Lisa Goodman-Helfand

@lisa-goodman-helfand | contributor
Lisa Goodman-Helfand is the author of “Does This Hospital Gown Come With Sequins? (and Other Questions I Asked During My 218-Day Hospital Stay).” She writes and speaks professionally, providing a patient’s perspective on healthcare. Lisa’s personal story has been featured by reporters from Yahoo!, People online, CBS, NBC, ABC, FOX Chicago and the Chicago Tribune. Her medical journey has also been covered by online media around the world. For details, visit

What to Do When Ostomy Makes Noises

We all carry around extra baggage. Perhaps you were bullied as a kid, endured a painful childhood, never felt secure with your appearance, or struggle with assertiveness. But enough about me! In truth, everyone has something they’d rather not own up to in public. Especially, when it comes to farts… “Ew… someone just farted!” As a seasoned elementary school teacher, I am no stranger to this familiar proclamation. The problem for me is that I’m often the one responsible for the farting noises. As a reading specialist, I work with small groups of students in a tiny room — not the ideal setting to muffle the noises my body involuntarily generates. The sounds that come out of me could put any whoopie cushion to shame. What’s worse is that I’m not really farting. It is physiologically impossible for me to pass gas. Try explaining that to a group of giggling fifth graders. Like hundreds of thousands of Americans, I live with an ostomy bag. Before May 2006, I had never heard of a colectomy. Imagine my shock when I woke up from emergency surgery to learn that my colon had been removed and I was involuntarily pooping into a plastic bag attached to my abdomen. It wasn’t until a year later, at age 32, when I really began to wrap my head around the fact that I was going to deal with a “poopy bag” for the rest of my life. This meant living with a constant and very noisy companion that screams for attention at the most inopportune moments. Basically, my stoma (the tiny part of my intestine that protrudes outside of my abdomen) drains liquid poop into a plastic pouch any time it feels like it. This can produce flatulent noises that are very difficult to ignore for even the most polite adult. Other times, my stoma generates loud gurgling noises akin to a drain that’s just been unclogged. When these embarrassing sounds escape, I have a menu of canned responses I can select from: Option #1 (tell a lie): “Oh, excuse me, my stomach is growling, I forgot to eat breakfast this morning.” This is typically met with a weak smile that’s betraying the person’s body language which reads: U h huh, sure. Option #2 (tell the truth): “Sorry, my stomach makes weird noises because I don’t have a colon. The good news is, I’m not really farting, so no need to anticipate a foul odor.” I only say this to people who already know about my surgery, as this would be an odd thing to say to a stranger or acquaintance and I already feel like I come off weird enough. Option #3: Ignore the fact that I’m a human fart noise machine and just pretend I didn’t notice. The reality is, none of these choices are ideal and it sucks to feel so out of control. It also sucks to walk around “farting” into a plastic bag, always worrying I smell because my ostomy bag might leak, or looking as if I’m pregnant (but only on my right side) when my ostomy bag fills up with air. But you know what sucks more? Dying. If doctors hadn’t performed my emergency colectomy , I would have died at age 31, leaving behind my newborn daughter and 3-year-old son. When a nurse came in a few days after my surgery and said, “Lisa, a portion of your colon, the stoma, protrudes on the outside wall of the right side of your abdomen and drains output into your ostomy appliance.” All I could think was: Oh my God, my colon is sticking out of my stomach? And why is this woman speaking in euphemisms? “Output will drain into your ostomy appliance?” Why can’t she just say, “Liquid poop is going to involuntarily spill into this giant bag of poop that will be attached to your stomach with a sticky wafer?” What kind of voodoo quack sadist doctor developed this procedure? Did one day someone say, “Hey, how about we slice out peoples’ major organs and attach a bag to their bellies so liquid crap can empty into a nifty plastic bag.” Ten years later, I’ve accepted my ostomy bag as my constant, noisy, life-saving companion. Many people who face a colectomy (whether it be due to colon cancer, Crohn’s disease or other medical conditions), say they would rather die than live with an ostomy bag. My surgery was an emergency, so I wasn’t given that choice. But if I had been faced with the decision, I know I would have chosen a bag over a burial. Sure, it’s embarrassing to walk around sounding like a seventh grade boy who’s winning an armpit farting contest. Yes, it stinks to wear granny panties and select clothing that best conceals my bag. No, I don’t enjoy being stopped in every airport security line because my bag shows up on the X-ray machine and I’m suspected of being a drug smuggler. Still, even on my worst days, living with a bag sure as hell beats dying without one.

