Brain Injury

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    Community Voices

    Be careful not to wear blinders when approaching a problem.

    <p>Be careful not to wear blinders when approaching a problem.</p>
    14 people are talking about this
    Community Voices

    The Pandemic caused me to be a hoarder and a slob

    #Anxiety #Depression #LymeWarrior #TraumaticBrainInjury #traumatic grief

    My house looks like a slob lives here. I have paperwork all over in every room. Just looking at it hurts my brain. I try and clean it up or organize it but I end up just moving papers in a different spot.

    I get into bed at night with trash on my bed. I have to move it all just to make room for myself. I lay there praying to God and asking why? Why did all those people have to die. I cry myself to sleep praying to see my loved ones that were taken since the pandemic started.

    I had just gotten my life back after a 14 year battle with co-infections from Lyme disease. I finally was leaving my house, seeing my friends, shopping. I had 9 months of somewhat of a life back then I was forced back into my house. Then in 2020 I got bit again and im back fighting for my life again. New symptoms to deal with. I grieve the life I had before.

    What I lost besides loved ones was myself. I don’t know who I am anymore. My first grandson was born during the lock down. I was able to see him 6 feet away 3 days after he was born. It was like I was looking at someone else’s grandchild not mine. I was not aloud to hold him because I can’t get a flu shot. The last one almost killed me.
    I found out later everyone was holding him except me. This was so hurtful and my son allowed it to happen. It started to become to painful for me to even go to see him. What was the point if I had to watch from 6 feet away. I still do not feel any connection to my grandson and that is my son’s fault. He is 2 years old now. We aren’t aloud to babysit him or take him anywhere by ourselves but her parents are. I pray to God I’m still alive when and if another grandchild comes.
    Funny thing I was aloud to hold my friend’s grandchild with no problem. When I was able to hold my grandson I was in a hazemat suit he was 8 weeks old. No one else had to wear one except me. Now that’s personal. I had 5 friends become grandmothers and they posted it on Facebook no one was wearing a mask or a haze mat suit. I’m not even aloud to show pictures of him to my friends because he’s not old enough to consent to it.

    I had to go into therapy because of this behavior which was personal and not due to the virus. At least that is what I was told by my therapist. My heart is still broken and it’s still beating but for what. ?

    This is not the way it was supposed to be. This is not the life I wanted or imagined. I am just existing.

    I know hoarding crafts that I will never make, jewelry I will never make it has to stop. A lot of stuff I bought most is now expired. Did I throw them away? Nope.

    I could keep writing about all I have lost but everyone has lost. So there is no point I guess. I did lose my Mom to the virus watched her die over zoom for 9 weeks. Then I found my best friend, my brother dead in his apartment. I think he was murdered but I can’t prove it. Now I deal with a fractured sternum and PTSD from that.

    Hoarding is caused by lost, trauma, stressful life events, a brain dysfunction. I’m not putting anymore labels on myself. I just wish I could stop it. I wish I could afford someone to help me get organized as I no longer can do that. I can’t afford much of anything. I sell things to make money but it’s not enough. I’m too sick for a real 9-5 job. I do have a on line wholesale shopping club with weight loss products but that’s still not enough. I’m worrying myself to death literally.. I need extensive dental work due to lyme. I was scammed out of my savings for that. More loss. It effects me emotionally, physically, mentally.

    I’m just rambling now it’s late here and my brain is tired. Im actually getting tired of living because it’s just so damn hard. I’ll write some more later. Thanks for reading this post. Since 2019 I lost 27 friends and family. Isn’t that enough???
    #LymeWarrior #PTSD #LivingWithPOTS #PudendalNeuralgia #ChildhoodAbuse

    16 people are talking about this
    Community Voices

    An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence

    Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.

    I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.

    On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.

    The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.

    Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.

    Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.

    I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.

    I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.

    I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.

    The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!

    I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.

    Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.

    My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.

    I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.

