Color Blindness

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    MS specialist MRI 2nd opinion?

    Hi,
    This is my first post, so my intoduction might be kind of long (apologies!). I'm completely overwhelmed with questions, but I'll try and keep them specific for now and go from there.
    My introduction:
    I'm a 45 year old man. I have not yet been diagnosed with MS (or anything else explaining my condion). I've had unexplained episodes of fatique, muscle weaknes, brain fog, tinnitus/head pressure, and other symptoms over the last 20 or more years. Most were limited to days or weeks. Over the last 8 months or so I've had all those symptoms (more severly) along with many other. Some of these include: worsening of my color blindness (I've had it mildly all my life), loss of coordination, vertigo, "brain zaps" (possibly Lhermitte's sign), 'MS hug' like chest/side/back pain or tightness, muscle and joint pain/stiffness, blured vision, light sensitivity, and others.
    After many years of going along with my primary care doctor's belief that I was "in the honeymoon period of my life" physically, so I should focus on my mental health as the most likely cause of my symptoms (as opposed to pursuing physiological explanations or tests), I finally swicthed to someone else (largely on the recommendation of my long time pyschiatrist who believed I had something systemic going on). My new doc ordered blood work and an antibody test which showed a mildly positive ANA with speckled pattern; but further testing and a rheumatology exam ruled out most things in that realm. At that point he ordered a brain MRI which turned up a very obvious parietal cortical lesion (2/8/22). Since then (after an unbelievable amount of greif and self-advocacy) I've had another MRI (with contrast) and and initial neurology exam (at University of Virginia). My radiology reports were extremely limited, and apparently only focused on the one glaring area (which they thought was 'most likely from a small chronic infarct'). I have done thorough reaserch, and consulted with other physicians, and I'm highly confident that particular lesion looks a lot more like a typical demylinating lesion (involving u-fibers, distinct demarcation, ect.), and also that there are other less obvious lesions and signs pointing in the direction of a demylinating condition (most likely MS).
    My neurology appointment did not go at all as I had imagined. I was dumbfounded when the neurologist told me he didn't believe my condition was "anything in the neurologic realm," and didn't even order any further tests. Presumably this was because the most acute phase of my symptoms was past by that point, so the neuro exam didn't show anything glaring; aside from a lack of right arm swing and my color blindness being severe. He dismissed the lack of arm swing as 'likley favoring it due to shoulder pain' (which I hadn't had for months); the worsening color blindness as 'a common hereditary trait' (presumably disbelieving that it had drastically changed); and any MRI evidence that could possibly point away from the radiology report out of hand (although I overheard him tell his fellow that the cortical lesion was indistinguishable from an MS lesion, and that maybe I'd 'come back in a couple years with more lesions'). He didn't want to pursure looking further into possible causes for the presumed "old stoke" either, saying it wasnt likely they'd find anything. He offered no explanation for why I might of had a stroke, and no reassurances when I expressed concern about my future risk. I had no signifigant risk factors or history to suggest I had a stroke in any case.
    I later learned (online) that he leads a crusade to avoid overdiagnosis of MS at all costs, and is very vocal in his critisism of the 2017 McDonald Criteria, beliving it is too liberal.
    I decided to seek a second opinion (at John Hopkins). The first thing they asked for, after I was referred and sent them my chart and images, was spine MRIs. My original neurologist reluctantly ordered them, but stated he will not appeal if my insurance won't cover them. I have them scheduled for May 1st, and assume I'll probably end up paying out of pocket.
    I'm terrified of being dismissed again, or having my pysical symptoms writen off as 'most likely just pychological' when I do finally get in to see someone at John Hopkins; especially considering the notes in my chart from my previous primary care doctor and neurologist are so biased in that direction.
    So finally to my first question:
    Is there anything I should do to prepare? Specifically, is there a second opinion service for evaluating MRIs specifically for MS anyone might recommend? I sent my second set to Docpanel, but it was before I had done my own extensive research, so I wasn't able to ask the right questions or point out my observations. Also, the radiologist reading it wasn't someone specialized in demylinating conditions. It came back very general, brief, and inconclusive as to possible demyelination; but also with notable inconsistencies from my initial reports.
    Any other advice is more than welcome of course. Thank you to anyone who took the time to read all that!
    -Tom

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    Making Article Images and Figures More Accessible to the Color Blind

    I was recently going through articles in Nature, when one stood out to me. It was titled “Color me better: fixing figures for color blindness.” As someone who has color blindness myself — and who knows three other students and faculty within my department who are also color blind — I thought this article might be of some interest, so I decided to take a quick look at it. Here are a few of my own thoughts — some of which are variations of those already in the Nature article, some of which are my own — to help make figures more accessible to color blind readers, whether in scientific papers, PowerPoint presentations or in the classroom. Don’t make figures that rely on color alone to be understandable. This may sound complicated, but it’s not that hard. For example, if you have two lines on a graph that are red and green, why not make the red line solid and the green line dashed? Or use triangles for the data points of the red graph and circles for the data points of the green one? It takes only a few seconds longer, but can save a color blind reader many minutes of frustration trying to decipher the graph. Limit your use of reds. As a widely used color for highlighting objects of interest, red is by far the most common color that color blind people struggle with. If you must use red, avoid pairing it with black if at all possible; as someone for whom red text doesn’t stand out against black text, I, along with most of the color blind population, will thank you. Be considerate about confusing colors. In addition to red and black, I (as with many color blind people) can’t reliably distinguish dark red and brown, dark green and brown, lime green and yellow, medium green and orange, blue and purple, or pink and grey. Blue and yellow are a good combination, as are blue and white, light grey and bright red, red and yellow, yellow and black, or even dark red and lime green. Add more color. Sometimes the problem color blind people face is that the colored areas are too small to distinguish. In my case, although red text doesn’t stand out from black text, I can easily see a red jacket hung on the back of a black office chair. In the case of figures, consider making your lines bolder, dots bigger, etc. Label right on your figure. Instead of using a legend, consider adding text directly to your figure. That way, color blind people don’t have to struggle to match the colors of the legend to the colors of the figure. Additionally, putting labels right on the figure reduces the amount of working memory needed to interpret the figure, which can be helpful for those with limited working memory. Don’t overdo it with colors. If the five colors on that graph don’t serve any purpose other than looking pretty, it may be better to remove the colors entirely. Highlight areas of interest. This is particularly useful if you’re including photographs in your paper and the color of the object of interest is difficult to distinguish from the background or from another object in the photograph. One solution is to circle or point to the object(s) of interest. Another is to add false color to the thing you’re trying to highlight — for example, if I was trying to highlight an orange cone in a green field, I might lighten the color of the cone somewhat, and darken the color of the grass. If you choose the false color route, consider supplying a true color image next to the recolored one, so that non-color blind people can see what the photograph actually looks like. Use a color blindness simulator. One of the best available is Coblis. Simply stick your image into the simulator and make sure that it’s interpretable by people with red and green color vision anomalies, as those are the most common. Use descriptive figure captions. While figure captions are useful for anybody to help understand what’s going on in an image, there are cases where a descriptive caption could make the difference between my being able or unable to interpret a figure. Writing a long caption isn’t a problem at all — better to overdescribe than underdescribe. As a bonus, you’ll also be making the paper more accessible for people who rely on screen readers! In future, all I ask of you is: spend a few extra minutes thinking critically about colors whenever you’re making figures. A few extra minutes of thought and consideration when creating a figure can save a color blind reader a lot of frustration down the road.

