Transient Ischemic Attack

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    Rosario N
    Rosario N @rosarion
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    Exploring the Link Between Long-Haul COVID and Suicide

    One day, I messaged greetings to a friend who also has long-haul COVID, but I didn’t hear back from him immediately. It wasn’t until the next day when I recognized the familiar, friendly Facebook new message ping that I found in my inbox his messages, where he recounted to me his ordeal. He described how he experienced a TIA, or transient ischemic attack — also known as a mini stroke. His brother and step brother had to give him CPR while his family waited for an ambulance to arrive. But he didn’t recollect any of it. “I just don’t know how much more I can take,” he cried. His confession called me back to June 2021, when I was in my own fight against long-haul COVID symptoms, including struggling to breathe with San Antonio’s high molds, to which I had become severely allergic. Day after day, I battled with the environmental allergens and there was no reprieve in sight. I was doing everything I could to fend off any exposure to mold spores and my situation became so dire that I even covered my windows with cloth. My luxury apartment community was obsessed with landscaping the lush courtyard my balcony overlooked, and the maintenance team was diligent about cleaning the resort-inspired pool and removing debris and leaves daily, which, for me, meant more pollen particles floating nearby and worsening allergies. I often needed to retreat to the bathroom until the cleanup was complete. I had uttered the same words to my mother, I recalled, explaining to her that I was not being pessimistic about my illness; I was s-u-f-f-e-r-i-n-g. I am a resilient person and have already overcome multiple hardships in life, but this illness — this long-haul COVID monster — I simply could not defeat. It was ruthless and I was in agony, and no matter how hard I tried, I was losing the battle. Two days later, while still in the hospital for the mini stroke, my friend experienced for the first time a grand mal seizure, which he explained to me looks much like what you think of when you hear the word seizure: body shaking due to violent muscle contractions and a loss of consciousness. Grand mal seizures can be life threatening and, in fact, his body went into early sepsis, a state in which the body releases chemicals into the bloodstream to fight infection. I thought about how he said he’d already felt like giving up after the mini-stroke. He had survived the TIA and seizure, but these new developments would hinder any recovery progress. I also thought about the millions of other long-haulers across the world who may feel or have felt like giving up the fight, too. Some even had taken action. Long-Haul COVID and Suicidality In March 2021, Kent Taylor, the CEO of Texas Roadhouse, a major restaurant chain, died by suicide after struggling with long-haul COVID symptoms, including tinnitus. Another high-profile long-haul COVID death followed in June 2021 when the news media reported the suicide of Heidi Ferrer, a writer known for her work with the late 1990s TV show “Dawson’s Creek.” Her husband, Nick Guthe, shared that Ferrer had been struggling with long-haul COVID symptoms for 13 months. Guthe has since advocated for the research and treatment of long-haul COVID. On January 12, The Herald reported that a Scottish doctor and reproductive clinical researcher, Professor Fiona Denison, died by suicide, after battling long-haul COVID for two years. The deaths of Taylor, Ferrer and Denison have prompted discussion about the connection between long-haul COVID and suicide. Is suicidality a risk of long-haul COVID? Researchers are now beginning to study the mental health of patients who have recovered from COVID-19 and those living with long-haul COVID. An expert psychiatrist associated with the James J. Peters Veterans’ Administration Medical Center, Columbia University College of Physicians and Surgeons and Mount Sinai Icahn School of Medicine, estimates those with long-haul COVID are at an increased risk for suicidality due to the brain inflammation damage associated with the virus as well as symptoms from its psychiatric, neurological and physical effects. The American Psychological Society considers suicidality to be “the risk of suicide, usually indicated by suicidal ideation or intent, especially as evident in the presence of a well-elaborated suicidal plan.” In fact, patient-led and academic research published in The Lancet named suicidality as a long-haul COVID symptom that warrants more research, recognizing that it has largely been omitted from discussions. Later when I asked my friend why he contemplated death, he touched upon some of the themes I echoed and witnessed daily among long-haulers in online support groups or on Twitter. Long-haulers are screaming from the tops of our damaged lungs in an effort not only to warn others that long-haul COVID is a risk, but to cry for more research, funding, treatment options, and social support protections and services. “I’m tired of being isolated.” The isolation associated with long-haul COVID comes in all forms. In some cases, those who are living with long COVID may isolate from friends and loved ones because we are too unwell to interact, or conversations — face-to-face or even those over text — may be too taxing. Additionally, we may isolate to protect ourselves from contracting the latest COVID-19 variants, as we do not want to make our situations worse, or even fatal. Even more, others may stay away from us for fear that we are contagious or shy away because they do not want to face their own vulnerability. “I’m tired of flare-ups with no explanation.” The unknown can be maddening and terrifying, and there are many aspects of long-haul COVID that remain inexplicable. “Nothing is more frightening than a fear you cannot name,” wrote Cornelia Funke, young adult fiction author. While patients have named long-haul COVID, the many symptoms and illnesses associated with it are not defined. There is yet to be a map for how to navigate this virus and overcome it. In the meantime, patients are relegated to monitoring and troubleshooting symptoms without an overall understanding of the virus. “I can’t [believe] how the medical community doesn’t give a f***.” The patient experiences of those seeking diagnoses or treatment for long-haul COVID can range from the supportive and validating to the horrific and contested. As patients who are managing through long-term, debilitating illness, we cannot fathom how the medical community has remained disjointed — even broken— while millions of people living with long-haul COVID continue to suffer. We understand that doctors and nurses are humans, too, as The Atlantic writer Ed Yong’s recent article on the mass exodus of healthcare workers in the U.S. reminds us. But add in the motives of governments, insurance companies, the pharmaceutical industry, corporations and schools — and it results in a global healthcare breakdown. Yet hope is dwindling and our patience is expiring. “I’m tired of the [world] not taking this s*** seriously.” While COVID-19 and long-haul COVID continue to be widely politicized in the media and on platforms like Twitter and Facebook, the debates about masking, schooling, and workplace standards continue. It is distressing for long-haulers to sit on the figurative sidelines and watch the debates ensue. Some able-bodied individuals don’t want to wear masks. Others don’t believe COVID-19 is real. Meanwhile, long-haulers are screaming from the tops of our damaged lungs in an effort not only to warn others that long-haul COVID is a risk, but to cry for more research, funding, treatment options, and social support protections and services. HELP US. “I’m tired of no longer being human.” This final protest is probably the most difficult. Personally, I am two years into this illness and as the months roll on, I am coming to understand that transitioning to a life with chronic illness is accompanied by innumerable losses — partners or spouses, friends, employment or school, money, homes, goals, dreams, and hobbies. These losses are on top of physical abilities that have diminished too. It has been the sorrow of my life to say goodbye to important parts of my identity and to enter a realm — possibly for the rest of my life — of subsistence rather than existence. Perhaps it would be more bearable if we knew help was on the way. Alas, we don’t know if it is. Suicidality and Chronic Illness Research and advocacy group Body Politic reminded the public that suicidality and depression are not uncommon in people living with chronic illness, offering an explanation of why this change in the mind occurs. In response to Taylor’s death in 2021, the group published the following statement: “Like many issues long COVID patients face, suicidal ideation and depression are not unique to the experience of having Covid-19. People living with chronic illnesses of all types are twice as likely to experience depression and anxiety than the general population. Chronically ill young people aged 15–30 are three times more likely than their peers to attempt suicide. No matter what stage in life a person becomes chronically ill, the sudden changes to our physical bodies, our social lives, and our imagined futures can be difficult to face.” My friend is back home now, and following up with doctors about his prognosis, while my own doctor has issued me two more diagnoses. The outlook, whether positive or dismal, is one that we grapple with every day. There is no doubt it’s useful to know that some people living with long-haul COVID are more at risk for suicidality for many reasons. Even more, this fact underscores why it is important — no, it is a matter of life or death — that our global communities do not leave long-haul COVID patients isolated and in the darkness, but that we do everything in our power to be a guiding light.—— If you are in the U.S. and are in crisis and having thoughts about harming yourself or another, please call the National Suicide Prevention Lifeline at (800) 273-TALK (8255). The lifeline also offers online chat support, 24 hours a day, seven times a week. If you are located outside the U.S., please share your country’s resources in the comments.