    The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver

    6 people are talking about this
    Kathleen Friel

    Changing Health Perspectives With Cerebral Palsy and Metastatic Breast Cancer

    “It’s best to institutionalize her. She has no rehabilitative potential.” This is what a neurologist told my parents 47 years ago after I’d failed to meet developmental milestones related to movement. I was then diagnosed with cerebral palsy (CP). My parents found me a different doctor, a doctor who recognized my full potential — which changed the trajectory of my life. CP stems from a developmental brain injury that has gifted me with garbled speech, an “abnormal” gait, and reduced fine motor skills. My disability is obvious to people when they meet me. They may not know what “CP” is, but they know there’s something up with me. Often, they assume I am neither intelligent nor capable. Growing up, school was a great opportunity for my intellectual growth — and for teaching me how to live with an obvious disability. Particularly during school transitions – like starting at a new elementary school and then moving on to middle and high schools – I learned the importance of educating others about my cerebral palsy. Education was the key to acceptance. My mom would come visit my class after I’d moved to a new school. We would tell the story of my life with CP: the multiple muscle and bone surgeries I’ve had to straighten my legs, the frustration of not being able to speak clearly, and the reality that I wasn’t much different than other kids. Each time we offered one of these educational visits, my life at school rapidly improved. Kids stopped teasing me. I made more friends and felt less lonely. People simply got it. I became more outgoing and more involved in school activities. My everyday life with cerebral palsy is quite ordinary. I take out the trash. I do laundry. I sleep late on weekends. To me, my body is normal and my life is normal. My speech sounds perfectly clear in my head. I’ve built a life of convincing people that my visible and audible “impairments” do not affect my intellect, my potential, or my freedom. This simple fact seems to mesmerize many folks. I went to college and then graduate school — usually as the only student in class with an obvious physical disability. I earned a doctoral degree in neurophysiology – the study of how the brain works. Now, I run a research laboratory at an Ivy League institution in New York. The goal of my lab is to develop innovative interventions to help people with cerebral palsy optimize their fine motor skills. My many wonderful colleagues and I have made substantial gains in understanding how the brain controls movement in people with CP — from which we can build more effective interventions. Not only do I strive to help kids improve their movement, but I also hope to show them and their families that they can live happy, exciting lives. I want kids with disabilities to know that even if society judges them for their visible disabilities, they may derive abundant joy from proving people wrong. In July of 2018, though, I had a sudden bout of severe back pain. After a couple months of inconclusive medical testing, I was diagnosed with metastatic breast cancer (MBC). Before a tumor was visible on a mammogram, breast cancer cells had found a home in my spine. As a friend with MBC characterizes this diagnosis, “Do not pass go; do not collect $200.” Now what? While early stages of breast cancer are curable, MBC is terminal. As my wonderful oncologist described it, once cancer cells metastasize beyond the breast, we MBC patients have “cancer dust” forever circulating through our bodies. Eventually, these “dust bunnies” claim eminent domain over our organs. Therefore, we often must be on strong treatments for the rest of our lives. The average longevity of a person with MBC is about two to three years — although many live longer. I’m lucky that I’ve already beaten the odds. MBC treatments do not cause some of the stereotypical chemotherapy side effects. I haven’t lost all of my hair, and I haven’t lost weight. MBC isn’t throwing me any bones, though. My MBC is mostly invisible from my appearance, but I struggle with joint pain, nausea, and fatigue — and there are so many more symptoms I have. After one treatment, I lost my fingerprints. My medications make it even more difficult to speak clearly, which further isolates me when there’s so much I want to say. I’m now in a world that contradicts the lessons of my life with cerebral palsy. It’s quite the conundrum. I’ve spent my life proving to people that my disability does not affect my intellect or potential — which is true of my CP — but MBC is an invisible, terminal condition that affects multiple aspects of my life. Christine Miserandino popularized the “spoon theory” of life with chronic illness in which energy is represented by “spoons.” Let’s say that a healthy person has 30 spoons of energy per day. Dressing and showering may take two spoons, a workday may take ten spoons, and so on. People with health challenges, though, might only have 10 spoons per day. We may often have to make careful choices about how we use our “spoons.” If going to a doctor’s appointment takes five spoons, then we have to figure out how to accomplish the rest of our day with only five spoons left. I’ve tried to use my favorite childhood tool — education — to improve my relationships while living with MBC. I’ve educated people about what my diagnosis means, my prognosis, my treatment plan, and my needs. However, some don’t believe it, and they’ll say, “You look fine!” Living with MBC can be isolating, but I’ve now spent more than half my diagnosis in a pandemic, which exacerbates the loneliness. In my work, I continue to write grants for projects I likely won’t live to complete. I feel driven to make as big an impact as possible in the world knowing that my window of opportunity could close at any moment. I want to be remembered as the “cool aunt” by my nephews and nieces, though I’m their only aunt who doesn’t have a dog. It may be a hard sell. I’ve maintained an active life after my MBC diagnosis. Nearly a year into my diagnosis, I earned my black belt in taekwondo. Still, MBC is a beast. When my MBC is visible to others, it is awkward – I think it’s a reminder of my mortality. I’ve lost several meaningful friendships with people who say they can’t bear a “front row view” to my struggles. I get it, but it stings knowing that their discomfort overrides their value of my friendship. With both CP and MBC, one thing I’ve always known is that my true friends are the real deal. Their love, acceptance, and good humor keep me afloat. Here I am, needing folks to understand the severity of my MBC diagnosis after spending a lifetime teaching people that my CP does not affect my abilities. This health challenge has gifted me with several lessons. Talking about health conditions should not be taboo. Whether a person has a visible or an invisible health condition, listen to them. Everyone is likely living with struggles of some sort. Acknowledging our needs, our talents, and our mortality gives us all space to live authentically. We all deserve this sacred gift.