    Rose Callahan

    Why the War on Drugs Failed and What We Should Do Instead

    So, all of us in our right mind can agree that the war on drugs is a horrendous policy disaster that has stretched for decades and continues to traumatize individuals who use drugs. Much of what has come out of all episodes of being “tough on crime” has been hysterics and moral panic and has been strategically designed to criminalize people of color. Drug Policy Alliance explains that racism has always been at the forefront of laws involving substances. “The first anti-opium laws in the 1870s were directed at Chinese immigrants. The first anti-cocaine laws in the early 1900s were directed at black men in the South. The first anti-marijuana laws, in the Midwest and the Southwest in the 1910s and 20s, were directed at Mexican migrants and Mexican Americans. Today, Latino and especially black communities are still subject to wildly disproportionate drug enforcement and sentencing practices.” While some may associate the war on drugs starting with Nixon when he declared drug abuse “public enemy number one,” none of this rhetoric was new if we recall the reactions of certain people during “reefer madness” and alcohol prohibition or even the mere mention of jazz music. Among other offenses, Nixon created and beefed up law enforcement agencies such as the Drug Enforcement Agency (DEA) and signed the Controlled Substance Act into law. John Ehrlichman, an aid to Nixon later revealed how deliberate their strategy was in targeting specific groups: “We knew we couldn’t make it illegal to be either against the war or [Black]. but by getting the public to associate the hippies with marijuana and blacks with heroin, and then criminalizing both heavily, we could disrupt those communities. We could arrest their leaders, raid their homes, break up their meetings and vilify them night after night on the evening news. Did we know we were lying about the drugs? Of course we did.” From the beginning, the war on drugs was never about drugs. The Reagan administration made shit worse. They exponentially increased spending for law enforcement agencies that handled “crime related to drugs,” enacted mandatory minimum sentencing on the federal level including atrocious sentencing disparities between cocaine and crack cocaine, and pushed us into the situation we are in today — the nation with the largest prison population in the world with the majority of individuals that are incarcerated being people of color. First lady Nancy Reagan also contributed the situation. She toured the globe preaching “Just Say No.” Wait… it’s that easy, Nancy? We probably should have let the other 19 million individuals with a substance use disorders know. Fast forward 35 years, and only one administration has done anything to correct the war on drugs and its consequences. Obama pardoned and commuted the sentences of a ton of people, designated $1 billion for the opiate crisis over two years, and made Michael Botticelli, an individual in recovery (*gasp*), head of the White House Office of National Drug Control Policy (Lopez, 2016). But this has not been nearly enough as overdose deaths for synthetic opiates (i.e. fentanyl) have skyrocketed the past few years and places like Los Angeles County Jail and Cook County Jail are some of the largest providers of mental health services in the country. And, although Trump is a very stable genius and the least racist person in any given room, it should be noted that he supports capital punishment for certain drug crimes (yeah… that’s a thing… in the United States of America. It has never been carried out here, but 2021 is not over yet). The truth is: The. War. On. Drugs. Is. A. Complete. Failure. The United States has spent more than $1 trillion over the past 50 years and we have nothing to show for it besides the millions of people who are dead or in prison and massive amounts of trauma on all levels. Imagine what we could have accomplished if that $1 trillion have been invested in treatment and solutions or even… a cure? Substance use continues to run rampant and often individuals have to deal with these issues alone. Words like “addict” or “dirty” are stigmatizing and have been used as a tool to ostracize and attach a label to people. If we label someone as “different” or a “problem” it is easier to turn our backs and abandoned them. This type of behavior can have a powerful effect on a person. More often than not, an individual with a substance use disorder has a history of trauma and many people report significant abuse and neglect beginning in childhood. Individuals who use drugs often continue to endure struggles into their adulthood, as well. And what is often seen is that these individuals are experiencing a never-ending cycle of struggle that is being kept alive by demanding that they get “clean and sober” without fixing the circumstances that brought them to this point in the first place. Dr. Gabor Mate, an addiction psychiatrist who used to work in Vancouver’s skid row and focused much of his work on the intersection of trauma and addiction, says it best: “You take these abused, traumatized people, you place them outside the law, you put them in jails, and you hound them all their lives, treating them like criminals and bad people and failures and rejects and less than human. And then we wonder how come they don’t get better.” So, it is a self-perpetuating cycle of taking traumatized people and then retraumatizing them. And then hoping at the same time: “why don’t they listen? Why don’t they get better? Why don’t they give it up?” Well, they don’t give it up because the more hurt they are, the more they need to escape.” How does this fit in with the war on drugs you ask? It fits in perfectly. A majority of the people who are arrested on drug charges are usually in possession of a small amount, for personal use. To be clear, most drug arrests are not some multimillion-dollar scheme that involves trafficking kilos of cocaine through Miami à la Scarface. The vast majority of drug arrests are individuals keeping up with their habit. When we arrest people for possession of drugs, they get criminal records. And when we arrest people multiple times, they can get felony records and may have to serve time in prison. What happens next is the person who may already experience the stigma of substance use and trauma, now has a felony record. Individuals with felony records are not done serving time when they get out of prison. They are monitored because we have stipulations on their freedom (even though they already served their time). However, we do not make it easy for these people to survive. Individuals with felony records have an incredibly hard time obtaining employment and housing because of background checks and bans from living in public housing. People with felony convictions are often not eligible for financial aid and grant programs which makes it virtually impossible to go to college. And, because they are not able to vote in some areas, they have little say on changing legislation related to these issues. So, what do you do when you have been totally disenfranchised, have limited positive outlook and are stressed tf out?  