Brain Tumor

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    Amanda Van Eps

    Patient Management and Consent in a Post-Roe Era

    I was diagnosed with a brain tumor in 2020 as an incidental finding after a routine MRI for migraines during the height of the pandemic. This was not my first diagnosis with a chronic or invisible illness, but proved to be an annoying diagnosis. I say this because it came with more questions than answers. Until you have the tumor removed or biopsied, there is no way to be 100% sure exactly what it is beyond the educated guesses of your amazing medical team. In what I thought would be unrelated, I had an IUD eject itself a month or so prior to finding the tumor, so I was in the market for a new form of protection and menstrual control. Because I also have POTS, birth control has been extremely helpful in controlling some related blood pressure and migraine symptoms. While updating my OBGYN provider to get a new IUD, I was refused until I received clearance from my neurologist. The reasoning was that the hormones from birth control may or may not worsen the status of the tumor. Now while I agree it is the provider’s job to inform the patient, the patient’s consent is the only consent that matters. As if I didn’t understand the repercussions when the duality of the hormones from an unwanted pregnancy wouldn’t be just as precarious, but obviously more so. My medical history is complex and nuanced and that IUD helps manage other conditions I must deal with on a daily basis. I did not have the luxury of just managing the tumor and leaving other conditions and their symptoms to be reactive. I wrote my neurologist a light, but snarky email about how I’d rather be afflicted by the hormones of birth control than those of an unwanted pregnancy. His office faxed a letter to my OBGYN to clear me for my IUD, but the fact I had to ask him for birth control sits oddly to this day. I share my story because we are now in a post-Roe climate where patient autonomy, needs, and consent are often secondary to blanketed thought. Thirty-eight percent of American women face one or more chronic illnesses. The symptomatic nuance chronic illness places on childbearing years will never see the inside of a courtroom because justices are not qualified physicians. These blanket bans by the states will never know how to regulate exceptions, acknowledge women as whole patients, or address their patient outcomes. Now that the Supreme Court has asserted that all uterus-bearing patients no longer have the right to privacy, there is no longer a threshold or standard for patient care independent of a state’s belief systems. Risk assessments are no longer the choice of just the patient, depending on your location. Where does this leave an already complicated relationship between physicians, their patients, and the conditions they’ve vowed to treat?

    Anne @anne78

    Reflections on Caregiving For a Parent

    Twenty months ago I was thrown into the role of caregiver unexpectedly. Before I could process what was happening, I was helping my mother through recovery from brain surgery and then through unforgiving treatment for an aggressive breast cancer. The diagnoses came just weeks apart from each other and shocked us both. Not exactly what I had planned leading up to my 21st birthday. On top of that COVID added an extra challenge to the situation. I can’t say that we have come out the other side yet, but it is my second Caregiver Awareness Month as a young caregiver. Last November my mother was in the middle of active treatment and we were having what I can now see as some of the most challenging moments of both of our lives. Now, we are able to step back a little bit and I am taking this month to reflect on some of the things I have learned through this time. They are a combination of realizations, advice I have received from others and things I wish I would have known 20 months ago. 1. Caring for another human being is really, really hard work. Before I was in the thick of it, I never realized how strong you have to be both physically and mentally. 2. Laughter is more important than (almost) anything else even in the most dire of circumstances. Humor is more powerful than I could have ever imagined. 3. The role of the caregiver is almost always overlooked. This was especially true during COVID when patients often had to attend appointments alone. The person who spends the most time with them and has the most responsibility in their lives is not asked their opinion and often not listened to. Especially if you are a young person acting as a carer, you have to be much louder and more forceful than you probably want to. 4. You can’t ever tell how sick someone is from looking at them. Something that sticks with me is when a doctor said to my mother “you don’t look like someone with a brain tumor.” Reassuring?… Actually, not at all. Because the world doesn’t work like that. Illness doesn’t work like that. 5. Advocate like your life depends on it. Because it does. I used to think that when you were in trouble someone from somewhere “in the system” would come and help you. Turns out that most of the time you not only have to go searching for help, you also have to fight to get it. Yes, it is exhausting. 6. Talk about death. Whether you or someone you love is sick or not, these discussions are some of the most important of your life (ironically). You never know when the course of your life could change or when it might be too late. These conversations are not morbid. They are empowering and allow for everyone involved to have peace of mind, knowing that they are doing what was wanted and planned. 7. Every day that you feel good is a gift. Sounds a bit cheesy, but so many days are taken for granted. If you can get out of bed, celebrate that and do a little dance. 8. Give yourself grace. Another young woman I met in a support group once told me this. 9. It hurts to be cared for sometimes. I don’t think it matters what age you are when you suddenly find yourself needing care, it’s painful to lose any degree of your independence. If someone allows you into their life at a time when they are so vulnerable, it is a great privilege. 10. Kindness means everything.