    Community Voices
    Community Voices
    Ishun @snooties

    Retiring for My Mental Health and Grieving the Loss of My Profession

    I don’t think enough people talk about retirement. Perhaps retirement is becoming a privilege to so few that we just don’t talk about it much. If you have been careful, thoughtful, and fortunate enough to retire with any degree of comfort, you know you are blessed. However, even under pretty good circumstances, retirement is a unique developmental transition that we don’t really think about until we get closer to the event. We might work with a financial planner, imagine trips we would like to take, or even places we might move to. We don’t necessarily think about what it would be like to leave a career that you spent time, effort, and heart in building. It’s actually even more complicated because there are different pathways to retirement. For me, that pathway was the result of a mental health crisis. When it happened to me, I was floored, gutted, afraid, and I felt alone and unable to really talk about it with anyone other than my therapist. At that time I discovered the Mighty, and read posts and stories from other people who found their way to retirement in the same way. I have found this community helpful in so many ways when I experienced my crisis. It is helpful to know that you are not alone and to get simple authentic words of support from other Mighty members. It’s helpful to hear people’s stories, to just know what this experience of living is like for others. While still a lived experience for me, I am further along in the process of retirement. It has been a complicated journey, but what I would like to focus on is the grief of losing a profession. It is not as painful as grieving a person, but it is profound and transformative. Basically, retirement and accepting my disability transformed my relationship with myself. It made me more aware of deeply held beliefs that were causing me suffering. Self-compassion and self-care became my new focus. The challenge was to accept that I was not equal to my accomplishments. That I have value and worth simply from being part of this common humanity. I read somewhere that retirement is like taking things apart before building something new. The process of taking things apart might include dismantling an office or giving away materials to younger peers, but it also includes dismantling of your attachments to false identities and false priorities. It is an opportunity for growth and freedom. I was a psychologist for over 25 years and I worked with families and children with severe mental illness and developmental disabilities. It was challenging, stressful, and very rewarding. Much of the time, I loved my career. I enjoyed the challenge, the creativity, and the relationships I developed. Most of all, I felt grateful that I had a career with such purpose, that I felt like I was making a difference in the lives of families. I was proud to be a psychologist. However, I felt vulnerable after experiencing significant trauma in my personal life. It became more difficult to carry the pain and suffering that I was witnessing. I began to consider making a change but was unclear what to do next. Before I had a chance to make a change, I had a severe trauma reaction to an interpersonal conflict with my boss. My therapist called it a “blended” reaction. This means that you are in a highly stressful situation that mirrors your earlier trauma. This resulted in a severe trauma reaction. I felt like a raw nerve and I couldn’t think clearly. I had problems with anxiety and depression before, but I had never been this sick and it was frightening. My therapist reassured me this was temporary, that my mental faculties would return with rest, but it was scary and felt like a permanent brain injury. Though I made some weak attempts at returning to my career, I quickly knew that I would never again work as a psychologist. I never want to get that sick again and I am not confident enough that I could continue and be effective. I was left to question what that meant for me and my future. I was fortunate and able to work out the financial implications much more quickly than the emotional outcome. I was left with painful questions that had no easy answer.  Was it worth it? Did I make a difference? Can I be proud of what I did? What does it mean for my identity if I am no longer a psychologist? I felt a deep sense of grief and loss that almost rivaled the loss of loved ones that I had also experienced at this time. Honestly, it took about as long to work through this grief, and I would be surprised if I don’t revisit this grief in the future just as I have done with the loss of my parents. It is a part of me. In this turmoil, I was forced to adjust my relationship with myself and to explore the expectations that I had of myself. I needed to identify and challenge a deeply held belief that my worth was a function of my accomplishments. That I only felt worthy when I was accomplishing things, writing articles, and helping others. It is very tenuous and fragile to base your self-worth on your accomplishments.  Humans are flawed creatures and sooner or later we all experience failure.  If our identity is based on our accomplishments, what does that mean when we fail? When we become so ill we can no longer produce?  Are we no longer worthy? As I unpacked my own trauma, I felt like a fraud for all the years that I operated as an “expert”.  While I was operating as an expert there was actually so much that I didn’t know about myself and my own trauma. I felt shattered. It has been about three years since my trauma reaction. I am grateful for the support I had from my loved ones and that I had access to good medical care. I am not the same person I was before my breakdown but I don’t feel like a raw nerve. Everyday I feel more grounded in the here and now, less burdened by intrusive thoughts of past trauma and my lost profession. I have more control over when I choose to visit these thoughts. Perhaps the most valuable part of this experience is the transformation that occurs in how I think about myself. I know on a deeper level that I am worthy of compassion and care irrespective of my accomplishments. That I am part of this common humanity filled with humans that all want the same thing-to be happy and to avoid suffering. We are all the same. This not only helped me feel better about saying goodbye to my career, it brought more grace and warmth to all of my relationships, particularly my with my young adult child. For others that may be experiencing losing a profession due to a mental health crisis, please know that you can feel better, sleep better, eat better, and think better. There is just an element of time that can’t be replaced. Just like the loss of a loved one, it is just something you need to go through and it takes time. I hope you have support from your loved ones and access to medical care like I have. It is an opportunity for growth and transformation if you are able and willing to entertain the idea of self-compassion. To broaden your idea of self-worth and connect with your common humanity. To find beauty and grace in your own flawed humanity.

