Birth Defect

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    Community Voices

    This past weekend - Friday June 24th - I got to see Halsey at the Shoreline with my two best friends. To be clear, Halsey was AMAZING! But the venue was shitty...

    I was prepared. I brought my handicapped placard and researched the venue before going. I purchased tickets online that said handicapped accessible tickets with a companion so I got the seat with a handicap and companion seat and also the seat next to the companion - three tickets in total. A week before the concert I checked again to be sure there was handicap parking and indeed it said handicapped parking available.

    The day of the concert we got to the venue, and parking was a mess. We asked eight parking attendents where handicapped parking was, and they just pointed - and didn’t say anything. We finally parked but it wasn’t handicapped parking. The parking lot was uneven and gravely and not paved, which is kinda difficult when you're in a wheelchair. We got out of the car to assemble my wheelchair.

    We had to walk a little ways to get to the venue. On our way over, we saw the parking lot where all the handicapped parking was. Austin asked one of the staff members if we could park there and she said yes just ask one of the shuttles to shuttle you back to your car and put his hazard lights on. But, once Austin got his car but yet another staff member said he couldn’t park there, and made him go back to his original parking spot. It was confusing and disorganized, as if people at Shoreline aren’t used to disabled people coming to concerts with their friends at all.

    If people get treated like I did, that’s kind of not surprising.

    We got to the venue and they wanted to do a bag check - including looking at the bag where I carried my catheters. It seemed like too much of an invasion of privacy, so I left the bag in the car… It turned out that the bathrooms (porta-potties) weren’t wheelchair accessible anyway… even though they were supposed to be.

    We got to the gate to scan our tickets. I asked where the accessible section was. They just pointed and said on the other side of the theater. It turned out that the seats we had that were supposedly handicap accessible …weren’t. My friends Austin and Brooke talked to one of the staff and told them the situation. The staff member looked obviously irritated, pulled all three of us aside and radioed her supervisor. Austin was still talking to the staff member still telling her the situation and then she made a finger gesture telling him to be quiet.

    Her supervisor came and after hearing the details, she looked at me and asked, “Can you walk down eight steps?” I said no. Then she asked “What if one of your friends carried you down?”

    I …couldn’t even believe they asked me that. I was born with a birth defect. I have spina bifida. My spine was formed outside the skin, and my nerves weren’t formed in my legs. Right after I was born, doctors had to put my spine back into my body. I can’t feel below my knees, so I'm paraplegic. I don’t expect strangers to know my whole history but… I was in a wheelchair and I bought handicap accessible tickets. Why was she asking me that?

    I turned and looked at Austin and Brooke and I just shook my head.

    The staff lady rolled her eyes and sighed. Then she said, “Let me see what I can do.

    Eventually we got to our seats, and they were accessible, but they were segregated off in the corner.

    And I don’t know how I feel - maybe disappointed? It's a RARE moment when I’m feeling really good about navigating as a disabled person in public spaces. It is also RARE to get to hang out with my best friends. I go to dialysis three times a week, and right now I don’t work, so the tickets were an expensive treat. Most of the time I’m feeling tired and sh*tty, but on Friday, I felt good - it was going to be a good night.

    And Shoreline ruined it.

    …But Halsey was AMAZING!

