UNDERSTANDING OCD: THE 5 ASPECTS WE NEVER TALK ABOUT

By Jenna DiLossi, Psy.D., NCC, LPC 

Center for Hope and Health
Ardmore, PA

Have you ever experienced thoughts that seem very strange or out of the ordinary? What about thoughts that you know are illogical yet still produce distress when they pop in your mind? Aside from being strange, do these thoughts ever scare you? Do they ever make you wonder if you are a horrible, dangerous person? Do you have certain behaviors or mental acts that you have to do, NO MATTER WHAT….even if they are inconvenient, take up a lot of time, and cause conflicts with your loved ones? Well, answering “yes” to some/all of the above-mentioned questions might indicate the presence of Obsessive-Compulsive Disorder (otherwise known as OCD). OCD is often portrayed in media as a quirky character (e.g., Monica Gellar, Monk, etc.), the punchline of a joke, or as an adjective used to describe someone who is anal retentive. Despite this portrayal, specialists understand that OCD is certainly not a joke, the sufferer is not simply quirky, and it is not synonymous with anal retentiveness. The reality of this psychiatric illness is that it can be debilitating and often causes impairment in many domains of a person’s life. The general public typically understands OCD in terms of contamination fears, excessive cleanliness or orderliness, counting, and superstitious beliefs. And while all of those aspects can be true for OCD sufferers, there are other domains within OCD that are less understood and kept quiet due to sufferers’ shame, embarrassment, and fear of being judged by others. Below are the top 5 aspects of OCD that are misunderstood and/or not discussed in the public:

1) The difference between obsessions and compulsions.

OCD is an anxiety disorder that is comprised of a cycle of obsessions and compulsions (also referred to as rituals). Obsessions are recurring thoughts, images, ideas, or impulses that are unwanted and intrusive. All of us have strange thoughts that pop into our mind, and these thoughts might be dark or make us think, “Wow, where did that thought come from? That was random and weird…moving on.” For OCD sufferers, however, there is no moving on and they do not chalk it up to randomness. They perseverate over the thought and become extremely distressed by it, regardless of their age, intelligence level, or ability to “know it sounds ridiculous.” The content that pops into the minds of OCD sufferers just feels real and is impervious is logic. Compulsions or rituals are strategies that sufferers use to make themselves feel better– to lower their distress and anxiety. Strategies could include overt behavior such as repetitive checking or washing, covert behaviors such as seeking reassurance or re-reading content, or mental acts such as repeatedly replaying the events of an evening or repeating special words to themselves. While it can sometimes be difficult to differentiate between these two components of OCD, doing so is very important in the treatment process.

2) Harm obsessions.

Harm obsessions are characterized by thoughts, images, ideas, or impulses of hurting oneself or another person. Examples of this type of obsession could include thoughts such as “What if I pick up that knife and stab my mother” or “What if I yell out a racist slur on the subway.” One of the biggest misunderstandings of this obsessional domain is that sufferers are not actually suicidal, homicidal, or aggressive at all. In fact, these obsessions terrify OCD sufferers. And while they begin to fear their thoughts and believe that they are a danger to themselves or others, they are typically the least dangerous people we know. Furthermore, sufferers might begin to avoid objects that could produce harm (e.g., knives) or interacting with other people altogether, as OCD convinces them that avoidance is the only way to ensure safety. Not surprisingly so, this obsessional domain is correlated with a lot of social isolation and depressive symptoms.

3) Sexual obsessions.

Perhaps the best-kept secret amongst OCD sufferers are obsessions that are comprised of sexual content. Despite being so under-discussed, this obsessional domain is extremely common in OCD. Sufferers might experience thoughts related to their sexual orientation, sexual aggression (e.g., rape), or pedophilia—all of which are NOT congruent with what they actually find sexually arousing or pleasurable. These obsessions typically produce an excessive amount of anxiety, shame, and embarrassment. Examples of sexual obsessions are as follows: “What if I am gay and I don’t know it yet;” “What if I just molested my niece when I changed her diaper;” “What if I raped someone last night when I went out and I don’t remember it.” Common compulsions for these obsessions could include repeatedly mentally reviewing the sequence of events, seeking reassurance from a loved one, or strict adherence to safety behaviors (e.g., only nodding hello as a greeting instead of hugging a loved on). Avoidance is also quite common here– again, to ensure others’ safety. Many OCD sufferers who experience these obsessions judge themselves harshly and believe that they are a terrible monster of a person (particularly in the case of pedophilic obsessions.) One of the first steps in sufferers’ recovery process is to learn that although these obsessions might produce a lot of shame and questioning of one’s character, they are merely a symptom of the illness and have no implications on their character.