    Sundance Film Festival Shines the Spotlight on Disability Authenticity

    With one-in-five people having a disability in the U.S. today, the lack of representation – just 2.3 percent of characters in the 100 top-grossing films of 2019 and 8 percent in family films – means that millions of people are unable to see themselves reflected in media. The 2022 Sundance Film Festival (January 20 – 30) will provide an opportunity for audiences with various disabilities to see themselves represented – all from the comfort of their homes through the virtual festival site. This year, several films feature disability in the plot, including “892,” “75,000,” “Cha Cha Real Smooth,” “Chilly and Milly,” “I Didn’t See You There,” and “Sharp Stick,” among others. Ensuring an Accessible Festival The 2022 Sundance Film Festival being virtual this year also brings a desire to be accessible to all. According to Sundance, all films will be available with closed captioning on every English language feature film and short or subtitles on non-English films, which allows viewers who are Deaf or Hard of Hearing to view films. In addition, the New Frontier Spaceship includes closed captioning and text chat features. All premiere screening Q&A’s, along with most of the Beyond Film program of panels and events, will include ASL interpretation. In addition, 11 feature-length films and two shorts include audio description (AD) for blind and low-vision viewers. Most importantly, the programmers have said they will conduct ongoing accessibility audits of all Sundance-hosted online venues and events throughout the festival. In addition, the festival has provided a way for anyone to request an accommodation or offer feedback. To offer feedback, please contact the accessibility team at accessibility@sundance.org or the accessibility hotline, 435-776-7790. Below please find a guide to several of the films featuring disability in the plot or talent with disabilities. Feature (U.S. Dramatic Competition): “Cha Cha Real Smooth” (Director and Screenwriter: Cooper Raiff) – Premieres January 23, 1:45 p.m. PT From writer-director and actor Cooper Raiff comes the story of a New Jersey party starter, Andrew, working the Bar Mitzvah circuit after college who meets his match in a suburban mother Domino (Dakota Johnson), then begins sitting for her autistic daughter Lola (Vanessa Burghardt), bringing him closer to their family. Newcomer Vanessa Burghardt, who is autistic herself, plays Lola. RespectAbility team members provided consulting services on Burghardt’s role in this film. Feature (U.S. Documentary Competition): “I Didn’t See You There” (Director: Reid Davenport) – Premieres January 24, 10:45 a.m. PT Spurred by the spectacle of a circus tent that goes up outside his Oakland apartment, a disabled filmmaker launches into an unflinching meditation on freakdom, (in)visibility, and the pursuit of individual agency. Feature (Premieres): “Sharp Stick” (Director and Screenwriter: Lena Dunham) – Premieres January 22, 5:30 p.m. PT Sensitive and naive 26-year-old Sarah Jo lives in a Los Angeles apartment complex with her influencer sister and her disillusioned mother. She is also a wonderful caregiver to Zach, a child with an intellectual disability. Eager to lose her virginity, Sarah Jo embarks on an exhilarating affair with Zach’s father, Josh. In the wake of the doomed relationship, Sarah Jo grapples with heartbreak by dedicating herself to unlocking every aspect of the sexual experience that she feels she’s missed out on for so long. Feature (U.S. Dramatic Competition): “892” (Director and Screenwriter: Abi Damaris Corbin) – Premieres January 21, 10:30 a.m. PT When Brian Brown-Easley’s disability check fails to materialize from Veterans Affairs, he finds himself on the brink of homelessness and breaking his daughter’s heart. With no other options, he walks into a Wells Fargo Bank and says, “I’ve got a bomb.” As police, media, and family members descend on the bank and Brian, it becomes clear he’s not after money — he wants to tell his story and have what is rightfully his, even if it costs him his life. Feature (U.S. Dramatic Competition): “Dual” (Director and Screenwriter: Riley Stearns) – Premieres January 22, 5:00 p.m. PT After receiving a terminal diagnosis, Sarah commissions a clone of herself to ease the loss for her friends and family. When she makes a miraculous recovery, her attempt to have her clone decommissioned fails, and leads to a court-mandated duel to the death. Feature (Premieres): “Living” (Director: Oliver Hermanus) – Premieres January 21, 11:00 am PT In 1952 London, veteran civil servant Williams has become a small cog in the bureaucracy of rebuilding England post-WWII. As endless paperwork piles up on his desk, he learns he has a fatal illness. Thus begins his quest to find some meaning in his life before it slips away. Documentary Short: “75,000” (Director and Screenwriter: Moïse Togo) – Available On-Demand with a pass throughout the entire festival Highlighting the biological aspect of albinism, 75,000 focuses on the genetic and hereditary abnormality that affects not only pigmentation but the physical and moral conditions of people living with albinism. Documentary Short: “Chilly and Milly” (Director: William David Caballero) – Available On-Demand with a pass throughout the entire festival Exploring the director’s father’s chronic health problems, as a diabetic with kidney failure, and his mother’s role as his eternal caretaker, Chilly and Milly is a combination of 3D-modeled/composited characters, with cinéma vérité scenes from an autobiographical documentary shot over 13 years ago. Midnight Short: “Appendage” (Director and Screenwriter: Anna Zlokovic) – Available On-Demand with a pass throughout the entire festival A young fashion designer must make the best of it when her anxiety and self-doubt physically manifest into something horrific. Talent With Disabilities When successful actors and producers disclose a nonvisible disability, such as a learning disability or mental health condition, they help normalize these disabilities in both the entertainment world and for the general public who consume their films and television shows. In some cases, actors with disabilities appear in films that do not necessarily have disability in the plot. In several of these instances, actors with disabilities are playing roles that have nothing to do with their disability. “After Yang” features an actor with insomnia and who has dealt with addiction, Colin Farrell. “Alice” features an actor who has anxiety, depression, and polycystic ovary syndrome, Keke Palmer. “AM I OK?” features an actor who had breast cancer, Tig Notaro, and an actor who had a burst intestine, Sean Hayes. “Cha Cha Real Smooth” features an autistic actress, Vanessa Burghardt. “Emily the Criminal” features Aubrey Plaza, who had a stroke when she was 20 years old that caused temporary paralysis and expressive aphasia. A couple of years later, she had a transient ischemic attack while on the set of “Parks and Recreation.” “F^¢K ‘€M R!GHT B@¢K” includes disabled actress Emily Kranking, who has cerebral palsy. “Nothing Compares” features Sinead O’Connor, who has mental health disabilities. “Sharp Stick” features a writer/director and actor with Ehlers-Danlos syndrome and OCD, Lena Dunham, as well as two disabled actors, including one with Down syndrome and one with cerebral palsy. “The Worst Person in the World” features an actor with PTSD, Renate Reinsve. The plot also involves cancer and pregnancy. Additional research provided by Eric Ascher.