    Evelyn Donato

    The Pain of Watching Friends Drift Away After Becoming Chronically Ill

    Since 2005, my full-time job has been managing my health. If it were my chosen career, I’d be considered an undeniable success story since I’ve risen up the ladder quite rapidly. But in this world, managing chronic illness and pain doesn’t win you any promotions or accolades. It’s an often isolating experience. I was born with a congenital birth defect of my pancreatic duct and a gene mutation which led to chronic pancreatitis and the eventual removal of my pancreas, gallbladder, spleen, duodenum, and part of my stomach. As a result, I have a myriad of health issues including diabetes, gastroparesis, GERD and bile reflux, small intestine bacterial overgrowth, difficulty digesting vitamins and minerals, and chronic pain. The trajectory of my illness has been riddled with ups and downs these past 15 years. It’s impossible not to draw corollaries between my health and my personal and work lives since they’re intricately woven together. Before I became ill, I worked full-time for a national non-profit organization, which meant I put in long hours and traveled on a regular basis. I was also doing freelance writing on the side and finishing up my undergraduate degree. I was newly remarried, my elderly mom was living with us, and we’d recently become foster parents to a 10-year-old girl. I was part of a group of close friends who spent a lot of time together – going on vacations, celebrating holidays, watching Super Bowl games, hanging out on the weekends. One couple even acted as godparents to my two kids while they were growing up. But, like so many who live with chronic illness and pain, my world became smaller as my disease progressed. It’s hard for those who are healthy to wrap their mind around what we go through on a daily basis. And when the illness is “invisible,” it’s even harder. By the time I had my pancreas removed in a 10-hour surgery in 2011, most of my friends had moved on. Those who had once been in my inner circle didn’t come to see me in the hospital (granted it was more than 500 miles away) or call in the 18 days I was there. Once home, there were no check-in calls or texts asking how I was doing or if I needed anything. The silence was deafening. It took me several years to truly understand that what happened with my friends was not malicious or intentional. It was the unfortunate by-product of change. It was the natural shift that occurs when people are no longer moving in the same direction. Like a road that reaches a fork, I went left while they went right. Being chronically sick also helped me to better understand the nuances of friendship. Up until then, I believed that friends who socialized a great deal, who traveled together, enjoyed holidays together, and hung out together were by nature “close” friends. But once chronic illness entered the picture, the friendships were not deep enough to withstand the changes they brought to bear. S. Kelley Harrell says: “Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.” As a culture, Americans do better with the finality of death. There are religious and cultural conventions for observing the passing of loved ones. People attend funerals or memorial events, send cards and flowers, make donations to the person’s favorite charity, and bring casseroles. There is usually enormous support for the first weeks and months after a death and often a more quiet acknowledgment among good friends for years afterward. But the same cannot be said about chronic illness where the “loss” isn’t final and the emotional agony is ongoing. There are no cards that acknowledge when an illness becomes a continual challenge unless, of course, it’s for a hospital stay or operation. There are no ceremonies for when that individual’s life is changed immeasurably. We simply have no rituals for the sustained grief that keeps on giving or the agony that becomes a way of life. Once I began having to routinely cancel plans; once I was no longer able to drink alcohol or share a meal; once I could no longer be as active as I had been when healthy, the natural consequence of these changes led to them continuing on without me. I became expendable because, after all, who wants to hang around someone who is always sick or in pain? As they drifted away, I felt an isolation and grief that was crushing. I blamed myself for losing friends who had been in my life for more than a decade. It didn’t make it easier knowing that most people pull away during times of crisis because of their own shortcomings and inability to handle the stress and limitations brought on by chronic illness and pain. Logically that made sense. Emotionally I was devastated, and watching my friends drift away was almost as painful as my illnesses. Fortunately, I’ve been blessed with a few long-term friends who have navigated my illness along with me. And there are those who have become friends since I became chronically ill. They don’t ask “Why?” They don’t wonder when I’ll be “cured” or “back to normal.” They are able to tolerate the unknown and sit with me in my grief and struggle, and celebrate with me in my joys. They were (and remain) my saviors.