Owing My Life to Nurses After a Long Hospital Stay

Miss Colorado Kelley Johnson recently performed a monologue about her nursing career during Miss America’s talent competition. Comments by “ The View” co-hosts about Johnson’s nontraditional choice have shed light on the lack of credence and respect nurses are given. Rather than attempting to interpret the intent behind careless remarks, why not funnel some attention toward the exceptional talents that nurses demonstrate each day? I’m not a nurse, but I owe my life to them. After the healthy birth of my daughter in 2006, I suffered grave complications that led to a massive infection. I spent 218 consecutive days in the hospital. During that time, I lost my colon and spleen, underwent eight major surgeries, two tracheotomies, temporary paralysis and faced a myriad of other obstacles that brought me to the brink of death at age 31. The nurses who cared for me are some of the most empathic, devoted and selfless individuals I’ve ever met. I’ll be the first to say that several of my nurses weren’t the most stellar individuals. I’ve written and spoken extensively regarding the callous treatment I received from a few medical professionals and how it adversely impacted my health. There will always be those whose words and actions poorly represent their profession. Miss Colorado’s monologue conveyed the vital differences nurses make in the lives of their patients. As a nurse herself, she spoke from the heart. Her performance wasn’t a glitzy showstopper, and her nursing scrubs weren’t the sexy garbs typically donned by contestants. Rather than applauding the substance of her speech, she has been mocked and told that nursing is not a talent. I speak from vast experience when I say most nurses display more talent than we can ever quantify, much less judge. For months, I was held hostage in a hospital bed, unable to speak, eat, drink, breathe unassisted or move. With no mode to communicate, I spent my days in tremendous pain, locked away with thoughts of my newborn daughter, toddler son and husband. For months, I was delusional and forcibly restrained on more than one occasion. Everyone thought I had severed from reality and was unaware of my surroundings. I wasn’t. I remember almost everything, especially the care I received from nurses. For more than seven months, nurses were my lifeline. Aside from managing my intense medical needs, I was at the mercy of nurses to maintain whatever shreds of dignity I still possessed. From hygiene maintenance to shifting me in my bed, my fate hinged on the nurses who entered my hospital room. As busy as they were, many nurses looked at the photos of my children, asked me questions about my career, fluffed my pillows or spent a few extra minutes just talking to me. They devoted extra time to read my lips even though what I mouthed was typically indecipherable. I experienced terrifyingly vivid visual hallucinations. Often times, I thought my children had been kidnapped, or my husband was being murdered. Despite the fact that I had no means to communicate these realistic images, the nurses saw my desperate facial expressions and would comfort me. On more than one occasion, my airway became blocked. The calm and timely responses from nurses may have been the difference between life and death. Many nurses on night shifts witnessed my nightly ritual: Silently weeping until sleep came to me in fits. On one of those treacherous nights, my nurse met my gaze and said, “Lisa, you are unlike any patient I’ve ever had. You have a positive outlook and a fighting spirit. I know you’re going to recover. I want you to imagine yourself at home with your beautiful baby girl and adorable little boy. They need their mommy. Don’t give up, you’re a fighter!” I clung to her beautiful words even though I recall thinking, how in the world can this nurse see that I have a positive fighting spirit? I can’t even talk or move…she should see me when I’m not half-dead! Our lives depend on nurses checking vitals, changing dressings, dispensing medication, managing wound care and multitasking dozens of other responsibilities with competence. Nurses also foster hope, restore dignity, display compassion, listen, comfort, connect and inspire their patients. If that’s not talent, I don’t know what is. Follow this journey on Comfortable in My Thick Skin. Lead photo source: Thinkstock Images

Don’t Judge People With Chronic Illness by Their Appearance