4) Just right.

One of the most overlooked domains of OCD is the rigidity and incessantness of needing things to be “just right.” The reason this often goes unnoticed is because perfectionism runs rampant in Westernized culture. Many of us strive for perfection or like to do things in our special way that feels “just right.” In the case of OCD, however, this degree of perfectionism, orderliness, or rigidity become maladaptive and impairing. It can result in excessive tardiness, missed deadlines, or complete avoidance of tasks altogether. The OCD sufferer might spend countless hours re-reading or re-writing a term paper or even an email to a colleague to ensure that it is free from error or that they articulated their points in the most effective and efficient way possible. One might also spend hours cleaning and re-organizing the whole house before being able to sit down and begin math homework or keep putting off a decision about which paint color to choose because they might not have found the best one yet. This obsessional domain often feeds on an inherent feature of human life, uncertainty. OCD wants people to live in the world of absolutes and complete certainty, which is most often impossible. Many individuals with OCD experience reluctance to give up this part of the illness because they attribute their successes to this “thoroughness” and fear that they might become a “slacker” in the absence of these rituals. The irony, however, is that it often results in their biggest fears: a series of recurrent failures and incomplete tasks. Breaking this crippling cycle of perfectionism begins with learning how to tolerate uncertainty, mistakes, and “good enough.”

5) Religious scrupulosity.

Many people believe in a higher power, engage in religious rituals and traditions, and aim to behave according to their morals. Furthermore, it is true that plenty of these people find great fulfillment from their faith. Unfortunately, OCD can turn religion and morality from fulfilling to fretful. Scrupulosity is a domain of OCD that is characterized by a pathological level of guilt related to moral or religious issues—this can manifest in believers and non-believers alike. These individuals may find themselves preoccupied with fears about heaven and hell, spending the majority of their waking hours praying or reading religious script, or being terrified to act in an immoral way (e.g., ignoring a person in need or drinking alcohol). OCD often “attacks” what people care about most, so it is not uncommon for OCD to manifest in scrupulosity for those who care deeply about their faith or morals. While sufferers may still genuinely care about their faith at their core, religious rituals, prayer, and desires to follow the word of their faith become associated with a great deal of guilt and fear rather than joy and inner peace. Conquering scrupulosity does not mean that religion and morality are erased from one’s life, but rather that they can exist in a person’s life in a way that is rooted in peace and fulfillment rather than fear and guilt. This process may involve consultation from a clergy member.

Many people with OCD believe that they need their OCD to succeed or that their compulsions and avoidances are needed for survival and safety. It must be stated that OCD can be quite convincing to both sufferers and their loved ones, so it might often feel easier to just give into the cycle rather than challenge it. Challenging it will result in a lot of temporary discomfort, distress, and anxiety. And it will not feel pleasant to challenge it, but this is the way to recovery. Help is out there! OCD specialists exist and are trained in a specific form of Cognitive-Behavior Therapy called Exposure and Response Prevention (commonly referred to as EXRP or ERP) to help sufferers overcome this encumbering illness. This treatment successfully treats OCD symptoms by activating what makes it tick the most. Specialists will help sufferers break free from the chains of OCD by systematically exposing them to their biggest fears in the absence of compulsions. Although this treatment can feel difficult and frustrating at times, the gains can be life changing and incredibly empowering.