    Community Voices
    Monika Sudakov

    'And Just Like That…' Episode 5: Coming Out in LGBTQIA Community

    Well, the sex has finally come back to the city and it’s not exactly what you expect. Before we continue, just another reminder that there will be spoilers beyond this point for “And Just Like That…” Season 1 Episode 5. Not up to date? Read Season 1 Episode 4’s recap. Carrie has been experiencing excruciating back pain, so Seema arranges for her to see her orthopedist cousin. The verdict…a congenital birth defect of the hip, which will require surgery. Charlotte springs into action, arranging for all of Carries friends to rotate caring for her in quintessential Charlotte fashion — an excel spreadsheet. Meanwhile, Rose has decided to change their name to Rock, and Charlotte doesn’t know until the other moms on her school event committee mention it. When she confronts Rock, Rock casually says they posted a video about it on Tik Tok. During a meeting with school staff, Harry and Charlotte are encouraged to seek therapy, support groups and counseling to help them navigate Rock’s self-discovery. They are left feeling very unsure and confused. Miranda randomly receives a book from Amazon about quitting drinking which she thinks is Charlottes doing and complains to Carrie that Charlotte is being passive aggressive and judgmental. Carrie has her surgery and her recovery begins. While recording an episode of her podcast virtually (high as a kite on pain meds) she tells the “diaphragm story” about Samantha rescuing her in her time of need. Charlotte suggests she reach out to let Samantha know, which Carrie does. She and Samantha share a pleasant exchange that ends with Carrie telling her she misses Samantha and Samantha not responding after the dreaded three dots. During one of Miranda’s shifts watching Carrie, Che stops by to bring Carrie a microphone and some tequila. While Carrie sleeps, Che and Miranda get drunk doing tequila shots and have sex in the kitchen while Carrie wakes up just in time to hear/see what’s happening. Carrie needs to pee and can’t get Miranda’s attention so she pees into a Snapple bottle and spills it all over the bed. This ends up in an argument between a frustrated Carrie who feels let down by Miranda for not being there for her and a drunk Miranda who feels embarrassed. By the end of the argument Miranda admits that she’s miserable and has been forever. Carrie suggests she take a look at her drinking and when she asks about what happened with Che, Miranda admits that she’s never felt like that before and isn’t sure she wants to give that up. Later, while Miranda is listening to Carrie’s podcast and fixing herself a cocktail, she gets an Amazon review alert for the book about quitting drinking that she received and realizes she drunk ordered it. This was the wake up call she needed to throw away all of the booze in her house and give up drinking. Charlotte confesses to Carrie that she’s concerned she’s not handling the situation with her child well and says she isn’t sure what to do or believe, but she just wants to make sure they do it right. She also shares a moment of sorrow at the idea of losing her daughter. Carrie reassures her that no matter what she’s a good parent and will do the right thing. Carrie begins her six weeks of PT, “and just like that…three months later (she’s) back in heels.” Let’s break down some major themes in this episode: Sex in the kitchen If Twitter and LGBTQIA Facebook Pages are of any indication as to how important this episode was in the arc of both Miranda’s character, who has thus far behaved somewhat like a shell of her original feisty self, and in the representation of the LGBTQIA community — things kind of blew up. There was no denying the chemistry Che and Miranda, aka “Rambo” as she was affectionately nicknamed by Che, have had since their first encounter. We have known that Miranda has been in a sexless marriage since the last episode and of course actress Cynthia Nixon herself has been married to her partner Christina Marinoni since 2012. So to say that there was some anticipation regarding Miranda exploring her sexuality would be an understatement. The scene itself was indeed rapturous. But…it was also cringeworthy because of how it happened. The circumstances of it being in Carries kitchen while Miranda was supposed to be caring for her friend was kind of anti-climactic and dampened by the fact that Miranda is in fact still married to Steve and has now cheated on him. It left me with mixed feelings, and I think that’s what the writers intended. I do hope that for Miranda’s sake she continues to explore her sexuality and I think the actors themselves (Sara Ramirez and Cynthia Nixon) have amazing chemistry together on camera. Alcoholism This plot line was not surprising. It’s been building and I’m not shocked it blew up in Miranda’s face the way it did. I do hope that as the story evolves they focus more on the why rather than on the drinking behavior itself. The scene between she and Carrie after the kitchen sex scene was powerful. You can feel the shame, discomfort and self-loathing Miranda is experiencing. Her pain is palpable. When Carrie asks her why she never said anything, Miranda replies “What would I say? That I don’t want to be this person anymore? That this isn’t enough? That I want more?” to which Carrie replies “That’s exactly what you should say.” And even in that moment as Carrie suggests she take a look at her drinking, Miranda blows it off, trying to justify it as just something that got a little out of hand during COVID. It isn’t until that moment in her kitchen when she realizes she ordered the book about quitting drinking that she truly understands this is a problem. It will be interesting to see how Miranda faces the challenge of being sober while trying to address the underlying struggles that she’s been dealing with. Navigating parenting an LGBTQIA child I admit that at first I had a negative reaction to the way Charlotte and Harry respond to Rose wanting to be Rock and change their pronouns to they/them. I thought they weren’t taking it seriously and were overly concerned with it just being a phase. Having known numerous friends whose children have come out as transgender, gender fluid or gender non-binary, I guess I have a biased template for what I perceive that transition to look like for both parents and children. However, after re-watching the episode and discussing it with my husband, I think perhaps I was being a little harsh on them. I don’t think that they are unwilling to be supportive. I just think they are grappling with what the best way to support their child is. I also think that perhaps their mourning the idea of having a daughter isn’t as uncommon as I’ve seen. As Charlotte says toward the end of the episode, they should just listen to them and follow their lead. Hopefully as Rock continues to solidify their identity to themselves, Charlotte and Harry will become more comfortable and confident and ultimately be their biggest advocates. Honorable Mentions In the lunch scene at the hospital between Miranda and Che, there’s a brilliant discussion about how the body responds to trauma that was straight out of Bessel Van Der Kolks The Body Keeps the Score. Che describes how she had horrendous diverticulitis before she came out but once she started living authentically her symptoms disappeared. She says that shame made her “physically and emotionally constipated.” It was refreshing to hear this described as so few people seem to understand how intricately the body and mind are interconnected and how when we are experiencing any kind of trauma it will ultimately find its way into our bodies on a cellular level. How will Charlotte and Harry navigate Rocks self-discovery? What’s going to happen to Miranda? Will she and Steve stay together or is there a future for her with Che? Stay tuned.