When you look at these two pictures, what immediately runs through your mind? I’m guessing words like beautiful, young, healthy and vibrant were adjectives that popped into your head when you viewed the woman on the left. Does seeing the woman on the right conjure up words like sick, contagious, repulsive, ugly and scary? Our brains make snap judgments based on appearance thousands of times each day. How often do we stop and take a moment to reflect on those initial impressions and learn more before we judge? Chanel is the woman on the left and I (Lisa) am the woman on the right. Chanel and I have never met, but we began reading about one another on our respective blogs (Chanel’s “The Tube-Fed Wife” and my “Comfortable in My Thick Skin“), which depict our lives with chronic autoimmune disease. I hesitated reaching out to Chanel but finally built up the courage and sent her this message: Hi Chanel- I’ve known about you for a while, read your posts, loved your writing, admired you greatly, cried for what you go through…. but was terrified to contact you. Why? Because I felt tremendous guilt that I have lived with my chronic disease for 30 years, have two children, a husband, a career, and my disease is currently stable. How could I possibly have the nerve to contact you? I couldn’t think of anything to say that didn’t seem like I was throwing in your face that I’m fortunate to have a “better” diagnosis.” We are only in touch at all because you commented on something I posted. Please respond if you’re interested in talking. Best, Lisa Here’s what Chanel wrote back: Hi Lisa! Wow, first let me say how brave you are to write this, and express your honest feelings! I was completely speechless when I read your email, for a reason you may not believe! Lisa, you are so amazing! And I want you to know that your journey has inspired me many times! I started reading your blog from your very first post and was amazed by the trials you have overcome. I kept my distance because I felt you had endured so much more than me, and couldn’t possibly relate or want to talk to someone so young and inexperienced with disease! It’s so funny the perspective we build in our heads about others and their view on us! Let’s Talk Soon, Chanel Hi Chanel- Never in a million years would I have ever imagined you could feel that I have endured more than you! Besides, as I’m sure you’ll agree, it’s not a contest, and if it were, nobody would want to be the winner : ) Lisa During a brief phone conversation, Chanel explained that at the age of 20 , just a few weeks after her honeymoon, she became sick. Three and a half years later, Chanel’s disease has taken a catastrophic toll on her major organs. She suffers from serious vascular, digestive, respiratory and nervous system involvement. She has a feeding tube surgically placed in her abdomen, a central line in her chest, uses supplemental oxygen and is admitted to the hospital every few weeks. When I asked Chanel about her future, she said, “I’m going to take the punches as they come. Who knows? Maybe they’ll come up with a drug that will be my drug — the one that’ll work for me.” I am in awe of Chanel’s strength, courage and positivity. She has so much to teach the world. I almost missed out on the privilege of getting to know Chanel because I was afraid to reach out. The universe puts up enough hurdles for us. Why do we create additional barriers based on fear? How many times did you miss out on an opportunity to cultivate a relationship because you were afraid or thought you couldn’t possibly have anything in common? Chanel and I have a lot in common; we both suffer from the same autoimmune disease, scleroderma. We’ve been impacted differently, but we’re both warriors. We each thought the other was “worse off” and felt uncomfortable reaching out. How many cancer patients who haven’t lost their hair feel uncomfortable approaching a bald cancer patient? How many wealthy people feel the same way about approaching a poor person? Whether it be a difference in social status, religion, ethnicity, race or appearance, this scenario plays out in countless ways in our society. People like Chanel and me fight against misconceptions on a daily basis. Yet even we were guilty of allowing our own preconceived notions about the other to get in our way. I’ve learned many things by reaching out to Chanel, but perhaps the most important is not to use fear as an excuse. If we want people to get to know who we really are, we’ve got to be willing to do it, too. We should not discount what we have to offer someone else, even if we’re not going through precisely the same circumstances. It’s human nature to make snap judgments about people and gravitate toward people who look like we do, both literally and figuratively. Even so, the next time you meet someone who you deem too fat, skinny, old, young, loud, quiet, pretty, ugly or spotted, remember the story of the two faces you just read about. Think about the beautiful young woman and the weird-looking spotted lady, and then take another look: To learn more about Chanel’s life with scleroderma, check out her blog here. To learn more about Lisa’s life with scleroderma, check out her blog here. The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. If you’d like to participate, please send a blog post to . Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines.