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Jenna DiLossi is a facilitator for Minding Your Mind and co-founder of the Center for Hope and Health in Ardmore, PA. Dr. DiLossi specializes in the treatment of eating disorders and Cognitive-Behavioral Therapy (CBT). She co-founded the Center for Hope & Health, LLC. (CHH), which is a treatment center that offers specialized evidence-based treatments for eating disorders and anxiety disorders. She formerly worked the Renfrew Center for five years, received specialized training on the most cutting-edge treatment, completed her doctoral dissertation on body image and perfectionism, and has been featured on Fox 29 to provide her expertise on the topic. She is currently practicing as a Licensed Professional Counselor in Pennsylvania, but is separately completing post-doctoral training through the University of Pennsylvania at the Center for the Treatment and Study of Anxiety (CTSA) with the intent to obtain licensure as a clinical psychologist. She completed two Master of Science degrees and a Doctor of Psychology degree from the Philadelphia College of Osteopathic Medicine. Throughout her doctoral training, Dr. DiLossi has gained experience with a variety of diagnoses and clinical issues from clinical placements at the University of Pennsylvania’s Center for Cognitive Therapy and Drexel University’s Division of Neuropsychology. In addition to her work at CHH and CTSA, Dr. DiLossi is also an adjunct faculty member in the Department of Psychology at Saint Joseph’s University.

Behind the Smile, by Michael Garuiccio

Let me preface this by saying, I am not writing this for any reason other than wanting to tell part of my story. I am not looking for pity, or social media responses. Simply, I want people to know that the truth can be misleading. That the people who look the most put together, can be the most broken. Mostly, I want to say what I have been feeling needs to be said aloud. Maybe it will resonate with someone else. Maybe it will not.

For those who know me well, mental health is an important topic for me. On the surface it would make sense, being that my roommate and good friend has survived multiple suicide attempts and has taken on advocacy as a vocation and profession. One of my close friends from high school died by suicide suddenly during our freshman year of college. So naturally, this issue has been close to my heart. However, unbeknownst to most I have struggled on and off with depression for more than a decade. So literally, this has always hit home for me.

In 2015, my roommate Drew attended a gala in New York raising money for his job, a non-­‐profit that does mental health education programs for young people across the country. When he returned from New York, Drew was blown away by what he had seen. The event, A Celebration of Life, was started by a group of fraternity brothers at Vanderbilt University who lost one of their brothers to suicide. To try and raise awareness, they threw a concert to raise money for mental health advocacy. Years later, as these men had grown into their careers and moved across the country, they had decided to turn it into a gala. The event had 300 young professionals come together in New York City and raised $125,000.

Drew had told me this, and said to me: “This is an amazing event, we can do this.” For me, it was a no brainer. I would do whatever I could to help Drew along the way. A Celebration of Life: Philadelphia was born. The months went by, and we began to see it come together. Sponsors, donations, ticket sales; the vision was becoming reality. We were incredibly excited for this amazing night that would not only raise money for our cause, but also would bring so many incredible people together to celebrate life (and party all night).

The night before the gala, I was out with some friends in the city. I had gotten to a bad place mentally, via alcohol. This had become a pattern for me at that time. Drinking and going out would be a vessel of hope for me. The possibility of making new friends, and meeting someone, was always exciting and made me hopeful of change regardless of my mental state.

Unfortunately, drinking began to open mental barriers I have developed over time to hold my anxieties and depression at bay. I would begin to fall into deep depressive states late at night after drinking, and over time it would grow into suicide ideation.

That night, I began to think about and dwell on the loneliness I had felt for much of my life. I sat on a street corner by myself in the night crying, feeling hopeless and not able to see change. I walked to a parking garage in the city, and climbed the stairs to the top. The same parking garage Madison Holleran jumped off of two years earlier. For whatever reason, I had always felt a connection to Madison. She and I had never met, but she died the same week my friend had. We were struggling at the same time, in the same city, for many of the same reasons. I was always walking in the city, out and about. I would wonder why we never crossed paths. Maybe we could have connected; maybe we would have become friends, maybe.

I stood at the ledge, looking to the street. Thinking on my life. Thinking of my struggles. Wanting to simply not be sad anymore. As I stood there, I began to think more of the change I was desperate for. For whatever reason, I made a phone call. I called a friend, who honestly today I cannot tell you who it was. They did not answer. I called another friend, no answer. I called one last person, at 4:00am. My friend Patty, at 4 o’clock in the morning, answered the call. Patty talked to me for what seemed like hours, though it was probably closer to 20 minutes. She got in her car and drove to pick me up. She took me to her office where in the early hours of the morning, she talked me through and developed a new plan to get my mental health on track.

I was worried now that I would not be able to attend our event, which was so important to Drew and me. After some sleep, I had come back to a manageable place. We had our event, and it was a great party that lasted deep into the night. We are now going into our third Celebration of Life:Philadelphia now having raised over $150,000 combined over the first two years.