Whatever you do, do not (*gasp*) get high because they will send you straight back to the penitentiary while asking what you did wrong. Some people never had a chance at recovery, and some were never intended to be given one. So, what would happen if we did something like, I don’t know, no longer treated substance use and addiction as a criminal issue and treated it like a public health issue? First, there needs to be a shift in perspective regarding substance use and perceived criminal behavior. Marijuana is legal in a bunch of states, so we should ask… why is it legal for some people to sell marijuana, while many people are serving prison sentences for… selling marijuana? It’s a rhetorical question. Aaron Covington (@bearcov) said it best when he tweeted, “When the dispensary looks and operates like an Apple Store it’s time to release a lot of incarcerated human beings. A lot, a lot.” We are also going to have to reckon with the fact that when Black Americans were struggling during the crack epidemic, they were met with punitive measures and placed in cells, while white Americans that are currently struggling with the opioid epidemic, are being more frequently met with compassion and placed in treatment. As a nation we need to recognize that many difficult conversations need to be had about the role that systemic racism has played (and continues to play) in the war on drugs and begin the process of making sincere amends. Symbolic gestures are not enough, we need concrete plans of correction. Another shift we need to make is learning the difference between the decriminalizing of drugs and encouraging the use of drugs. We will not have to spend a lot of time on overhauling this part of the system because Portugal has been doing it for almost 20 years with incredible results. According to Drug Policy Alliance (2019), “In 1999, Portugal had the highest rate of drug-related AIDS in the European Union, the second highest prevalence of HIV among people who inject drugs, and drug overdose deaths were rapidly increasing.” Did Portugal declare a war on its own people? Nope. Portugal acted with compassion. In 2001, Portugal decriminalized drugs and launched programs that includes harm reduction techniques, education and outreach, and expansion of treatment options including medication assisted treatment (Drug Policy Alliance, 2019). Because they recognized that individuals who use substances are human beings and not criminals, they were able to effectively address the issues. Drug Policy Alliance (2019), reports dramatic results, “The number of people voluntarily entering treatment has increased significantly, while overdose deaths, HIV infections, problematic drug use, and incarceration for drug-related offenses have plummeted.” Also, we are going to have to have to address the decades of individual and collective trauma in the communities of color that have been destroyed by the war on drugs. If it’s no longer a crime to be in possession of drugs, then certain agencies like the DEA will become obsolete and can be dissolved. That leaves us with a ton of cash that can be used to help people and their communities who have been terrorized for decades by the war on drugs. Additionally, these individuals and their communities will need sole ownership of any dispensaries in that neighborhood, as well. While this barely scratches the surface of the magnitude of repairs that needs to be done, it is a start. Once we have begun to overhaul the larger, societal issues that has jammed up so many people, we need to look at how we treat individuals who actively use drugs. Traditionally, it has been said that a person has to “hit rock bottom” in order for them to be willing to accept treatment. Tragically, with the number of drugs that are being laced with deadlier substances, rock bottom is often death. If they are dead, how are they going to get treatment? We need to re-evaluate the way we treat people and start meeting them where they are at. As discussed, people with substance use disorders more often than not, have extensive histories of trauma. Joe Foderara, co-founder of the Sanctuary Institute, suggests that we should move away from asking “what is wrong with you” towards asking “what happened to you?” This shift of responsibility and blame can have a profound effect on people who use drugs. This collective attitude adjustment needs to also include being respectful of people’s journey in recovery. We cannot continue to make demands of people who are already struggling to survive- mentally, physically, spiritually etc. We can, however, make life less lonely and hopeless by demanding services that will keep them alive until they ready to get help. Does this mean dedicating our lives to taking care of the individual and running around like a chicken with its head cut off? Absolutely not. But, what we are doing is not working; we can no longer look away and abandon people who use drugs. In conclusion, the war on drugs was never about drugs. From the beginning it was a coordinated effort to make certain people, largely people of color, illegal. Over $1 trillion dollars has been spent on hunting down and imprisoning people who use drugs, while substance use treatment options, including trauma treatment, have dwindled. Mixed messages on how to recover has further confused the situation. Drastic change is needed on the individual and societal level to correct our path going forward. None of this is impossible, we just have to do the work. It is time to end the war on drugs, which will subsequently end the war on people who have been traumatized. Further reading: “The New Jim Crow: Mass Incarceration in the Age of Colorblindness” by Michelle Alexander “In the Realm of Hungry Ghosts: Close Encounters with Addiction” by Gabor Mate, MD