8 Ways to Ask (and Not Ask) About Why I Look Different

A friend recently asked me, “Lisa, how do you want people to approach the fact that you look different? What exactly would you like people to do or say when they meet you and are interested in learning about your disease (scleroderma)?” I’ve gotta say, it’s a stumper! Humans are curious creatures. It’s natural and healthy to wonder why people vary from the norm either in appearance or behavior. I will attempt to answer this tricky question, but before I do, I must first give you a sampling of how I do not want people to approach the topic with me. 1. Blurting out, “What’s wrong with you?” or spontaneously asking, “Why are you sooooo skinny?” Don’t go up to strangers and ask them personal questions about their appearance. It’s weird when some random patron at the grocery store stares at my splotchy, mangled hands as we examine the produce and says, “What’s wrong with your hands?” This person is not invested in my well-being. Their inquiry is blunt and off-putting. My fantasy response is, “I’m allergic to weird strangers who ask me intrusive questions.” 2. Exclaiming, “Congratulations! Do you know if you’re having a boy or a girl?” I have super skinny arms and legs but a disproportionally large mid-section. Possible contributing factors are: the aftermath of eight major abdominal surgeries, distention caused by scleroderma, my ostomy bag inflating, or my affinity for donuts and total lack of willpower. 3. Asking, “Are you a witch?” 4. Pretending to not notice I look different when meeting me, but determined not to pursue a friendship with me because I’m weird-looking. It’s much easier to make a list of what not-to-do than to advise on the best way to handle this delicate situation. Through deep consideration, I devised the following guidelines: 1. Get to know me first. If you meet someone in a social situation and get to know them as a person, then I think it is perfectly normal to ask them a few questions about his/her altered appearance. I recommend framing your conversation in the context of genuinely wanting to get to know them better. 2. Ease the blow. It’s best to compliment someone first by saying, “You have gorgeous eyes, but what’s wrong with the rest of your face?” You’ve gotta soften the blow a little. 3. If I give you a clue, take it. I try to give people overt clues about my disease. This saves us both a lot of awkward dancing. I have a magnet on my car that says “Cure S cleroderma .” When I go swimming, I always wear a Scleroderma Walk tee-shirt over my bathing suit. The silver lining in not being able to wear a cute bikini is that my tee shirts allow me to raise awareness for scleroderma, conceal my purple and red spots, allow people who meet me to immediately know what I have and go home and Google it if they so desire. 4. Emulate this third-grader. I can think of no better way to describe how to approach me about my appearance than an interaction I had with a third-grader just this past fall. I had been working with this boy in a small group for several weeks. While dismissing the group, we had the following brief interaction: Third-g rader: Mrs. H, you’re beautiful! I mean really really beautiful! Honestly, you’re so beautiful, but I’ve been wondering, why are your wrists sooooo skinny? Me: That’s a great question and I must tell you I am so impressed with the way you asked it! I know I look different, right? So here’s the deal: I have a problem with my skin that makes it much tighter than most people’s. That’s why my wrists look so skinny. My skin doesn’t stretch as much as it should. Does that make sense? Third-grader: Yes. Does it hurt? Me: Sometimes, but I’m really used to it so it doesn’t bother me so much. Third-grader:  Oh. Like I said, you are really really beautiful, Mrs. H. Mind blown! This third- grader just masterfully steered his way through a complicated question most adults are uncomfortable asking. He followed my prescribed guidelines to perfection: -He waited several weeks and got to know me before asking me a personal question. -He expressed interest in my well-being. I must admit that I still don’t openly discuss my altered appearance with my kiddos. When a child asks, I answer with honesty, but I don’t bring it up. If I were truly fearless, I would ask my district if they would allow me to lead an assembly on “Embracing Our Differences.” I would boldly get up in front of the 600 students in my school and share my experiences in an age-appropriate presentation. I truly believe this would help our kids navigate these difficult issues that many of them face. Most cruel behavior stems from misunderstanding the differences that exist between us. I would like all you readers out there to weigh in on this. I especially would love to hear from fellow teachers, former students and parents. Please take a moment to make a comment below.