    Community Voices

    Survivor Not a Victim

    I just watched the movie “Joker” and at one point he writes “the worst part of having a mental illness is people expect you to behave as if you don’t” – I mean this is so incredibly on point. The world is not built for those of us with mental illness. You cannot tell from the outside that someone suffers from these illnesses because we’re not supposed to act like it and if we do, we’re portrayed as lazy or selfish and cannot justify our actions because talking about mental illness is “taboo.” It’s a god damn no win situation. It’s not just a situation though, it is millions upon millions of people’s lives. It’s hard to love people with a mental illness because it’s hard for them to trust that love, especially those with trauma or abandonment issues. They need constant validation and reassurance. In my case, I suffer from Borderline Personality Disorder so these characteristics are very strong in me. This is why it’s hard for people with Borderline Personality Disorder to keep relationship. It is exhausting to be with me. To be fair, it is more exhausting being me. I find it hard to move past the self pity at times. I’m constantly angered by my circumstances. Why me? Here is my story…

    I was diagnosed with ADHD in the first grade. That was when I first had the idea that something was wrong with me. I also had to be tutored the summer after first grade to learn how to read because I didn’t pick it up as quickly. I was in resource classes in second grade and the way they herded the resource kids together by calling us out of our regular classes was just pure evil. It was like putting a label on our forehead for everyone to judge. But no one judged me more than I did. This is where I got the idea I was dumb, that I was a bad kid because it was hard to sit still and be quiet. I began to experience symptoms of Bipolar Disorder around 15-16 years old. It was like a switch in my brain. I refer to it in my head as the feeling of not caring anymore. I was sick of trying so hard to be what everyone wanted me to be so I just started doing the opposite. I realize now that this sense of exhilaration and reacting without consequence was textbook impulsive manic behavior. My depression was characterized by excessive sleeping. I can remember my mom physically dragging me by my feet attempting to pull me off of my bed to go to school. I didn’t care about her concerns. I didn’t care about the implications of missing school. I didn’t care about anything. I just wanted to turn it off. That’s the thing about Bipolar Disorder, the higher the highs, the lower the lows. I eventually ran away briefly to escape the shame I was constantly subjected to by my parents (mostly my mother because my father was always in the background). They had my brother to make them proud. They didn’t need me. I was about to find out they were concerned more than I knew and were about to make a decision that would change my life forever.