I tell this story, simply because in a time in my life where I am struggling for much different reasons, I wanted to tell some truth about my past. That you never really know someone simply by surface. That pictures rarely tell the truth. That someone who looks so happy could have almost attempted suicide just 24 hours before.

Mike Garuccio blog

I hope that if you are struggling, you have the courage to reach out. I know I would not be here today, if many times over I had not reached out for help. I still struggle every day, but I have the tools to beat mental illness. I will always try to help and support those who need it, to the best of my ability. Whether it is through our advocacy work with A Celebration of Life, or simply a hug or phone call. Please know, there will always be someone who cares.

Always,
Michael

We Can All Do Something, by Carolyn

I just wanted to sincerely thank you again for visiting our school. I promise to use this momentum you have given me to make even more positive changes for my school. I’ve done several things this past year with mental health:

  • I found a curriculum created in Canada called “Mental Health and High School Curriculum Guide”. The process of implementing the curriculum was long, and I went through it mostly alone besides asking for advice from my school psychologist. I was in contact with a board member of the curriculum asking questions and forming a proposal when I pitched the idea to my principal. I annotated the entire guide, which was 167 pages, but all on topics I’m familiar with. We had a few meetings and through collaborating with the health teacher, the psychologist, and principal, we were able to seamlessly fit the 12-module lesson plan in our curriculum. So far the class has been going good, I’ll be able to sit in on the class next week and I hear students are actively participating!
  • I found Minding Your Mind and decided you needed to come to our school. I went through a similar process on researching, writing proposals, and having meetings until we were finally able to book a presentation.
  • I have more plans for the future, I need to find ways to fundraise because I have been told that my plans could cost money. Since May is Mental Health Month, I want to have events and really educate the people in my school.
Throughout this year I have found my passion in life, I never expected to be where I am now. Things were a lot different and much darker over the summer with my mental issues. Keep doing what you’re doing, man.
Carolyn

Beneath the Surface, by Carlie

The purpose of my club, “Beneath the Surface,” is to help those who face challenges that cannot be seen by the naked eye, to educate people about these hidden challenges, and to teach the power of empathy. I started this club because of my own experiences with pain disorders as well as mental disorders that are not visible to others. My mission is to raise awareness and promote compassion across hidden differences. 

I wrote this last year. It explains some of the struggles I faced and why I want to raise awareness for anxiety, depression, and other invisible illnesses. 

Sometimes the biggest smile contains the most pain. November 19, 2015 was the day I had my surgery. Before surgery I have never experienced a day in pain, but ever since then I have never completely healed physically and emotionally. I have lived every single day of my life in pain. Once in a while I’ll have a good day with my pain being at a 5/10 but more often my days last with my pain being at a 10/10. My pain varies from sudden severe stabs to long aching cramps, in my temples, my jaw, my base of my skull, my neck, and down to my shoulder blades. 

My surgeon, “Dr. L,” said to me, “This has never happened to me in the 30 years I been doing oral surgery, I don’t know what to tell you, but I’m never doing the arch bar technique again .” As a 16 year old, hearing that internally destroyed me. I think to myself everyday why me? Why was I the one my surgeon used as the Guinea pig by using arch bars for the first time? 

Pre operation, I had so much hope leading up to my surgery. Believing that it was going to turn out great and I would finally have a smile without a huge over/open bite (a bite I would finally be able to chew food with) and now all of that hope has been crushed within the past year. I have been to doctors in numerous states for my relapsed jaw and have gotten replies like, “I have to cut your jaw into 3 pieces to help you, but I can’t guarantee it won’t relapse again” , “you need a prosthetic joint replacement”, “you have cheerleader,s disease” (condylar resorption), “you have TMJ and need to get your condyles reconstructed”, “you should have had braces and been wired shut after surgery, that’s a surgeons error”. As well as professionals that have said, “this is a complicated case, I don’t know what I can do for you.” How is that ok? All doctors have been scared to touch me or try to help me because I’m the rare  patient that can relapse easily.