    Community Voices

    Setting boundaries

    Anyone here with a mild brain injury or mild autism struggle with setting boundaries or standing up for yourself? Like feeling really defensive upset and knowing you need to stand up for yourself but suddenly becoming like mentally soft/weak because of your disability and like you “mentally dropped the ball”? Lol I don’t know how else to explain it… I guess I struggle with that and feel like my mind is “weak” sometimes … anyone can relate? Thanks 🙏😇
    #TraumaticBrainInjury #Autism

    Community Voices

    It's all just too much

    #TraumaticBrainInjury I got my first TBI 37 years ago. Had bad car accidents 6 & 8 years ago. People running stop signs.
    I have car PTSD and around DV.
    This past October I was assaulted by someone I was dating. I was on a vent for 3 days.
    Because of the lack of oxygen I now have Hypoxic brain injury. The first 5 months after were terrible. My brain is broken, anxiety and panic all day everyday.
    My brain was doing so much better. I was so proud of my self.
    Second week of May I was admitted to the hospital with septic pneumonia. Got three breathing tubes on the right side so that one was doing better.
    After 7 days I go home. Two weeks later back at the ER. Now it's the left lung which was a mess the first time I was there.
    So that ends up being two more times I was hypoxic.
    So TBI x2, PTSD, Hypoxia x3. I have had quite a set back brain wise. I'm angry, way confused, sad and really really tired. # brain injury, #PTSD , #CRPS , #DDD , #Fibro

    31 people are talking about this
    Community Voices

    Having a rough week

    <p>Having a rough week</p>
    12 people are talking about this