    My parent’s decision to send me away wasn’t based on any thoughts of my mental illness. That wasn’t really discussed in the 90’s. This was a decision based on the assumption I just had behavioral issues. That I needed to go somewhere to “make me better.” Or at least that’s what my dad said to me as I was being escorted to a van by complete strangers in October of 2000. I don’t remember much of the trip, but I do remember we had an overnight layover somewhere so we had to stay in a hotel. Again, I’m with complete strangers (a husband and wife team) and we were in a room with two beds, one of which they pushed against the door so I couldn’t escape in the middle of the night. They weren’t supposed to, but they let me call my parents. I don’t remember exactly what was said but I remember being hysterical, asking them if they were really doing this to me. Telling them I swore I would be a good kid and do exactly what they wanted me to if they would bring me back home. I don’t even remember the response, but clearly it was a no because the following day I arrived in Thompson Falls Montana to a behavioral modification school named Spring Creek Lodge. I arrived at night and I did “intake” in a trailer at the bottom of campus. Again, my memory is very fuzzy, but I remember having to get naked. They took my underwear because it was a thong which was contraband. They took my shoelaces. It was something like 0-10 degrees outside with snow on the ground and the only jacket I had was an old ski jacket from 8th grade that my parents had packed for me. Now the next part of my memory is played in my brain as if I’m in the room watching myself walk in. I can’t remember what I saw when I walked into the room, but I can see myself walk in wearing jeans and a pink sweater and sketchers without laces. My hair was stringy from washing it without being able to blow dry it. I was a zombie. I wanted nothing to do with any of them. I was not like them. Truth is, I didn’t know who I was. I can remember little things here and there. We would wake up super early and have a specific amount of time to get out of bed and make our beds. They had to be made perfectly with nothing hanging down or we’d get a consequence. Our showers had to be less than 5 minutes. We couldn’t talk in the bathroom or to anyone in another room. You had to both be in the same room to converse. But you could only talk to certain levels. Like if you’re a level 1, you can only talk to level 3s or something like that. You could only wear a certain number of layers due to being a “run risk” so even though it was usually anywhere from -10 to 10 degrees outside in the winter, we could only have 2 layers on while we walked in a heal toe line from our cabins to the cafeteria or the classroom, etc. They encouraged you to make your peers accountable by referring them for consequences. If staff sees a kid breaking a rule and knows you saw it too, they would wait for you to refer them and if you didn’t, you’d both get consequences which affect your level, which affects the time it takes to graduate and go home. So eventually you are just paranoid and referring friends for consequences and kids were getting their levels taken from them to be taught a lesson. Then there were challenges like being put on silence, sometimes for days, weeks even months at a time. That means you couldn’t talk nor could anyone else talk to or even acknowledge you. This was a challenge I was put on quite frequently because I was constantly being accused of being an attention suck and being loud and acting out for a reaction. Let me remind you, I was just 17 years old. This type of treatment is torture for a developing mind. To this day I am triggered by being “shushed” or being told to be quiet. There were other challenges involving physical labor and humiliation but the real kicker were the seminars.

    Let me preface this with you cannot get to higher levels and graduate without successfully completing seminars. The first one was Discovery. I can’t remember how long I had been there before I had to go to my first seminar, but it was terrifying. My memory is very blurry here, but I can remember being in a group of my peers with the junior staff (fellow program kids on the higher levels) and regular staff and a facilitator and them asking me what is the worst thing that had ever happened to me. The first thing that came to mind was being sexually assaulted by a Citadel Cadet at age 15. He did not vaginally rape me, but I was forced to perform a sex act on him. They did not believe that was the extent of my assault. They called me a liar. Told me to “choose out” of the seminar and think about the terrible thing that actually happened to me and come back next time. Well, that was the worst thing that had happened to me, which I later realized is awful in its own right, but since it wasn’t enough, I would be prepared next time. The next time came around and I had prepared a detailed, horrific rape story to tell them. I was made to bang a towel wrapped in duct tape on the floor, screaming at my rapist. There was a junior staff boy yelling in my face calling me a dirty whore and a slut and at one point one of them pushed a pillow against me simulating the pressure of my rapist while I continued to yell at them that I was worthy and that I was not dirty and I was not a slut. I left that seminar changed forever. I spent the rest of the program retelling that story over and over again to where I even believed it myself. I even had therapy where I retold this story for 10 years before I came to terms with that not being my truth. I left that seminar broken. So broken. What they try to do is break you down so that they can build you up to be the cookie cutter version of yourself that your parents always wanted you to be. To take accountability for why things happened to you. I even took responsibility for my own “rape.” “How did you create this for yourself” was a common program question. There was more of the same terrible attack therapy and psychological trauma throughout the 9 months I was there. By the time I went home, I was so brainwashed that when I began to inevitably experience signs of my mood disorder, I thought it was all my fault.

    By the time I was in my sophomore year of college, I could no longer fend off my Bipolar Disorder. But I had no idea what this was. In my mind I was lazy. I was dumb. I was irresponsible. I began exhibiting impulsive behavior followed by debilitating depression again. Due to the program, I blamed myself more than the average person with mental illness because I was brain washed to believe that I created everything that happened to me. I spent the next 15 years going through cycles. I would have a good job, great friends, relationship, but then I would have a mental breakdown consisting of promiscuous behavior, excessive spending, heavy partying followed by severe depression. I would go ballistic on those closest to me. If they said anything remotely negative about my way of life, I would flip a switch and push them right out of my life even though they were simply showing concern.

    The worst example of my sabotaging relationship was when my best friend since high school, La, finally had enough. She was tired of being my punching bag and threw in the towel. That was one of the most destructive downward spirals I’ve ever gone through. All around that time I lost my job, had an affair with a married man, got evicted and then I found out La’s mother was dying. I will never forget that when I found out I was at my surprise 30th birthday party and my friend, Christina told me the news. I proceeded to text La (pretending I didn’t know) to see if she was coming to my party. I wanted her to be my friend again more than I was concerned about her mother and her own emotional state. I realize now that was delusional thinking and an impulsive response. I try not to guilt myself, but this continues to be one of the hardest things to forgive myself for. This wasn’t the only time I had pushed someone away. I have ruined relationship in dramatic and grandiose ways throughout my life by simply being a human bulldozer, but this one hurt the most. Probably for both of us if I had to guess. She could have really used my support during this time, but I have tried time and again to reassure myself that I, too, was sick and did not have the capacity to be there for anyone else.

    Off and on throughout my twenties, I was in an extremely toxic and abusive relationship. I still blame myself for starting the fights and being equally abusive, but I then remind myself that I was completely helpless when my abuser stomped my face into the bathroom tile floor of a hotel in Hilton Head and I consequently ran to the front office in my underwear to escape from him. I am easily triggered by men if they get impatient with me as I am easily triggered and become fearful.