    Katie D.
    Katie D. @katie-d-1
    contributor

    9 Signs of Nonverbal Learning Disability We Explained Away

    When I was finally diagnosed with nonverbal learning disability in my mid-20s, I like to say that suddenly my whole life made sense. Here are nine ways it showed itself and how my family and I managed to explain most of them away for years. 1. Lack of balance, coordination and motor skills. I was a preemie, born at 34 weeks which we knew caused a lot of issues with my eyes and vision. My best-corrected vision is 20/40 — 20/60, I have poor night vision, slight color blindness, and very little depth perception. If you have poor vision and almost no depth perception, you’re going to be uncoordinated, run into stuff and trip a lot! Turns out, I lack visual-spatial awareness too. 2. Zero sense of direction. One very common symptom is constantly getting lost, and I mean constantly. This is something my mom struggles with, though much less severely, to the point that it became a running joke. We assumed this one was genetic, joking that I inherited her sense of direction, or lack thereof. 3. Advanced vocabulary. Mom has always read a ton and used a large vocabulary, it was assumed I just picked it up. 4. Constantly questioning. Those with NLD are known to ask a lot of questions, like incessantly. Instead of physically exploring the environment around us and relying on our faulty spatial awareness, balance, coordination and motor skills, we just ask questions about everything. When asked why they bothered to answer me all day long, my parents said, “How else is she going to learn?” 5. Amazing memory for the tiniest details. Whether it was remembering a minute detail of my favorite movie, or quoting back verbatim what I had been told or overheard in conversation, even years later, it was the cool thing I was always able to do, and I loved showing it off. 6. Talking to myself. I have always talked to myself. When I was little, it was to imaginary friends, but as I got older, I didn’t stop, and it got harder to hide. It’s natural for me, and when I tried to stop, I never could. Turns out, it’s just part of how I process the world: converting the nonverbal and abstract into words my brain can more easily manage. 7. Academic struggles. Once I started school, I really struggled when it came to learning to tell time, count money, write neatly and read. We thought the reading issue was at least somewhat related to my vision. My dad’s handwriting is absolutely horrendous, and concerns about the rest of it were met with, “Everyone struggles with math and reading.” As I got older, my teachers’ theory was that my issues were of maturity rather than neurology, and could be disciplined out of me. Needless to say, constantly being told I was “immature, spoiled, coddled, lazy, irresponsible, or just not trying” failed to improve the situation, and only led to anxiety, depression and low self-esteem. 8. Mental illness. While not everyone with NLD contends with mental illness, it is rather common, and it’s a major component for me personally. I always say I was born anxious. For as long as I can remember, I’ve been afraid of everything. I thought it was normal to have adrenaline coursing through your veins 24/7, I never knew any different. I also had some OCD-like tendencies, and suicidal depression hit at puberty. How did this get missed? I have an extensive family history on both sides of these exact conditions! We again assumed that one was genetic, and part of it may be. 9. Sensitive startle reflex. Speaking of sudden loud noises, my dad always commented on my hypersensitive startle reflex, saying one time “You look like you’re having a seizure.” When I finally found NLD, I read that this is a common symptom, with more exaggerated startle response on the left side of the body. I realized it was always only my left side. So, while NLD looks different for everyone, this is what it looked like for me before it had a name. Sometimes I still wonder how we missed it. But, maybe by writing this, someone else who sees themselves in this list can get their answer sooner than I did.

    Vanessa Schön

    Validation Is Important in Supporting Trauma Survivors

    What is emotional trauma ? Emotional trauma is the result of highly distressing events. Some of these events include war, childhood abuse , rape or the death of a loved one. However, not all traumatic events affect individuals in the same way. Two sexual assault survivors may respond entirely differently to what happened to them; one may develop post-traumatic stress disorder (PTSD) and the other one may not. But what matters most is this: when a survivor speaks up, many times people fail to listen and support their truth. As a psychotherapist, I see a theme come up often for survivors of trauma : not feeling validated by people around them. It’s important to know that you don’t need to understand what someone lived through in order to support them. You just need to believe that what they are experiencing is real for them. Trauma leaves an imprint on you; it changes you. As a trauma survivor myself, I am aware of the effects that traumatic events have had on me. We don’t heal from trauma by ignoring it, denying it or pretending like it never happened. We heal from it by processing it, by integrating the experience — because it happened — into our lives. Yes, trauma impacts you. No, you can’t go back in time to the person you were before that happened, because it did happen. Yes, your life changed since that moment. However, a change in life doesn’t mean your life is going to be “bad,” it’s just different. It pains me to see individuals affected by trauma not heal, not because of the trauma they experienced; humans are incredibly resilient at surviving and thriving. Oftentimes, people don’t receive adequate treatment or support. Trauma is complex; it’s complex enough for professionals treating trauma to understand. I work with trauma survivors every day and I still needed to receive help myself to cope through my own. I couldn’t do this alone. Survivors don’t have to. Family members and loved ones of survivors can also benefit greatly from treatment and support. Trauma