    Community Voices
    Aneja

    I'm new here!

    Hi, my name is Aneja. I’m new to The Mighty and look forward to sharing my story. I had open heart surgery October 25, 2021. I had a aynursm in the arotia ascending to my heart. My valve was also replaced as I had a birth defect. A bicuspid valve which caused the anyusm to happen. I am looking forward to talking.

    #MightyTogether

    #Anxiety

    #Depression

    #Migraine

    #PTSD

    6 people are talking about this
    Community Voices

    Embracing Your Child's Birth Defect

    For every parent of a child with a birth defect, there is a before and an after. Whether the line is drawn in the darkness of an ultrasound room, in the silence of a NICU nursery, or in the bustle and shock of an ER, it is there for each one of us … dividing what was and what is. My line appeared suddenly, seven years ago, when a chatty sonographer stopped talking and started measuring. Humans are supposed to have four heart chambers, apparently. Who knew? Most people like to keep their great arteries untransposed, as well, but my son Malcolm has always done things differently. He doesn’t spend a lot of time stressing about little stuff, like his Hypoplastic Left Heart Syndrome. There are more important things to think about. Trains. Hot Wheels. Minecraft. Like most parents who have unexpectedly had to deal with their child’s birth defect, I spend a lot more time considering the minutiae of his strange, weird, wonderful body than he does, and that’s the way I want it. He doesn’t need to waste any mental energy worrying about medical breakthroughs, or sitting down with school administrators to craft 504 plans. He bears the physical burden right now, but I’m holding onto the mental one for him. We moms of medically fragile children have strong arms and large vocabularies. We have to. And before? Honestly, I can’t remember before. All that has happened since that before-and-after line was drawn has colored everything on the other side anyway. Not in a bad way. It’s just that when your life completely upends and the kaleidoscope finally settles, you start doubting the staying power of that other paradigm anyway. For me, living with the reality of Malcolm’s birth defect has been more about reality solidifying than reality crumbling. Life has always been unpredictable, out of my control. Love and suffering have always gone hand in hand. I just didn’t know it, yet. Now I do. I don’t regret much about the before, either. I like who I am now. I like who I’ve had to become. Before, little things bothered me. Before, I knew I would die if something bad happened to me. Now, I know my own strength. I can survive a lot. I like who my son is, too. What most people don’t understand is that you cannot separate a person from what they’ve gone through. There is no Malcolm unless there is also congenital heart disease, and 20 surgeries and pain. Almost from conception, his heart has been wonky. So what? That’s part of who he is. The most important thing new parents should understand is this: normality is a myth. There are no “normal” kids. Each one is different and divergent. Health itself is largely mythical, too. What makes one child more healthy than another? Physical perfection isn’t everything. There are ways for a kid to be healthy that have nothing to do with the fragility of his or her body. Health can be measured simply by how happy a child is, or how loved they are. Health can be assessed by how supportive the family is, or how many opportunities the child has to grow and learn. Malcolm’s happy temperament and optimistic outlook have been polished and refined by more hardship than most adults experience in a lifetime. His scars are but battle trophies; his soul is whole and beautiful. He is a light that shines for all to see, because his experiences have made him transparent and open. I know how to value a gift like that. For every parent dealing with a birth defect, there is a before and after. Let go of the before. Living with your child’s condition is hard, but it is worth doing. Embrace your child, defects and all, just as they are. Embrace the after.