    I have been “date raped” more times than I’d like to admit. I put it in quotation marks as it is still hard for me to not take responsibility for that as it was my choice to get blackout drunk and put myself in situations to be taken advantage of. On top of that I was highly sexual due to my frequent manic states so it’s hard for me to decipher what was consensual and what was not. I could want to be with a man one moment and the next be in the fetal position crying. That’s a confusing time for me.

    It wasn’t until I was 32 that I was diagnosed with Borderline Personality Disorder which was developed by never forming a bond with my father as a child and then sexual assault later from men throughout my life starting at age 15. At this time I was also diagnosed with PTSD from my time at the cult like program and Bipolar Disorder. This was a tough pill to swallow, but once I finally accepted it, I was on my way to starting over in a new career and a new lease on life. I had a few hiccups along the way though. At 33, I had a Transient Ischemic Attack which is commonly referred to as a mini stroke due to high blood pressure. That was traumatic and definitely flipped something in my brain as my emotions got even more heightened and coming from someone with Bipolar Disorder, that is terrifying. I feel like crying at the drop of a hat, but I’ve learned to live with that.

    On Easter of 2019, I went to celebrate Easter with my dad and his wife and my brother and his family. I smiled all day and played with the kids as I love to do. Later that evening, I went home, took about 30 Ativan, flushed it down with a bottle of Champagne and went to sleep with every intention of never waking up again. A little background, it doesn’t take someone with mental illness like mine to lose hope. I used to frequently just wish I were dead. Life is too hard and sometimes I get tired of working so much fucking harder than the rest of the world just to be a little stable. I was alone and getting older and that is terrifying and I didn’t see a way out at the time. Anyway, I woke up with the curtain rod on the bathroom floor, a bedroom table flipped on its side in the den, bruises up and down my body with no recollection of the night and my phone was ringing. It was late morning on a Monday and my boss and coworker who happen to be two of my best friends and biggest supporters, had called my mom and HR rep and were trying to get a hold of me. I didn’t tell my mom at first I had tried to commit suicide. I just told her I took some pills because I was depressed. I didn’t want to be committed. However, I did eventually fess up and checked in to an outpatient mental illness treatment center. It was there where I met my sister, Arianna. She is one of the reasons I am still here and writing about this right now. She is exactly like me when I was her age (21 at the time). I have been able to do so much healing through mentoring her and she has been just as inspirational and supportive to me. This time around, I knew it had to be different. This wasn’t going to be just another point in my vicious cycles. That was it. That was the last rock bottom. I had someone who depended on me. Someone I needed to be alive for. I finally started seeing a therapist that scares the shit out of me but it’s because he makes me uncomfortable and try new things. I even thought I fell in love with him at one point (I still struggle with these feelings) but it’s because of my severe issues with male attention and a lot of projecting on him. He has helped me with my illogical thoughts and helped me learn how to live my life day to day as well as to look ahead and see a future and to live for my passions.

    Which brings me to my last point. I am passionate about removing the stigma of mental illness. I am passionate about advocating for teenagers’ rights and for their parents to understand the signs of mental illness and the best ways to find resources and communicate with their sick kids. I’m passionate about mentoring those who are new survivors from the troubled teen industry. These programs leave us broken down and then nobody understands us or what we’re going through because we don’t even know. We have so many triggers and illogical thoughts that we’re afraid to share because for so long we had to watch what we said for fear of being made to do a challenge or being called a liar or being humiliated. So much of my issues stem from this program, but I am equally troubled by my mental illnesses. The only way I can see a future for myself is if I can be a beacon of hope for others. If I can help one person see a single path outside of suicide, my life will have meant something. If I can stop one parent from sending their child to one of these programs, my existence would be meaningful. If I can get anyone else to join me and come out and speak about their mental illness with me and join me in this battle against mental illness stigma, I will know why I am a suicide survivor and no longer a victim.

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    Community Voices
    albee

    To people who tell me I'm too young: I know!

    I like to joke a lot about my age and say that I'm an old man trapped inside of the body of a young man trapped inside the body of an old man (joke stolen from my brother). I'm 21 and walk with a cane due to fibromyalgia and hip hypermobility. I have a variety of health problems including ovarian cysts, IBS, chronic fatigue - oh yeah, and I just had a #TransientIschemicAttack (otherwise known as a "mini stroke). As I recover and regain my composure I have family member after family member tell me I am too young for all these health problems, to which I say "I know!!!" Yes, I am dealing with many problems for my age and problems most commonly dealt with by older people. But that doesnt change my diagnoses and it doesnt magically make me better. It just makes me embarrased to be suffering in the "wrong way". Yes, I'm young. Be a shoulder to lean on, not a critic. #ChronicIllness

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    Community Voices
    Community Voices

    My 30 Year Journey to a Diagnosis

    I’ve known I was Hypermobile since I was about 10 years old, as my right knee bends in, and so does my left ankle, and apparently my GP when I was younger just said “Oh yes, she’s Hypermobile”. I noticed during sports that I had problems with my joints “giving way” and when I started ballet in my teens, the teacher used to shout at me to get me to stop “rolling your ankle in”! Of course, I had no control over it. I had a stress fracture of my foot once during class, but I didn’t do anything much to bring it on. Also my lower back used to regularly “go” during class, and then this affected my Sciatic Nerve, which is unbelievably painful, but I didn’t know why this was happening, as I’d never actually injured my back. I was always very fit when younger, my school friends used to catch the school bus, and I’d either jog or cycle on my racing bike to school. Also, I had been horse-riding since I was 11 years old, so my leg muscles were very strong; little did I know, doing all these sports was the best thing to help my Hypermobile joints, as keeping fit strengthens your core stability and it saved me from many more problems that I would have had if it hadn’t been for my love of keeping fit.