often impacts an entire family, not only the direct victim. If everyone works to heal, then the better off everyone will be, individually and collectively. Survivors are all around us. They are us. How do you know who has trauma ? You don’t. Trauma doesn’t look a certain way. We don’t wear it on our faces, we wear it internally. It isn’t OK for survivors to walk around silently, bogged down by shame. They don’t have to. It’s not OK for the 33-year-old woman sitting alone in fear in her apartment, triggered during the middle of the coronavirus pandemic because her safety is threatened. Neither is it OK for the 55-year-old man who wonders if he has any worth because he was assaulted as a child. What about the 47-year-old woman sleeping in the downstairs bedroom of her house because every time she hears her husband’s footsteps she is reminded of all those people who hurt her when she was younger? This is what happens when you live with emotional trauma . You are forced to experience and remember things that you never asked for. But does trauma have to be a life sentence? Something happens to you, someone hurts you, and now you have a lifetime of pain to live with? An existence bathed in shame? A collection of flashbacks, panic attacks , fear, insomnia and darkness? Your life forever shattered into fragments of a person that was once whole? No. This is what surviving trauma often feels like. But I refuse to believe that this is what you have to accept as your life because while you can accept what happened to you this does not need to define you. It doesn’t need to ruin you, or your loved one, sister, daughter, father, brother, friend, child. To society and loved ones affected by trauma : are you able to see us? To meet us where we are? You may not understand, but you can get to where that young woman is in her apartment. You can walk over there, take her a sandwich since you know she hasn’t eaten all day, send her a text message, and then another one, and even if she doesn’t respond, show her you care. To the husband whose wife is in fear; I would ask, are you open to couples counseling? We also want to know how to support you because it must be very painful for you to not understand why your wife is running away from you when it’s not about you. You can seek to both understand each other, talk about what’s actually happening and heal. A 7-year-old came into my office once, who I will refer to as Angie, showing symptoms of PTSD. She had found her cat dead, bloody and she saw the body. Her fuzzy friend’s eyes were glazed over a death stare. She was informed that her cat was dead over the phone from a relative when she and her older sister were away on a family road trip. Upon hearing the news, she and her sister drove back and ran to their house; the fight-or-flight switch activated for both of them. All of their attention turned towards racing to get to their cat. Angie didn’t know her beloved cat was deceased when she and her sister received the call. Upon arrival, Angie’s sister wailed in shock and pain, cries that Angie recalled and had a reaction to physically. Angie came and saw me because every time she would leave her other cat home alone, she began experiencing symptoms of panic. She lived through something traumatic. But others would be quick to judge, asking, “how could this be? She’s only 7. It’s not like anything bad happened. It was just the cat. What’s wrong with her?” This child is walking around with all of these intense feelings, suicidal thoughts and emotions, not being validated. She is walking around in fear because of what’s happening to her and nobody is giving her the reassurance that what she is experiencing is a typical reaction to what she lived through — something traumatic. “No, because it was only a cat. So she’s exaggerating, and she needs to get it together, and get it over with already, stop crying in school, your grades are low.” If that child is not supported, what message is she getting? Nothing happened, so nothing is wrong, and therefore the child sitting in front of me will say to me, “There is something wrong with me.” This couldn’t be further from the truth. Do not deny a person’s reality. It’s the same thing as when I am with a client in therapy. Their truth is their reality, and that is where I need to meet them at. Not my reality. It doesn’t matter if I agree, all of that for the purpose of supporting someone is irrelevant. You don’t need to agree or understand, as long as you know that what they are experiencing is real for them. Think of a person who is colorblind, for example. If you and that individual are both staring at a red object, and the person tells you that the object is a different shade than what you see, does that mean that what they see isn’t true for them? They see what they see. Denying their reality is as absurd as me telling that individual, “of course not! You don’t see that! Colorblindness isn’t real.” Similarly, when you hear somebody speak up about emotional trauma , or how they are feeling, do not deny their reality because by doing so, you give them the message that they are wrong, This leaves people feeling completely and utterly hopeless, alone, shame-ridden, further traumatized, misunderstood and alone. They are not wrong, what happened to them was not OK. Even if they are sitting at the dinner table with their entire family sitting around them and dad just got home and bought a new cat so that Angie stops crying already and can fall in love with this new cat. Even in that case, that child, her pain, and her reality are not validated. As a therapist, this is what I can tell you. The message we all need is this: I’m here. Is there any way I can support you? Those are the types of things I’m talking about. In the world that oftentimes fails to meet survivors where they are, either due to people’s lack of understanding, judgment or their own fears of what they don’t want to see within themselves because it’s easier for people look away — to walk away than to see the reality that’s actually happening in front of them or inside of themselves, everywhere, every day. I dare you to not look away. See each other, and show up for yourself and for one another.