    Matt Flick

    Experiencing Employment Discrimination Because of My Disability

    One year ago, my world completely changed. On March 13th, 2020, I left my job for what would be the last time. I was informed I was furloughed due to the COVID-19 pandemic. I was told my furlough would hopefully only be about six weeks. Six weeks turned into six months. Six months turned into a year. I know this is a common story. I know I’m not alone. What makes my story different is that I am unemployed and disabled. I was born with a birth defect, spina bifida. I have limited feeling and limited mobility below the waist. I use a combination of crutches and a manual wheelchair to get around. When I was born, the doctor told my parents I would likely never walk and would have an intellectual disability. So I consider myself lucky in some respects. This was not the first time I’ve had job woes. Like most people in the disabled community, I’ve always had problems getting a job. According to the Bureau of Labor Statistics, the employment rate for disabled people was 17.9% in 2020. Compare that to 68.1% for non-disabled people. I’ve applied to thousands of jobs. I’ve gone back to school to improve my skills. I even contacted my local Vocational Rehabilitation office. This is a state-run organization that helps disabled people with job training and placement. My counselor told me I was making a decent amount in disability benefits and I should continue. According to her, it was just easier. This was someone whose job is to help me transition out of the system. Of course, I’ve had some interviews, but they always ended with the same result. The interviewer would see my crutches and immediately some issue would arise. The duties connected to the job changed and I was no longer qualified. A day before the interview, I’d be informed the position was already filled. Despite the fact that I drive, the commute would be an issue. I was offered the job and then the offer was rescinded. I’ve been given so many excuses why I wasn’t hired. Due to the rejection, frustration and uncertainty, I developed anxiety and mild depression. After many years, I thought my luck had changed. In 2017, I was offered a part-time job as a graphic designer. I was happy to finally get paid doing something I love. It was part-time, but I was assured full time was in my future if I wanted it. That never happened. Then the pandemic hit. On a Monday in March, I was told to not come in the next day and that was it. For the last year, I’ve been stuck at home, waiting. Sending out application after application. I’ve had a few virtual interviews. One even went through a few rounds, interviewed by a variety of departments including Human Resources. Since the whole process was through Zoom, and I was only seen from the shoulders up, I mentioned my disability to HR. I was assured it wasn’t an issue. Then, as was the pattern, I was left wondering. I made several calls to find out my status. The calls went unanswered for six weeks. I finally received an email that they had hired someone else. Legally I didn’t have to disclose my disability. I only mentioned it for full disclosure. For my honesty, I feel I lost another opportunity. I’m disabled. My legs do not work like able-bodied people’s legs. That is it. I’m intelligent. I’m logical. I’m talented. I’m a problem solver. But, because of a genetic anomaly, I’m not given the same opportunities. I’m marginalized. I’m often an afterthought. In this country, people who receive social services are often considered a “burden.” Many of us do not want to be a burden. Many of us long to be productive members of society but are not given the opportunity, or we are told it’s easier to continue receiving social services. Easier for who? Spina bifida is not my disability. Society’s lack of inclusivity and accommodation is the real disability.

    Community Voices

    Need someone

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    How Surgery for Poland Syndrome Helped My Body Confidence