IT’S BEEN OVER A YEAR AND WE HAVE GOTTEN NOWHERE. I have been in chronic pain. It has taken away from my entire life. I never sleep. I toss and turn all night because my jaw and neck are in excruciating pain. And when I do finally get sleep, I’ll wake up in the middle of the night because I have nightmares of being in mid surgery. My anxiety level has became unbearable ever since my surgery. I have flashbacks to surgery because of my pain constantly reminding me that’s there is something wrong with me, and will have anxiety attacks because I don’t know what’s to come next. I can’t even do things like look down for more than 10 minutes, sit in a chair comfortably, chew, brush my teeth, put on makeup around my cheek area, or yawn without being in pain. I live on pain killers which I quickly gained a tolerance to. 

Oral surgery is not an easy recovery. Surgeons have carelessly told me, “I’ll just have to redo the oral surgery,” with no positivity it will work better than it did the first time. I am traumatized. Waking up from surgery looking/ feeling like I got hit by a bus, having 102 fever every other day, getting an allergic reaction to the morphine and having hives all over my body, throwing up blood, and not being able to walk on my own for two weeks because of the dizzy spells. People get upset when they don’t eat for two hours, imagine being on a liquid diet for over two months. In addition to the recovery process, it was so emotionally challenging for me to have my face reconstructed, going out in public and get weird looks like I have something wrong with my face. 

I have been positive for so long through the recovery process. However, it’s at the point I have been to all the best surgeons in the country and have gotten nothing but negative responses about my case. I spent three months, three times a week going to physical therapy and got no progress. Now, I go four times a week to the chiropractor and two times a week to an acupuncturist. They give me a small amount of temporary relief. So, I plan my schedule around my pain management doctor appointments. I can’t even last a full day in school! I can’t even ride my horse more than once a week! How could Dr. L look at me and say, “you’ll be ok,” after knowing everything I been through and everything he’s done wrong?

My most recent diagnoses is trigeminal neuralgia. It is a chronic pain disorder affecting the trigeminal nerve in the face. This is because of my bio-mechanical malfunction in my jaw. It was caused by my oral surgery/face trauma. Doctors today call this the “suicidal nerve.” This is known to be one of the worst medical conditions. If it wasn’t for my amazing family and chiropractor I wouldn’t have the smile on my face I use to hide my pain. My chiropractor is the first doctor who has been there for me and continues to constantly check on me and offering to help.

However, there are so many people in this world who have no integrity. Small comments hurt. By this point I’m just frustrated. People make fun of me for having to carry a rolling backpack in school (because my of my neck), by kicking it and saying, “nice suitcase” while laughing sarcastically. That’s bullying. You have no moral qualities if you watch me sit in class with an ice pack on my neck and having all my work on a book reader (because I can’t look down for more than 10 minutes without getting jabbing neck pain) and tell me, “I’m just doing it for attention.”  I have endured so many hurtful comments about my jaw and what I’m going through. I have had people say, “you’re being dramatic, it’s just a little jaw/neck ache, it can’t be that bad.” Other people have said, “I wish I had a medical condition so I can get into any college I want.” Growing up around people with no heart make me really appreciate how my mom has raised me. I know from experience that the people who are in the most pain tend to be the ones who are always trying to make others smile. And for the evil people out there who know who they are, it is not that hard to think before you say! Just because I have a smile on my face when you see me does not mean I am physically and emotionally OK. No one will ever understand my pain unless they experience it. I am thankful for the few true friends in my life who have been there as my shoulder to cry on. 

God gives the toughest battles to his strongest soldiers. Sometimes it’s hard for me to understand what God really wants to happen to me. And I will not always believe in the quote, “everything happens for a reason,” because what is the reason for the pain people suffer from around the world? However, I trust that God will put me where I am meant to be someday. And I know that through this dreadful experience I am growing. Everyday I act like nothing is wrong, and it’s simply called being strong.

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The author with MYM speaker Drew Bergman at the Ranney School in New Jersey

“What’s This?”

As a high school kid I remember learning about drug addiction in one short class by watching Requiem for a Dream and talking about the movie as a group. The teacher wanted his students to be exposed to the destructive effects of various drugs before we headed off to college, where problems with recreational drugs are much more present.