    But even though I kept fit, I did notice that I used to get much more tired than my friends did, so I had to go to bed very early, I was often unwell, I used to get large bruises, even when I didn’t really do anything to cause them, I used to find it hard to hold a pen at school for more than a few minutes, I had problems finding shoes that didn’t give me huge blisters as my skin seemed so soft, I could never wear heals as my ankles just used to “go” so easily, so I just used to wear high-tops trainers all the time. I also used to love horse-riding, but the few times I didn’t wear riding gloves, the reins that took layers of skin off my fingers, which took weeks to heal. Another symptom I had were severe nosebleeds, but this was another symptom that no-one could explain. And I also used to get dreadful Hayfever, and I had multiple food sensitivity, and dreadful migraines, and I never knew why it was all so bad.

    Then at 15 years old I started getting a severe upset stomach; everything I ate went straight through me and I went from a healthy 10 stone 10lb to under 7 stone; I looked like a walking skeleton and was told by a doctor “if you don’t start eating in 2 weeks you’ll be dead”: He accused me of being Anorexic to “get out of doing my GCSEs”, but this didn’t make sense to anyone because I was an A Grade Student wanting to be a Doctor since I was 11 years old. Thankfully my GP knew I wasn’t Anorexic, and he put me on an exclusion diet, which helped, and I put the weight back on and got better, but it took years, and I never got an explanation for why it had happened. I had to leave school early, I lost all my friends, and I have to give up my sports and horse-riding as I was too weak to continue with it all.

    It took until I was about 18 to recover from this, and so then I went back to college to try and get my GCSEs. But, my health was still very up and down, and I only managed to take 2 more GCSEs as I missed so many lessons, and so I left college when I was 21, and started working part-time in a health food store. Even though I wasn’t well enough to study full-time for a medical degree, the health food store sold Homeopathy and Herbal remedies, so at least I felt like I was still able to offer help to customers who needed some medical advice, as the shop offered full training to be able to sell these products. A year after, when I was 22, I met my future husband. We had our first child, when I was 25, and although I still had “off days”, I just learned to live with feeling “not very well” most of the time. At age 28, I became pregnant with our 2nd child, but this time around I was very unwell during the pregnancy; I had terrible morning sickness, all day, every day, called #HyperemesisGravidarum and I lost over a stone in weight and so I was admitted to hospital for IV fluids and anti-sickness injections. I also had Symphysis Pubis Dysfunction; my pelvis opened up at only 4 months pregnant, something which should only happen during birth, and it left me in a wheelchair for a year as I was in so much pain if I tried to walk. I know now, that it was caused by Hypermobility. I didn’t get it during my son’s pregnancy as it is worse when you’re pregnant with girls due to the extra Oestrogen hormones, realising extra of the hormone Relaxin during pregnancy. I also had dreadful Carpel Tunnel syndrome, and could barely use my wrist during the pregnancy. The troubled pregnancy also brought on #ThyroidDisease, and I developed an Underactive Thyroid and I was told many of my symptoms were due to my thyroid condition, and also I didn’t react too well to the medication for it, which didn’t help matters, but even when I was put on a different medication that helped me, I still had many ongoing symptoms and all my symptoms, that I’d had since my teenage years, just got worse after this pregnancy.

    I also had a lot of problems with my teeth for years, but even more so after I had my second child. My gums bleed every single time I cleaned my teeth, even when I used the softest toothbrush. I had to have 6 teeth capped as they used to break very easily. I became really nervous of dental visits, as anaesthetics didn’t work well at all, even when one dentist gave up to 6 injections; again, this was something else that I never understood. Also my jaw dislocated twice, and used to make a loud crack if I ate something extra chewy, I haven’t bitten into a apple since I was a child! And I also had to be very careful when I yawned to prevent it happening again.

    Over the next few years I also had a few episodes where my speech was affected and I couldn’t think straight and my memory became very bad, at the hospital I was told it was probably a TIA (#TransientIschemicAttack) brought on my migraines, or stress, but I wasn’t stressed and I didn’t have a #Migraine at the time. I later found out these episodes were called “Brain Fog”, but I’d never heard of that at the time.

    Then one morning out of the blue, I went completely deaf in one ear, and when I tried to get up out of bed, I couldn’t coordinate my legs, so I couldn’t walk. I thought I’d had a #Stroke, and an ambulance was called because I couldn’t move properly. In hospital it was told it was severe Vertigo, and I was given medication for it that worked, but I had symptoms for many months afterwards. Again, no-one could tell me why I had suddenly developed it or why it was so bad.

    And then I became even worse at the beginning of 2012, and my IBS was so bad I lost 4 stone in weight (just as I did when I was 15). I had to be put on a liquid diet and have no solid food for 9 months to help. After many tests and a Bowel Cancer scare, and a #CrohnsDisease scare, I was told it was simply IBS, but that they’d never seen it so bad, but, again, the doctors couldn’t explain why my IBS had suddenly become so bad again. I asked if it could be linked to my hypermobility, as I had noticed that when my joints were extra painful, my bowel problems were worse too, but the consultant said “no, I’ve never heard of that”.

    Then a few months later I was admitted to hospital and had a Lumbar Puncture for suspected #Meningitis, as I had such a severe #Headache. I often get very severe headache and migraines, and a pressure at the base of my skull, but this one was particularly bad. After the Lumbar Puncture I had a Tonic Clonic Seizure and had to be put on a Ventilator, and I spent 3 days in Intensive Care. Yet no cause was ever found for the seizure, and I didn’t have Meningitis, but I got no explanation as to why my pain was so bad at times or what the pressure at the base of my skull was caused by, so I was discharged from hospital yet again, not knowing why I and so many ongoing symptoms. In 2013, and desperate for answers, I paid to have a complete check-up at Harley Street, and they discovered that I had a Heart Murmur as my Mitral Valve didn’t close properly, it was overlapping when it was closing. Later, I also found out that this is quite common in Hypermobility, but again, no-one mentioned that at the time. So, I had many symptoms, that didn’t seem to “fit” with anything, and I was always left wondering what was going on, and I had just accepted that a lot of it was “just me”. Exercise, or any physical activity was now making me feel much worse, I was getting more and more fatigued and I was sleeping all the time, but yet still feeling exhausted.