    I’m going to share with you all a very personal story that I haven’t shared with many people before. But I hope sharing it will help other people and bring recognition to a condition that many haven’t heard of. Growing up I knew my body wasn’t “normal.” When I hit puberty my breasts were an odd shape and size. My mum always said to me “all women’s breast are uneven, yours are nothing different.” But to me I felt they were different. My right breast was about two sizes smaller than my left and had a concave area at the top, but I just learned to live with it because all women’s breasts were different shapes and sizes. There were times I was teased for it. Never directly to my face; it was always behind my back or behind giggles and snide remarks. Particularly one pool party in year seven where we were all playing a game and I was joining in, until I noticed the attention was on my chest. I felt so uncomfortable I got out of the pool and promptly got changed. I tried to avoid swimming sports in high school, but I enjoyed swimming. My mum did buy me bathers that didn’t show my breasts as much, one had ruffles on the chest or pleating so when I got out of the water the bathers didn’t stick directly to my chest, so it wasn’t as obvious. I remember my mum making an appointment with a plastic surgeon with me, but after the first appointment we never went back again. It just cost way too much to be even thought about. Having grown up on a farm there were more important things to use the money on. My boyfriends would notice it when we first got intimate and I would have “the talk” with them about how “that’s just how I was.” I used tissues, toilet paper, shoulder pads or foam padding to fill the void in my bra. I could never wear low cut tops or bring myself to being topless in front of anyone. My cleavage just looked deformed from the concave effect in my chest. I was never someone for flings or one night stands as I was ashamed of my body, and the thought of having to explain that was just the way my body is, terrified me. Years down the track I was taken on as a BDSM submissive trainee. My trainer became curious about the reason my body was developed the way it was and did research online. One day she mentioned she thought it was something called Poland syndrome. Poland syndrome is described as: a birth defect characterized by an underdeveloped chest muscle and short webbed fingers on one side of the body. Short ribs, less fat and breast and nipple abnormalities may also occur on that side. Well, I had the breast abnormality, but not the short webbed fingers, and one side of my body was always muscularity smaller. Now I was armed with this information of what it could be I went in search of information. I started reading online all I could. I searched Facebook groups and came across a Poland syndrome support group. I actually made some connections with two lovely ladies who shared with me their knowledge and experiences of what they had gone through. I felt relieved that I wasn’t alone. One of the ladies suggested I speak to my doctor about getting a referral for reconstructive surgery with a surgeon she had used in Melbourne. She said she had hers done via Medicare and the only expense to her was if she required pain killers. Medicare would cover the costs due to it being reconstructive (medical) and not just cosmetic for looks. I had to wait four years on an elective surgery waiting listing through a public hospital until my name came up. By the time my name came up I was seeing a guy I had been with for two years, and he was supportive of me going ahead with the surgery. After meeting with the surgeon it was decided I was to get an implant in my right breast first, let that settle and then get a breast lift on my left. Although I was nervous about the operation I was also looking forward to it. The one thing I was looking forward to was about to happen. I was full of nerves and anxiety but it happened. After the surgery I wanted to get back into exercising, and I think I started back too early. The sweat which formed on my bra from exercising caused an infection. One which caused a hole where the stitches were and weren’t nice at all. I contacted the surgeon directly and voiced my concerns and asked me to come back for a check up. From there another surgery was arranged to cut the infection out and stitch it back up. This time I knew the importance of recovery time and allowing my body to heal. I tried so hard to let my body heal as it was meant to without worrying about getting back into exercise (as hard as that is). My scar is there however it isn’t visible unless I am upside down. Eighteen months later I get another phone call from the hospital. They were ready to do the breast lift on my left side. The night before was the whole no sleep, anxiety-riddled experience just like last time. The silly thing is we were on the way to the hospital and we received a call to say an emergency case came up and they had to cancel mine. Now I wasn’t upset about this. I was glad that my case could be rescheduled for someone who obviously needed my surgeons time more than I did. My surgery was then rescheduled for the following month. This time it wasn’t rescheduled and I was in and out if hospital over night. I currently have some great looking bruises on my breast and I’m hoping the scar will heal better than the one on my right side. Fingers crossed for no infections this time and I’m definitely not going to push my body back into exercise too quickly. Now I know my breasts won’t be exactly the same. The motto I have been using is “they are sisters, not twins.” But the first surgery did help me with body confidence. I’m hoping the second operation will only make it better. I look forward to wearing unpadded bras and feeling better in myself wearing the kind of cleavage showing clothes I have always liked or bathers without being worried about how it will cling to me when I get out of the water. To anyone out there who thinks they may have Poland syndrome please feel free to message me to talk about it. I am happy to point you in the right direction. Also anyone who would like to talk about breast implants or a breast lift, I have now had both so I would be happy to speak about this also.