What I’d Change About the Way My Mom Treated My Disease

“I remember being so curious about your condition in high school, but too sheepish to ask you. You inspired many investigative diagnostic queries into my mother’s medical texts, and as a result, I learned a whole hell of a lot about many disorders, none of them being the correct one! I wanted to know what you were going through, what it was like to be you. Was it painful? Your ravaged skin seemed like it would be painful even to a tender touch.” This is an email I recently received from a woman I went to high school with 23 years ago. I had no idea she even knew who I was, as we never spoke to one another. Her words perfectly illustrate why I want to offer advice to parents of children who have visible or invisible issues that make them notably different from their peers. In 1985, I was diagnosed with scleroderma at age 10. My mother shared minimal information about my disease with me and told me not to tell anyone about it. I love my mom and am eternally grateful to her for raising me. But I do think she made a mistake in her approach to my disease. She had her reasons for her decisions, which she now readily admits were flawed. Like many parents, I think she wanted to deny there was anything wrong with her daughter. If she denied my disease with fierce devotion, maybe it would go away. My mom’s plan not to discuss my disease was half-baked at best, as demonstrated by the photos below. Here I am at age 10. This was taken just months before my formal diagnosis. Here I am at age 12. I’m not purposely posing with a bent arm to be trendy. My arm was permanently contracted in that position. It’s difficult to ignore such a potent physical metamorphosis. My disfigurement aside, there were so many things I couldn’t do that set me apart from my peers. The bottom line is that ignoring something does not make it less real. I was not equipped with the tools to accurately communicate information about my disease. It took me until age 40 to develop a solid and confident response to the whispers that have followed me around for the past three decades. Here I am at age 16. Notice my fabulous toothpick legs and super cool tree limb arms. Guys were banging down my door to date me. My advice to parents is to be open about whatever your child’s issues happen to be. Children take cues from their parents. If their parents are hesitant to openly discuss important topics, they will grow fearful of them and the “secret” will fester. Don’t underestimate the toxicity of secrets. Even my best childhood friends knew very little about my disease. Simple questions would trigger fearful tears from me, so they learned quickly not to ask. Before I became a reading specialist, I was a fourth grade teacher. Each year, I had several students who fell into the “notably different from their peers” category. Some parents forbade the school to talk about their child’s differences with the class. They claimed that they wanted their child to have as normal of an experience as possible. These parents loved their children with fierce intensity and did not want them to be hurt by labeling or negative stereotyping. Of course, I respected their wishes and did not violate their request. Other parents were open to coming in and sharing information about their child with my class. My students sat on the floor in a circle surrounding the parent speaker and were given the opportunity to ask questions and learn. Sometimes the child wanted to be present for the conversation and even lead the discussion. Other times, the child chose not to remain in the room while the dialogue occurred. Over the years I had parents talk about autism, cerebral palsy, Tourette syndrome, ADHD, peanut allergies, hearing impairments and more. Without exception, these discussions led to deeper understanding and empathy from the students. I only wish I had been brave enough to start off these discussions by first telling my students about my scleroderma and explaining why I looked different. This remains one of my hugest regrets, as I think it would have brought comfort to so many of my former students. Parenting a child with an invisible or visible condition can present extraordinary challenges. Every circumstance is different and must be carefully considered by those who know and love a child best. Some parents may argue that they don’t want to call further attention to their child or cause them to feel insecure. I’m willing to bet that 99.9 percent of the time, that child