    In November 2014 I was told I had M.E. and I was so glad to get an explanation for my symptoms at last, because I just knew that all my symptoms couldn’t just be down to my thyroid disease, and I felt that the doctors were just blaming my thyroid disease as that was the main condition that I already had a definite diagnosis for. But after an appointment with the M.E. clinic, I was told I had Tachycardia when upright, and I did have chronic tiredness, but the specialist told me it wasn’t M.E. after all, and I felt like I was back at square one again.

    At the start of 2015 I became worse than ever, I started collapsing when I stood up, and my joint pain was worse; my wrists were very painful, my hips “popped”, my back, knees, ankles were all so painful that is really affected my walking, and it all got now so bad, I had to buy a wheelchair just as I turned 41. After noticing that the reason I collapsed was because my heart was racing when I stood up, I bought a blood pressure and pulse monitor, and started recording my heart rate. Sure enough, my heart went from about 70 up to 150 just from standing up. I researched my symptoms and I found out about a condition called PoTS (Postural Tachycardia Syndrome) that fitted with some the symptoms I was suffering from. So then I put “PoTS and Hypermobility” into Google and it came up with the condition: “Hypermobility Type III #EhlersDanlosSyndrome“, and I said out loud at the computer screen THIS IS ME!! At last all my symptoms fitted! I researched EDS online and I also joined some groups on Facebook for information and support, and found that my story, and lack of diagnosis, was unfortunately not unusual. So, armed with my research and photos that I’d taken of the blood pressure monitor to show what my heart rate did when I stood up, I asked my GP to be referred to an EDS Rheumatology Specialist and I couldn’t wait to see a Doctor that knew about this condition at long last.

    I saw the Rheumatology Consultant and he confirmed that I definitely have EDS Type 3, and he said it was an extreme case. At last, after 30 years of symptoms, on and off, I had my full diagnosis; the relief was like a weight off my shoulders, I actually physically felt lighter when I left the hospital. I had a load of blood tests, and I was x-rayed from top to toe, we were at the hospital nearly 3 hours. I was told my gastro problems were in fact caused by #Gastroparesis, which explains why I had so many problems tolerating solid food, so it wasn’t just IBS after all, and he sent me to a Gastroenterologist to confirm this diagnosis. I was also sent to a Cardiologist, to be put on some treatment for my PoTS. I was holding back tears during most of the appointment, and when I left him, I said; “Thank you doesn’t even begin to cover it”!

    I just so wish I had been diagnosed when I was in my teens, then I could have got the help, treatment and understanding that I so desperately needed all these years, not just from the medical profession, but from doubting friends and family members too, as when you live with an invisible condition, doubt unfortunately follows you wherever you go, and this is one of the most heart-breaking things to go along with an #Undiagnosed condition. I would have loved to have followed my dream of becoming a doctor, as I still love science and medicine to this day, and I’ve never wanted to do anything else as a career, but my body sadly let’s me down. But, at least I know now what it is, and that all my symptoms were part of one condition. I was diagnosed in 2015, and 3 years later, I have had many hospital appointments and admissions, and I will continue to need hospital care, but at least now, we know what we’ve dealing with.

    Community Voices

    How to Lead the Stroke Survivors to the Fast Recovery

    #Stroke that affects the arteries within and leading to the brain is one of the deadliest diseases in the world. In the USA, it’s the leading cause of #Disability and the fifth cause of death.

    When does stroke occurs? It does when an artery transporting oxygen and nutrients to one’s brain is blocked by a blood clot or is ruptured.

    Stroke Statistics

    In the US, more than 140,000 people die from it annually. It is also the leading cause of long-term or serious disability.

    Annually, about 795,000 people suffer from stroke, with 185,000 suffering from recurrent strokes and about 600,000 from first attacks.

    About ¼ of sufferers are those under 65 years of age.

    Someone in the US is having a every 40 seconds.

    The most important risk factor for is high blood pressure.

    Source: U.S. Centers for Disease Control and Prevention

    Signs of Stroke

    Check out the following for the signs and symptoms of so that you can act immediately or save someone’s life aside from your own.

    Trouble speaking, sudden confusion and trouble understanding speech

    Trouble seeing in both or one eye

    Sudden severe #Headache with an unknown cause

    Dizziness, lack of coordination, loss of balance and sudden trouble walking

    Weakness or numbness in the face, leg or arm, especially on one side of the body

    Types of

    There are certain types of strokes, each with a particular treatment approach, which depends on several factors, including how long it lasted and type of it was. The sooner the treatment the better and sooner recovery the patient will have. Learn more in the following.

    Ischemic (Clots): It occurs when a blood vessel that supplies nutrients and oxygen to the brain is blocked. This type accounts for 87% of strokes.

    The main treatment approach to this type is on restoring enough blood flow to the brain. However, treatments may vary according to how quickly the patient can get to a hospital or his/her medical history.

    The doctor may recommend a tissue plasminogen activator if he/she seeks treatment within the first three hours of the attack. It works by dissolving the clot.

    On the other hand, the doctor may also use procedures to deliver clot-busting medications to the brain or manually remove the clot.

    Hemorrhagic (Bleeds): This happens when a weakened blood vessel ruptures. Its most common cause is an uncontrolled high blood pressure. For the two types of weakened blood vessels causing it are arteriovenous malformations and aneurysms.

    The focus of treatment is on regulating the bleeding and reducing brain pressure.

    It main purpose is to stop brain bleeding and reduce its side effects that include an increased cranial pressure.

    On the other hand, some surgeries can also involve coiling and clipping, which aims at preventing the blood vessel from further bleeding.

    TIA (#TransientIschemicAttack): This , which is a serious temporary clot, is also called a #MiniStroke or a warning that must be taken seriously.

    The treatment for this includes taking medications to prevent recurrent attacks. A few examples include anticoagulants to reduce the building up of clotting proteins, and antiplatelets to reduce the clotting of the platelets.

    A medical healthcare provider may also recommend a carotid endarterectomy to remove any plaque building up in the neck’s carotid artery, a major cause of .