    Time Blindness: Why ADHD Makes You Struggle With the Passage of Time

    I am honestly so excited to write this post because it’s something I have dealt with my entire life, but I’ve never had the vocabulary to describe, and I think I might have a lot of followers in the same situation. So buckle up, everybody; it’s time to learn ab out “time blindness!” What is Time Blindness ? Let’s start simple: what is time blindness? It’s a difference in how some people experience the passage of time. Namely, they don’t. Time blindness is a phenomenon where a person does not recognize that time is passing, or how quickly it’s passing, or how soon an even t or deadline is approaching. It’s something I deal with day in, day out. For instance, I thought it was 2 p.m., maybe 3 p.m. right now. I glanced down, and it’s already after 4 p.m. I simply do not sense time passing the way most people do. Here are some of the other ways time blindness affects my reality: I have a hard time with long-term deadlines because anything that isn’t happening today or tomorrow feels years away. I am late all. the. time. because I always underestimate how long it will take me to get ready to leave for something. I always forget to account for travel time. It’s like my brain thinks that traveling takes place in another dimension where time doesn’t count. Sometimes I sink into hyperfocus and lose hours of my life doing something, not moving or eating or using the bathroom until something shakes me from my focus and I realize it’s dark out and I’m starving. Every story I tell starts with “the other day” because I have no idea when things have happened in the past. It might have been 10 years ago or it might have been yesterday. I can remember (sometimes) if I really try, but if I go with what my brain wants to do naturally, anything in the past is lumped into the same category. Painful memories typically stay fresh for a really long time because I don’t necessarily perceive all the time that has passed between the bad memory and now. If I haven’t processed what happened, it just stays in my brain as if it just happened. Those of us who experience time blindness aren’t doing it on purpose, like at all. My failure to recognize the passage of time makes me late on a regular basis, and as a result, some people think I don’t care about them, or bosses think I’m slacking off. It has nothing to do with being lazy or irresponsible. It’s a neurological difference, not a choice. What Does Time Blindness Feel Like? I’ve been thinking about this for a while now because I think it could be really helpful to explain to others what time blindness actually feels like. After all, if you experience the passage of time normally, it might be kind of hard to wrap your head around time blindness. Imagine walking into a “Bath & Body Works” and being overwhelmed by the deluge of scents. Then try to sniff your way to the lavender lotion. You’re going to struggle; you can’t really smell any one scent because there are so many bombarding your senses at the same time. That’s sort of what time blindness is like because you know you have so many priorities, and you have no idea where or how to start. Imagine being in the ocean, submerging yourself in the water and getting caught in a current. All of a sudden, you have no idea which way is up, how to get to the oxygen. That’s sort of what time blindness is like because you might know you have a deadline coming up, but it doesn’t feel like there are any cues for how close or far away it is. Imagine being on a game show where you can’t hear the questions. Everyone else can hear it, so they’re getting all the answers correct, but you keep getting it wrong, and your team is getting more and more fed up. That’s sort of what time blindness is like because you just feel like you’re missing an essential part of the equation in life, and everyone is mad at you for it. What Causes Time Blindness? As far as I’m aware, the only known cause of time blindness is attention-deficit/hyperactivity disorder ( ADHD ). At this point in my life, I have not been diagnosed with ADHD, but based on how deeply I relate to time blindness and other classic ADHD symptoms, I am looking to get tested once this pandemic ends and I can see my therapist in person. For those of you who don’t know, or for people who still have a relatively limited idea of ADHD, it is a neurological condition where the executive function system of the brain has all kinds of differences and malfunctions, from reduced dopamine production to delayed development in different parts of the brain. These differences and malfunctions lead to problems with prioritizing tasks, starting and finishing tasks, switching attention from one thing to another, regulating emotions, and perceiving time (among other things). If you want to know more about ADHD, just check out  this amazing video  by Jessica McCabe from “How to ADHD.” It’s short, easy to understand, and Jess is awesome. 5 Tips to Help You Deal With Time Blindness OK, so time blindness isn’t just laziness, but how in the world am I supposed to deal with it? Do I just have to live with it, constantly being late and missing things? No, not at all. People who are time-blind can learn clever ways to get around their time blindness. Here are a few I’ve learned from various sources, like  How to ADHD ,  Black Girl Lost Keys and more. 1. Add some clocks to your life. It’s much easier to detect that time is passing if you have reminders. Put lots of clocks in rooms where you spend a lot of time. Wear a watch, put up wall clocks, plug-in digital clocks, whatever works — just make sure they’re at eye level, easy to read and in a place you can easily see from most places in the room. 2. Start keeping track of how long tasks take. This is actually one thing I learned to do on my own (though I haven’t been great about keeping up with it). One aspect of time blindness is a poor understanding of how long various tasks can take to complete. I often find myself thinking “Oh, I’ll just write a blog post real quick!” Then, bam, it’s five hours later. Try writing down how long you think something will take before you start, then when you’re done, write down how long it actually took. Next time you go to do that activity, allot yourself at least that much time to get it done. (Do not fall into the trap of thinking you’ll magically do it faster this time — you won’t.) 3. Break long-term deadlines into smaller deadlines. Give yourself multiple mini-deadlines leading up to the final deadline so that you can get bits and pieces of the thing done and don’t have to do it all at once the night before. I’ll be honest here, I’ve only ever successfully done this for myself once, but it was great. I had a ton of articles that needed written for work, and I did the math to figure out how many articles I had to get done each day to meet my deadline, and each day I only focused on that day’s goal so I wouldn’t get overwhelmed. 4. Use visual timers to help stay on-task. Even if you are surrounded by clocks, they don’t really do a great job of visually demonstrating how much time is passing. So the minute hand has moved a little … or a lot. Either way, it looks pretty similar, and that can make it hard to fight time blindness. Instead, try using a visual timer like  this one  that has a red section that disappears as time passes. That way you can actually see the time. I’ve also seen people who say they like to boil water and try to focus and get their tasks done before the water boils. For them, this makes time feel more real because the time it takes for water to boil isn’t arbitrary, it isn’t just a meaningless timer; it’s something physical they can perceive more accurately. Though, fair warning, I’m pretty sure this would just lead me to leave a boiling pot of water on the stove for way too long. 5. Journal to keep track of the past. It might not impair your day-to-day functioning, but some people are very upset by how their memories seem to blend together due to time blindness. Like I mentioned before, all my stories start with “the other day” because I genuinely don’t always know when different things have happened. It all feels like it’s just one thing called The Past. It’s usually not too big of a problem for me, but I have definitely had times where it feels like my whole life isn’t real because it just blends into one or two big experiences and everything else just disappears. This might be more of a depression thing, but I suspect that time blindness doesn’t help. Journaling can be a good way to keep track of your memories and any time you feel like you can’t even remember what you’ve done in your life, you can flip through the journals for some help remembering. So what about you? Does all of this sound familiar — the troubles with long-term deadlines, the losing track of time, all of it? Does time blindness feel different for you? Let me know in the comments below, and make sure you check out my blog, Megan Writes Everything, so you don’t miss out on any new mental health content! A version of this article was previously published on the author’s blog, Megan Writes Everything.

    Community Voices

    First day out of the hospital

    It’s my first day out of the psych ward after spending five days there and it feels so strange. My boyfriend is treating me with kid gloves, doing everything for me without me asking. If I say I’m thirsty, a glass of water is beside me within 20 seconds, and so on. All I can think about is the hospital. I miss my friends and all of the people there. I miss the routine. I miss sitting at the table in the day room and coloring with people I became closer to in a matter of days than some I’ve known for years. Home isn’t what I pictured it to be when I wanted desperately to leave the hospital. Now I just miss the place I felt trapped in. I think I’m annoying people because I’m either talking too much about all the interesting people I met, or not talking at all because I’m thinking about those people. I have nothing else to offer in conversation right now. I feel like I just got out of jail and don’t know how to act in the real world anymore. I wonder what my friends who are still there are doing. It’s 11:40 so they’re all eating lunch right now; I wonder if angela got tacos again and if she forgot to write down “no tomatoes.” I wonder if the nurse is taking too long to get Jacob his insulin, and if anyone else is speaking up for him now that I’m gone, because he’s too nice and polite to be assertive for himself. I wonder what dope and weird picture he drew today, and who else he had to explain his color blindness to. I wonder if candace and tracee have stopped crying everyday. I miss my little island of misfit toys. No one on the outside understands the way they did. #BorderlinePersonalityDisorder #PsychWard

    Community Voices

    Looking Healthy: How My Invisible Illnesses have gone unseen

    As a child, I was never the sick one. I was the one who exaggerated any and all injuries to my parents. A sprained ankle or wrist was never cause for concern. I would get hurt easily. I couldn’t see well but not even doctors believed me.

    My joints have been hypermobile all my life and I thought it was so cool. I used to show off my “double jointed” elbows and twist my arms 360 degrees as a child to show off how well my joints moved. People either thought it was cool or were grossed out. The reactions were fun nonetheless.

    As I got older, injuries happened more frequently. My knees got bad, my wrists got worse, and my ankles caused constant problems. Dislocations, subluxations, sprains, but almost never breaks. If it wasn’t broken, I didn’t need a hospital. My joints always popped back into place.