already feels quite different. This is strictly based on my own childhood experiences and what I’ve observed in my 19 years of teaching children; I’m no child psychologist. If I could turn back the clock, I’d want my mom to do this: come into my childhood classrooms each year and talk to my peers about scleroderma. I think it would’ve demystified the rumors that surrounded me and allowed me to be comfortable in my thick skin decades earlier. My mom is a wonderful lady who has overcome tremendous obstacles in her own life. We’ve all made mistakes, and my purpose in sharing this is not to publicly shame my mother. Instead, I hope to convey the importance of open and honest communication about tough topics and maybe even change some parents’ approach to disclosing information about their kids with visible and invisible conditions. A longer version of this post originally appeared on Comfortable in My Thick Skin. Want to help celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Why I'm Revealing My Scleroderma to the World

There’s something bizarre about all of us. We all conceal our oddities in our own ways. Most of us get to choose when and to whom we reveal these peculiar dimensions of ourselves. I can hardly remember a time when I had the luxury of choosing. Regardless of whether I want to expose my abnormalities to the world, my physical appearance spills the beans. Warning: I’m about to reveal what my body truly looks like without the benefit of clothing (gasp). Don’t worry, no nude photos are coming your way. But if I’m really coming out of the “scleroderma closet,” I’m determined to come all the way out. The heavy makeup that cakes my face tells everyone I’m hiding something. Upon first glance, most people don’t know I’m masking a face scattered with large and tiny red spots, telangiectasia. These red dots and splotches splattered over most of my body are a symptom of scleroderma, the autoimmune disease I was diagnosed with at age 10. If someone who just met me were to glance at my neck, they might be able to detect the small scar in the center of my throat left behind when I finally had my tracheotomy tubing pulled out for the last time. Most people don’t notice the scar, but I see it all the time. If only it was still 1984, when turtlenecks were all the rage. Then there are my arms. I love Chicago winters because this season allows for my clothing to partially camouflage my skinny limbs that resemble bent tree branches. If my arms are bad, my hands are worse. I simply can’t hide my hands. Each permanently bent finger is sprinkled with telangiectasia (red spots), my own unique trademark. Next, there’s my stomach. Even with baggy clothing, it’s obvious that I’m trying to hide what’s lurking underneath the fabric of whatever shirt I’m sporting. I know many 40-year-old women who’ve had two children may not want to be seen in a bikini, but I promise I’m not just talking about a little extra flab. My midriff is a horrifying roadmap of scars and other surprises. With each scar lies a reminder of the seven months I lost while hospitalized. First, there are the C-section scars. These scars don’t bother me a bit; they remind me of my two most precious joys, my son and daughter. Just north of my C-section scare dangles my 9-inch ostomy bag, a constant reminder of the catastrophic emergency colectomy performed less than three weeks after the birth of my daughter. When I empty the contents of my ostomy bag, I try to block out the vision of my mother turning ghostly white and my husband looking as if he might pass out. These visions of my loved ones being told the 48 hours after my colectomy would determine if I lived or died still haunt me. I try to shut out the fact that my school’s administration had grief counselors on standby, just waiting to counsel my students and colleagues should the worst happen. Next are the really bad scars, like the 9-inch jagged scar that zigzags across my left lower abdomen and curves around my side. It’s a reminder of my darkest days. When I see it each morning, I can’t help but sometimes hear the stampede of the transplant and crisis team racing into the operating room in a frenzied attempt to save my life. I try hard not to picture my mother and brother reciting psalms over my half-dead body. Yikes! The above paragraphs are dark and heavy. It’s hard to believe, but I’m actually a pretty upbeat person. Take a moment and remember that I didn’t die and have made a remarkable recovery. Yippee! Let us now continue our