In addition the topic of drugs, I wish I had been introduced to the topic of mental disorders earlier on as well. Mental disorders such as depressive disorder, bipolar disorder, OCD or PTSD are unfortunately not too uncommon in today’s world. It affects 1 in 4 Americans. Depression, however, was not a familiar concept in my adolescent mind at all. I had never experienced such emotional condition, ever, until the second semester of my college freshman year, when the disease completely debilitated me. Without prior knowledge of any mental disorders back then, I couldn’t help myself at all – or even reach for any help from family, friends, or professionals.

Clinical depression was a strange and terrifying feeling. For weeks and weeks, I felt I was absolutely worthless and pathetic for every moment I am awake. Living was painful day by day. My mind slowed down noticeably and couldn’t recall simple information or finish complete sentences, especially in front of people. Every person in the cafeteria seemed to be making fun of me for no clear reason; eating became an unbelievably difficult task. So was taking a shower. The only place where I felt safe in the world was in my dorm bed under the blanket with my phone off and when I was asleep to escape reality. I was extremely afraid of any social interactions, in and out of classrooms. Every morning I thought how hard another day would be and couldn’t think of why I should continue to live. With my disorder, I fell down hard with no strength to stand back up by myself, searching yet desperately for some hope and reasons to live.

With immense help from my parents and friends, I then left college and went home on a medical leave. In midst of the chaos, a New York psychiatrist handed a piece of paper with my name and ‘Major Depressive Disorder’ written on it. What’s this? I had no idea what mood disorders were, never mind how to deal with one myself. Scared of the uncertainty, I thought I would be consumed by my disability forever with no chance at recovery. When I broke my clavicle from a snowboarding accident, it was also excruciatingly painful – but at least I knew what was wrong. It was clear that the broken bone near my left shoulder was the problem and that time would heal the fracture. On the other hand, I simply didn’t know what a mental disorder was, or how recovery took place, until I received a diagnosis myself.

When I recall that moment when I first heard I had ‘Major Depressive Disorder’, many thoughts rush to my mind. I remember how frightened I was – physically shivering with fear as I walk out of the psychiatric evaluation room – then how clueless I was for the next four months of clinical depression. My medical diagnosis then changed to a ‘Bipolar Disorder’ after I experienced symptoms of mania after my long and painful depression. What’s this? Another mental disorder I had no idea about or even heard of. I wish I had learned more about what mental disorders were before they were triggered in me. Knowing about the symptoms won’t prevent diseases, but it can certainly help accept and manage symptoms better by earlier treatment with more awareness in students, teachers, and parents.

In the personal journey of living with mental disorder diagnoses, I am slowly discovering more reasons to have hope and carry on through the struggle. One reason is to contribute to the open discussion of mental disorders and to educate about prevention and recovery. I wish there were times in my high school when, just like the drug education class, students and teachers had an honest conversation about common mental disorders and taking care of one’s own mental health. Mental disorders affect many individuals and should be talked about more without stigma and shame. No changes in society, after all, have been ever made by not talking about an issue.

– Jack P.

“I am here to let you know…”

“I wish that when I was younger and struggling, a speaker such as a Minding Your Mind young adult speaker had come to my school to let me know I wasn’t alone and that I had a voice.” That’s what I always wanted but unfortunately I was never blessed with that experience. Instead I was told to hide the things I was going through because they weren’t things that others accepted. This led me to having issues with self worth and working to fit in because I was afraid of being judged by others. After being diagnosed with an anxiety disorder called Obsessive-Compulsive Disorder (OCD) and Depression, I was devastated because I couldn’t let anyone know that behind the girl that played sports and smiled there were demons that she had to face everyday. I felt so alone.  I felt like I didn’t have a voice and always had to work to please those around me. My mind would make me believe that I was useless and that I would always be defined by my issues because mental health is not something we talk about lightly in society. I reached a really hard time in my life where I felt like nothing could ever get better and this was when a friend really started noticing that I was struggling. She became a huge support system and gave me the strength to realize that I wasn’t defined by the things I went through and I could get help and still live my life. For the first time, I started feeling the strength to use my voice because I did not want anyone else to feel the way I felt and I thought it was my job to help those around me just as my friend did for me. When I finally started using my voice and volunteering for the cause, I felt empowered and for the past nine years I have had the best job in the world; speaking to young adults. Now when I go into middle and high schools I make sure to tell the students this, “I am here to let you know that you are not alone and to let you know that you have a voice and that is a very powerful thing!”

-Melissa H.