    As a junior in high school, my best friend had PCOS and a cyst ruptured her ovary. She went into emergency surgery for it. A few weeks later, pelvic pain started that just kept getting worse. After telling her about the pain, she told me it was the same as what she felt each month and to go to my mother. The first hospital trip, they overlooked ovarian cysts. When the pain didn’t get better, we went back. They had found a benign cyst on my uterus the first time, but a new test had confirmed I had ovarian cysts. The first scan had seen them but they were overlooked. I started birth control to stop cysts from forming.

    When I was a senior in high school, I took a sports medicine class for my physical education credit because the doctor decided I physically could not handle gym class. In this class, I discovered #EhlersDanlosSyndrome during a musculoskeletal disease project. I covered hypermobility type, type 3, for my presentation. I demonstrated every diagnosing criteria on the test. I was asked if I had it and I said I didn’t know. It turned out, my father has it, and I do too. I missed school because of doctors, but, because my teacher was the reason I found out, all of my teachers understood.

    Ehlers-Danlos Syndrome is a connective tissue disease. Each type has its own properties. Hypermobility type, the one I was diagnosed with, presents with hypermobile and lax joints, elastic skin that feels velvety, and some vascular problems. No one realizes how horrible it is to live with this condition. Vascular type, the type the doctors think I may have, causes a lot of vascular problems amongst all organs in the body. Many die by the age of 27 from aortic dissection. A geneticist refused to test me because I had not gone through an aortic dissection yet, even though all of my heart problems point to it.

    I was diagnosed with premature ventricular contractions, low blood pressure, #SinusTachycardia that happens everyday, and one leaking valve. One valve later became three. I was told I may never be able to have kids because my uterus could rupture. My doctor has been fighting for years for me to be tested for vascular type, type 4.

    The day before my senior prom, I was diagnosed as legally blind. At 14 I discovered I needed bifocals. Senior year of marching band, I realized I couldn’t see on the sides of my vision. Diagnosis didn’t come for years after, and I was diagnosed with #RetinitisPigmentosa. RP is a rod cone dystrophy that starts with the peripheral vision deteriorating. Some just get to that point. The second step is #ColorBlindness. The last step is being completely blind. I am currently going colorblind.

    At 21, I went through a #Miscarriage. Three days later, I stopped walking. I could feel below my waist, but could move nothing. It started as one leg being hard to move. After a half an hour, I couldn’t move my lower body at all. I was rushed into the hospital for testing. While I discovered I have #Scoliosis, spondylosis, and four bad disks, nothing else came back. I was diagnosed with conversion disorder.

    Conversion disorder is common in people who have been abused. After or during a stressful time or event, the mind shuts down part of the body to cause it to slow down and relax. Some go temporarily blind. Some become mute. Some become deaf. I become paralyzed.

    While pregnant with my miracle son, I discovered that I had gone #Undiagnosed with acid reflux all of my life. Water had always caused heartburn. When told to drink more water at a prenatal care appointment, I explained that water caused heartburn. When they found out it wasn’t the pregnancy, I was put on two acid reflux medications. Nexium is my next option, but I cannot afford it and we are fighting with my insurance for them to cover it to this day.

    I was diagnosed with Grave’s disease almost a year after discovering that my thyroid is hyperactive. I weigh too little for someone who is 5’7”, and have been accused of being anorexic due to my size. I’ve been told to eat a sandwich on many occasions. Someone even told me that I just need to see a dietician, after I was told my enlarged thyroid could be cancerous. I found out it wasn’t #Cancer, but I was still treated horribly.

    On top of those, I have #Depression, #Anxiety, PTSD, #Asthma, a polyp in my gall bladder, chronic myoclonic #Epilepsy, #Arthritis, carpal tunnel, TMJ, an astigmatism, a tilted uterus, tendinitis, high functioning autism, chronic migraines, and many #FoodAllergies, one of which is deadly.

    I have been called a hypochondriac. I have been told I have Münchausen syndrome. I’ve been told I’m faking everything for attention. I’ve had doctors look at me and tell me they won’t do tests because I have not had rare complications associated with certain conditions. When I can barely move, I am treated like I’m faking. If I used a handicapped device such as an electric cart, I get dirty looks.

    I want people to realize that just because I look healthy, that doesn’t mean I am. My son is 17 months old and doesn’t yet understand that his mommy won’t be able to do things like play soccer and chase him around the yard. I dread the day when my son realizes how sick I am, even if I don’t look it.

    Please be mindful of that seemingly healthy person with a handicap placard, or that young person in the motorized shopping cart. They may be sicker than you know.

    3 Reasons Being Colour Blind Can Be Amazing

    When you think of colour blindness you’re probably thinking that people with this condition only see black, white and shades of gray. Sounds depressing, doesn’t it? If you’ve read my previous colour blindness essay, you’ll see this is definitely not the case. In fact, there are times when I consider myself fortunate to be protanopic. Here are three reasons why. 1. When I look at the forest I see fall colors all of the time. Do you like traveling the temperate areas of the world in September and October, when the deciduous trees gradually change from green to yellow, red and various shades of orange (or they used to, back when I was younger)? Doesn’t it look spectacular? Now imagine if you could see this all year round. To me, anything green is a brilliant, bright shade of orange, including tree leaves to the grass on the lawn. Furthermore, the trees aren’t just one shade of orange in my eyes, I see as many different shades of orange as most people see shades of green. Maple leaves are a rather bright orange, pine needles are a darker shade and balsam fir looks dark orange, bordering on red, making a strong contrast between the blue of the water. Needless to say, spring is one of the most beautiful times of the year for me, perhaps it’s also why I am generally happy. 2. I have excellent night vision. This has come in handy many times over the years in situations ranging from routine nighttime driving to finding my way out of a trail at night (that hike took a little longer than expected!) Unless it is very dark or an overcast night, I can see almost as well as I can see during the day. In fact, sometimes I can see better when I don’t use a flashlight at night than when I do use one. The flashlight only lights up a narrow area directly in front of me for a limited range and destroys my night vision. But when I am walking without the light, I can take advantage of my strong night vision and see all around my head. 3. It can make for quite amusing moments. I truly do see the world in a different light which can be a lot of fun, both good and bad. Some of the comments that have popped up over the years often resulting in copious laughter, include, but are not limited to: “I can’t find the green hat.” (Some days that same hat becomes a brown or orange hat.) “Man, can’t you come up with some color other than gray for these quiz papers?” (those papers were actually pink.) “Did I seriously mark these in black instead of red? Oops.” (self-explanatory!) “Can you please tell me whether this wire is the same as the one on the other side?” (when wiring up electronics.) “Am I in the channel or not?” (faded green and faded red channel marker buoys look nearly identical to me.) “What a nice light blue shirt you’re wearing.” (the shirt was slightly pink.) So you see while color blindness comes with definite disadvantages, it’s got a few pluses too. You just need to know how to spot them and how to use them to your advantage.

