data-gt-translate-attributes='[{"attribute":"data-cmtooltip", "format":"html"}]' tabindex='0' role='link'>decompression surgery^[14],^[^2] many Chiarians have reported a noticeable cognitive decline years before surgery. In some cases, they complained of cognitive issues even before their Chiari diagnosis. One study pinpoints a “reciprocal connection between the cerebellum and hypothalamus^[18]” that govern “intellect, emotion, autonomic^[23] function, and sensorimotor^[19] control.” Another article on Secondary ADHD (Attention Deficit and Hyperactivity Disorder) speaks of the cerebellum and its known connection to ADHD, and even though the cerebellum is almost exclusively thought of in terms of its motor control, “it is the most consistently implicated and also the most robustly abnormal structure in the pathophysiology^[15] of ADHD.”^[3] The article attributes it to the fact that, the cerebellum is “second in size to only the cerebral cortex^[16], contains more neurons^[29] than the rest of the brain combined, and is massively connected to the cerebral cortex.” Among Chiarians, we have long-known that we all suffer from memory issues (both long and short term), anomic aphasia^[28] (repeated trouble remembering words), and various other cognitive struggles, and it’s important to remember that all of our thoughts, including those that are depressive in nature, stem from our brains (even our cerebellum).

Adjusting to the new normal is always a challenge, not only for us, but the ones we love as well. The loss of our former selves and our careers is very hard. Maybe you were a full-time parent or provider, caring for your family and you find yourself the one being cared for by loved ones. You find yourself depending on family and friends to do for you things that you once did for yourself, making you feel like a burden on those you love most. You may experience a sense of helplessness when trying to get friends and family to understand what you are going through. There will be friends and family who cannot or will not try to understand. They will think you are lazy or seeking attention. We must mourn the loss of old selves, careers, sometimes family and friends, as others must mourn their loss of your former self, and learn to embrace the new you in your new normal.

The struggle to have the medical community work with us, rather than against us, feels like an impossible feat. The worst thing that happens to us when dealing with doctors is being told that everything is in our head (which at least isn’t 100% wrong, but not in the way they mean it). In their ignorance, our doctors often dismiss our symptoms as mere depression, being a hypochondriac^[20], or a drug seeker. They tell you that losing weight will alleviate your problems. That may be true for some things, but no amount of weight loss is going to put your brain back into your skull^[30] and it’s hard to focus on exercise when every single step makes you feel like your neck is literally breaking. Instead of admitting that they have limited knowledge on Chiari, they attempt to make you feel stupid, inferior, and a bother to them. It’s so frustrating when those who are have taken an oath to help you and are charging you for that help, are not willing to learn about your condition. You become the educator, teaching those who are interested and willing to learn. You become your own best advocate!

There is hope. There is a light in the tunnel. The depression may not go away completely, but it can be managed. There are things you can do to help alleviate the symptoms. Joining a support group (in person or online) to connect to those who experience the same things you do can be a tremendous source of support. Encourage family and friends to join support groups to get a better understanding of your condition and to join groups for caregivers so that they have somewhere they can connect with people that are going through the same fears and frustrations that they’re going through (because the Chiari isn’t just affecting you). Get to know others that are fighting your fight, learn from them, stand with them, and maybe even volunteer to help others new in their fight!

There will be times when your body rails against you, making it difficult to get out of the house. But try to stay as active as you can with something! Try to continue with your favorite hobbies: reading, writing, crocheting and coloring books. Keep your memory working by utilizing crossword puzzles, Sudoku, puzzles (the box kind) and card games like Solitaire. The most important thing is keep talking with people: call a friend or make new ones if you need to. Find a therapist that you like. Share about what you’re going through and show concern for what others are going through. You are worth the fight!

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References:

¹ “Depression and Chronic Pain.” Self Help Center, <www.selfhelpcenter.org/pdf-publications/Depression%20and%20Chronic%20Pain.pdf>.

² Allen, Philip A., et al. “Task-Specific and General Cognitive Effects in Chiari Malformation Type I.” PLoS ONE, Public Library of Science, 15 Apr. 2014, <www.ncbi.nlm.nih.gov/pmc/articles/PMC3988081/>.

³ Eme, Robert, and Erin Sheffer. “The Cerebellum and Attention Deficit Hyperactivity Disorder^[13] A Case Study^[24] of a Cerebellar Chiari 1 Malformation.” The Practitioner Scholar: Journal of Counseling and Professional Psychology, 2012, <www.thepractitionerscholar.com/article/view/10503/7232>.

Terms definitions