delightful tour of my glorious physique. My legs are skinny (like I wonder if that woman has a tapeworm skinny) and dotted with more telangiectasia. Finally, there are my feet. I walk with a slight limp. After lying immobilized in my ICU bed for so many months, my feet hung like weeping willows. ICU neuropathy plagued my feet with an intense sensation of a thousand fiery needles relentlessly piercing them. I was often told I may never walk again. After nine months of rigorous inpatient and outpatient physical and occupational therapy, I’m thrilled to be left with just a small limp and neuropathy. After reading the above description, you may be wondering what the hell happened to me. My story is so complicated I could write a book about it — in fact, I have written a book about it. I’m an ordinary person who, with the support of hundreds, survived some extraordinarily bad crap. So why do I want to offer the public a glimpse into how I glide through life with my gorgeous face and smoking hot body? All too often women (and some men) allow themselves to be defined by outer beauty. Our feelings of self-worth shouldn’t be based on our appearance. With this blog, I’d like to explore a different approach to measuring our value in society. Instead of using our time worrying if we‘re too fat, too ugly or too whatever for the world to love us, why don’t we focus on more important issues, like how to be a nice person, make people smile or even work toward world peace. I judge myself and others based on outer appearance constantly. I’m no saint; I just think we all should try harder not to “judge a book by its cover.” I’m not claiming to be the ugliest person on the planet and hoping for your pity. I know there are people far less aesthetically blessed than myself out there. I simply take issue with our society’s obsession with outer beauty and want to combat that. On many levels, I’ve reconciled that my appearance does not reflect who I really am. I hope other readers can find comfort and inspiration in that. A version of this post originally appeared on Comfortable in My Thick Skin. The Mighty is asking the following: What’s one moment you saw your disability and/or disease through the eyes of someone else? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

People Who Illegally Parked in a Handicapped Spot

On an icy and frigid Chicago winter night at the indoor sports dome where I pick up my son and his friends from soccer practice, some lady was illegally parked in not one but two handicap spots. This parking lot is a chronic nightmare with parents dropping off and picking up kids simultaneously for practice. There’s always a bunch of children darting between cars sporting nothing but soccer shorts in subzero temperatures. Any civilized regulations regarding social conduct and parking lot etiquette do not apply at this sports dome. It’s every man, woman and child for themselves. Since I was temporarily paralyzed in 2006, I’ve been issued a permanent handicap placard for my car. I try hard to only use my placard when I genuinely need it. My doctor qualified me as disabled because: 1. I have neuropathy in my feet that makes walking long distances challenging and painful (it feels like running a marathon in stiletto heels that are three sizes too small). 2. Like most scleroderma patients, I have Raynaud’s syndrome. This means my hands and feet are extremely sensitive to the cold, and I experience piercing pain and purple fingers when exposed to the winter elements. 3. I went through almost a year of physical and occupational therapy to learn to walk independently. Doctors told me I may never walk again, so I’m thrilled to walk slowly with a slight limp. However, my balance is off, I have foot-drop and a funky gait. Walking on icy roads in the dark in my sexy orthopedic shoes is not a recipe for success. Without fail, every time I’ve gone to pick up from soccer practice, someone is either blocking access to the handicapped parking or people without placards have taken all the handicapped spots. A month ago, a woman in a fancy luxury car was hogging two handicapped spots. She was sitting in her car with the motor running. For the first time, I grew a pair and got out of my car to confront her. I put on my hazard lights, endured the biting cold and marched over to her hotsy-totsy car (I can’t really march, since ya know, I’m disabled, but I would have marched if I could). Here’s how it went down: I approached her car, and she rolled her window down a crack. Me: Hi, I