    What It's Like for Me to Have Protanopia Color Blindness

    I hadn’t originally planned on writing anything here on this site. Nonetheless, I had been reading for some time and had found information on all kinds of conditions, common and rare, but literally nothing about a condition I experience, along with nearly 8 percent of men and 0.5 percent of women. It’s color blindness, more accurately known as color vision deficiency. What is it? Basically, color blindness is a condition which affects the colors you see. It’s not related to sharpness of vision at all. You can have 20/20 vision and still be color blind. It is also completely separate from visual processing disorders, which are a brain-based condition that affect what you see but not the colors in which you see it. In almost all cases, color vision deficiency is inherited, although some organic solvents such as toluene (a common ingredient in adhesives) can temporarily induce color blindness. (1) The most common cause of color blindness is a mutation in the gene encoding the cone of that color. Why are men more likely to be color blind than women? The most common form, by far, is red-green color blindness. This is encoded by a recessive gene on the X chromosome. If you’ve got two X chromosomes, you will need two copies of the color blindness gene to be affected. If you’ve got an X and Y chromosome, and if anything funny’s going on the X chromosome, you’ll have no choice but to express it, as there’s no other X chromosome to overwrite the error. The Y chromosome doesn’t carry any genes related to color blindness. Are you at risk? By far the most common form of inheritance pattern for red-green color blindness is affected males and carrier females. If you’re a mother and your father was color blind, then half your sons can be color blind too. If those sons have children of their own, all the daughters will carry the color blindness gene, but none of your grandsons will be color blind. Blue color blindness is inherited the same way as cystic fibrosis and other recessive conditions. Are there many forms of it? Indeed there are. Generally, it’s divided into red-green and blue-yellow colorblindness: Red-green: Protanopia: This is a loss of the red cones and is the form I have. About 1 percent of men have this. Deuteranopia: Loss of the green cones. Also experienced by 1 percent of men. Protanomaly: Here, you’ve got three cones, but the red one doesn’t work quite the way it should. This leads to slight weakness seeing red (for example in dim lighting), and affects 1 percent of men. Deuteranomaly: Similar to the above but with a weakness in the green cones. This is the most common form of color blindness, affecting around 6 percent of men and .4 percent of women. Blue-yellow: Tritanopia: Loss of the blue cones. This is very rare, and the “female advantage” doesn’t apply here. This gene is on chromosome 7, and therefore affects both sexes equally. Tritanomaly: This affects the blue cones and affects around 0.01 percent of people. (2,3) It’s also possible to lack cones entirely, which leads to grayscale vision. This however is very rare. What’s it like to be color blind? It’s actually quite interesting. While I can’t exactly speak for those who experience deuteranopia or one of the other forms of color blindness, I can speak from my experiences. I personally cannot distinguish between red text and black text or distinguish pink from various shades of blue. Same goes for purple; I can’t distinguish that from blue at all. But the most famous case is my complete inability to distinguish green and orange (it all looks orange to my eyes), which may seem rather inconsequential until you consider things in the woods meant to be seen are typically bright orange (think chainsaws, flagging tape, hunting uniforms…). It also means there are a good many occupations into which I cannot enter. These include pilot, fireman, policeman, and ship’s captain, for example.While that hasn’t exactly been a personal problem, as I’ve never had any desire to enter these fields (I’ve stuck to scientific research), there are other things I do from day to day where distinguishing colors is important. Think about graphs, for example. How do most people keep categories apart? By using colors, of course. Certain colors are fine, but others aren’t, so sometimes I have to ask somebody to interpret graphs for me. pH indicator paper can also be a bit of a challenge; I am not very capable of distinguishing between acids and bases without some outside help or a pH meter. Whenever I do a titration, I always do a rough run first, just to make sure I know what I’m looking for. For example, it is said that phenolphthalein (a common pH indicator), changes from colorless to pink to purple, but that is meaningless to me. Instead I’ll see the indicator go from colorless to grey to red to dark blue. Arguably the most dangerous characteristic of my color blindness, however, is difficulty (note: I said difficulty, not impossibility) distinguishing traffic lights, especially at night. The red and the yellow lights look nearly identical, and the green light looks nearly identical to that of an LED street light. Thankfully, I can take public transit most of the time in the city, and driving in the country at night is not a problem, so some minor behavioral changes can make all the difference.A more humorous instance of where color blindness may become apparent is not knowing whether a hat’s green or brown (as a result, buying matching clothing could be interesting…), or the last time I marked my students’ lab reports with a black pen instead of a red one by accident! Be aware that for many people, including myself, the exact perception of color depends on how it’s displayed. I might be unable to distinguish two colors if they are shown on-screen but have no trouble distinguishing them when they’re printed. Or I might be able to tell that a stop sign is red but be unable to distinguish between a red and a black pen. If you want a rough approximation of what it’s like to be red-green color blind, try removing the magenta cartridge from your printer, and go ahead and print a picture. References: A. Cavalleri, F. Gobba, E. Nicali, V. Fiocchi. Arch. Environ. Health. 55, 399 (2000) R.W. Pickford. Nature. 160, 335 (1947) Kalloniatis, Michael; Luu, Charles (July 9, 2007). “The Perception of Color”. In Kolb, Helga; Fernandez, Eduardo; Nelson, Ralph. Webvision: The Organization of the Retina and Visual System. PMID 21413396. We want to hear your story. Become a Mighty contributor here .