    How to Help Survivors Recover

    needs rehabilitation after the main treatment. Staying in a rehab will help survivors relearn important skills lost during the attack to the brain. A few of these skills include coordination the leg movements that the patient can walk or perform the needed steps in doing an activity.

    Rehabilitation will also teach a survivor how to perform tasks in order to compensate or circumvent any remaining mobility issues or residual disabilities.

    The process of rehabilitating a patient for recovery can be done at home or in a special rehabilitation center that have the medical supplies and equipment needed to make the rehab program successful and the recovery faster and easier. A few things included in the recovery are:

    Physical therapy: As the patient can have serious problems with coordination and movement, the rehab program includes physical therapy. A physical therapist that specializes in neurological trauma and will help patients relearn complex movements.

    One will also teach ways on how to prevent complications that would otherwise slow down their recovery progress. Finally, the PT will also help improve their coordination and balance, along with other skills for quality of life improvement.

    Speech therapy: sufferers can have speech issues especially when some of their facial muscles are deformed during the attack.

    Due to such deformations, speech becomes unclear. That is why getting speech therapy after is also a necessary component of the recovery process.

    A speech-language pathologist can help in assessing, diagnosing and treating disorders regarding language, speech, voice, cognitive communication, swallowing ability and voice, among other related issues.

    The therapy’s main goal is to help a patient restore the highest communication and language function as possible. With help from an SLP, speech issues along with swallowing or voice issues can be addressed.

    Final Thoughts

    survivors can have a faster recovery with help from the pros, such as a physical therapist and speech therapists. With them, patients can get a meaningful care that will lead to their easier recovery and return to normal function.

    When You're 'the Sick One Now'

    In 2012, a month and a half after the birth of my daughter, I lost all feeling on the right side of my body in the shower. A rushed trip to the ER led to few days in the hospital. Multiple meetings with the neurologist later, I was diagnosed with a transient ischemic attack, or “TIA.” In non-medical language, that means I had a mini-stroke. Blood flow to my brain was briefly blocked, but I didn’t experience any permanent damage. According to my doctor, I was “lucky it hadn’t been worse.” The next months were a blur as I hopped from specialist to specialist, trying to pinpoint the root cause of my experience. It took 13 specialists in two countries almost two years to finally come up with a pair of accurate diagnoses: antiphospholipid antibody syndrome and adrenal insufficiency. Running the gamut of the diagnostic experience was exhausting. My TIA happened while my family and I were living in the Netherlands and we moved back to the United States in the middle of the diagnostic process. When I finally arrived “home” in California, my two kids and I moved in with my mom. I was so thankful for family support after living abroad. I had very little energy at that point to help my husband find and set up our new home. I needed a caregiver. For the most part, my mom was a wonderful support during this confusing time. She helped watch the kids while I drove to appointments with doctors, she adjusted her work hours so I could rest. She made sure we all had healthy food to eat and that I didn’t have to cook it! I was, and continue to be, thankful for her willingness and ability to help out. At one point during this process, I overheard my mom on the phone, talking to a relative. The person on the other end of the line needed my help with something apparently, and I don’t remember now what it is exactly they needed. But I’ll never forget the words I heard from my mom in response: “Christa can’t help you. She’s the sick one now.” It was devastating. I’d never been “the sick one.” I’d always been “the Superwoman one.” The person in my family others could call on to pick up pieces, help out in pinches, and do whatever needed to be done to make things right in any given situation. It was a part of my identity I not only embraced as true, but loved. I saw myself as a strong and capable woman. The comment was a brief moment in an otherwise beautiful time of support. In a way, it’s funny that it continues to stick after all this time. Chronic conditions have a way of sticking around, don’t they? They change one’s identity. Chronic condition diagnoses can make us question everything we took for granted before. We wonder if we ever were “well” before. We wonder if we’ll ever be “well” again. We begin to wonder how we’ll continue to be who we are, or if we’ll even be able to retain our sense of identity. Many times these musings and insecurities remain in our heads, but sometimes our loved ones speak them out loud. When my mom called me “the sick one,” I lost a part of myself that had until that point kept me going. In one comment, I became someone new. No longer super, but sick. Although my conditions are now fully in remission, that might not always be the case. They’re technically still with me. Between then and now, with the help of a gifted counselor, I’ve gained a new perspective on my conditions. I don’t see them as “sicknesses” any longer. I see them as superpowers. What my mom and I didn’t initially realize is that my conditions were setting me on a path to become a superhero. Because of my conditions, I have a daily reminder of my own mortality. I don’t tend to waste time, knowing that every minute of life is precious. I’m able to make every day count and find joy in the smallest of miracles. I’ve learned that there are many miracles in every minute. I notice them now with this magical gift of insight, and I’m able to point them out to others in my spheres of influence, lighting the way for them to learn to find their own. Because of my conditions, I have a significantly higher degree of empathy. I’ve learned on this journey through chronic illness that everyone has their own version of hard. It’s probably fair to say everyone these days has their own version of “sickness.” Whether it’s a compulsive habit, a substance abuse problem, an addiction to anger and bitterness, or a diagnosed chronic disease, everyone’s got something. Prior to my diagnoses, I didn’t watch for opportunities to be kind and listen for opportunities to sit and listen to someone else’s pain. I do now with this gift of the ability to listen between the lines of another’s life story. Because of my conditions, I have a calling. Before my TIA experience, I looked forward to the days my two kids would return to school. I thought that meant I’d jump back into the corporate communications career I’d loved prior to the birth of my first baby in 2009. My 2012 experience changed all that and pointed me in a new direction. I’m on a mission now: to help others walk their own hard journeys. Because of my conditions, I’m able to be a sidekick to others going through tough times. It wasn’t an easy experience to overhear my mom’s phone conversation and it wasn’t an easy process of working my way through the hurt I felt. But the effort’s been more than worth it. I’m stronger now and more grateful. If you’re reading this, I bet you have some superpowers within you too. You’ve clicked on this post, and I believe that means you’re ready to recognize that where others see “sick,” you see “super.” So go out and make the world a better place, dear one, and let your hero cape proudly fly! Getty Image by sSplajn