see you’re parked in a handicapped space, but I don’t see that you have a placard or handicapped plates. Are you actually handicapped? No response from Miss Fancy Pants, so I continued. Me: If you’re not handicapped, can you please pull out of this spot? I am handicapped, and it is very difficult for me to walk long distances in the cold. The woman looked at me, sighed and said, “OK…” There was no sign of remorse or any hint of an apologetic tone in the two syllables she uttered. Me: “Thanks so mu—” her window rolled up before I could finish. She did back out, though, which allowed me to park there. Fast forward to a few weeks later. I’m again picking up from soccer, but this time, I couldn’t enter the area with the handicap spots because some dad in his oversized Land Rover was blocking off the whole area. I was wedged between cars that all wanted to exit the lot. I couldn’t move forward because Mr. Land Rover was blocking where I needed to go. I couldn’t back up because there was a line of angry soccer parents behind me. I tapped on my horn and motioned to the handicap placard dangling from my rearview mirror. Mr. Land Rover started mouthing and gesturing at me. I’m no lip reading expert, but the gist of what he was mouthing was, “I’m not moving!” We exchanged angry facial expressions as I kept motioning to my handicap placard. In the midst of this delightful exchange, a mom next to me who I’d only spoken to once or twice rolled her window down and politely asked me to pull a little forward so she could get out. I unleashed a rant and explained that I was waiting for the Land Rover to move because I needed a handicap spot. I went on to say something ridiculous to this unsuspecting mom, like, “People are not very nice here!” Harsh words, I know. Finally, Mr. Land Rover got out of his car and headed toward me. He looked furious. I rolled my window down and said, “Sir, I’m not trying to be difficult, but I am handicapped and I can’t physically walk long distances in these weather conditions. You are blocking my access to a handicap spot.” Mr. Land Rover pretended as if this was brand new information to him (like I hadn’t been wildly pointing out my handicap placard for the last few minutes during our vicious exchange). He sheepishly said something like, “OK, hang on a minute.” He walked back to his SUV and miraculously moved, allowing me to pull in. I found my son and his friends and delivered them all home. After my son got into the shower, I began to weep uncontrollably. The reasonable adult voice in my head said I was being absurd. I should not let a few jerks out there reduce me to child-like sobs. I couldn’t turn off the waterworks. It was as if Miss Fancy Pants and Mr. Land Rover had poked a bear of emotions inside me. Once they came tumbling out, I couldn’t stuff them back in. I was inconsolable and irritated with myself for being so upset. I’ve thought about this for a while and determined I was justified in having such an intense reaction to two obnoxious people. During my encounter with Mr. Land Rover, everyone in the parking lot was honking at me to move. It was as if they thought I was purposely trying to be annoying and disruptive. Why wasn’t anyone honking at Mr. Land Rover? I only wish I had the capability to park far away and scale snow mountains to pick up my soccer carpool, like most parents. Why didn’t Mr. Land Rover understand that? Even after a year of rigorous physical rehabilitation, I was still told I may never drive again without adaptive devices. I had to take a four-hour driving test and undergo three hours of cognitive testing to earn back my driver’s license. I wish there was some way able-bodied people who take or block handicap spots could appreciate that. I try not to feel sorry for myself too often, but that night, in between sobs, I wallowed in self-pity. I lamented over the fact that everything I do is so much harder for me than for most. I can’t even open a bottle of water independently! As I’ve said before, sometimes we need to take a dip in the pity pool. Most days, I realize how lucky I am. It takes a lot to catapult me into uncontrollable weeping. So, to anyone out there who has ever parked in a handicap spot illegally, please don’t do it again. To all of you law-abiding citizens, thanks. No matter which category you fall under, please share this one for the people out there who aren’t lucky enough to walk from their car and ask Miss Fancy Pants to move. This post originally appeared on Comfortable in My Thick Skin.