    Sarah Winslow

    Searching For Answers and Finding a Brain Tumor

    I have thought about what I would say when I purchased my first home, or finally graduated college, or accomplished something that I was proud of. Maybe I’d have another baby, or finally get out of Connecticut. Open the business I want to. Travel to Europe. Do things I’ve dreamed of. I thought of how I would feel. I carefully thought of and picked out the words to describe the pride and excitement I would undoubtedly feel. What I never expected to write was how I’d feel after finding out that I have a brain tumor. I’ve been struggling for the last few days trying to figure out how I actually feel. How do you process that? I feel worry about health insurance, and frankly, that’s about it. I feel dread about having to go back to a job that allowed me to be overworked and make my symptoms worse; a job that, on the other hand, I am immensely grateful for, for had I never been verbally assaulted by an employee and had to take a medical leave for the post-traumatic stress disorder (PTSD) that followed it, I would have never known. The nervous breakdown afforded me the opportunity to have paid time off and deal with my issues and make an appointment to get this pesky ear of mine checked. Hooray, American healthcare system. Here’s the deal. I’ve been dealing with a lot of strange symptoms for the better part of the last 10 years, all of which I’ve been told would improve if I were to exercise more and lose weight (which has always been a struggle. We’ll get to that later). I’ve been treated for fibromyalgia to deal with the pain, continued visits to my rheumatologist to check for lupus and Lyme’s due to a positive ANA, meds and therapy for depression and PTSD, Botox and therapy for migraines, massage for the chronic musculoskeletal pain, GI doctors for the unusual abdominal pain, cardiologists for the chest pain, ophthalmologists for changing/worsening vision due to working so much the last 15 years — so many visits and tests. You name it, they’ve run it, and it’s all come back “normal.” When my PCP’s practice sold to a corporate entity, new doctors came and went. One of the new doctors was assigned to me for my annual physical. She told me that all of my problems would likely go away — including my panic attacks — if I would start exercising and doing yoga. What she didn’t know is that I’m a certified RYT-200 yoga teacher, with an Ayurvedic certification, and am more active than most people I know. But because of my size, she assumed I was sitting around eating sticks of butter all day. Needless to say, I never saw her again. I never realized my hearing was off until a year ago when I started working part-time for an answering service. I’d had a hearing test done a few years before to address the ringing in my ear, but I could hear fine, so they sent me on my way. I would notice this strange flutter in my ear every time the phone would ring, and it would hurt like hell. I always felt pressure in my ear, and like there was water in it, but these noises made it worse. I told my doctor it felt like someone was hitting me with a sandbag in the head, and I would lose my hearing and just hear ringing until my hearing came back. “Huh. Well, that’s weird.” Yep, sure is. So, I just dealt with it. What else could I do? My right ear, and directly above it, always hurts. I always have a headache. I am, quite literally, always in pain. However, I do yoga, and I eat relatively healthy, and I get massages, and I drink lots of water — and wine — so I tend to keep it in check most days. I am blessed enough to be within driving proximity to two amazing meditation centers, both run by monks who teach about mindfulness and the path to enlightenment. Having spent the last several years visiting both places and practicing meditation, I had found a way to conquer my anxiety, but the pain and the other symptoms never subsided. I knew it wasn’t anxiety. There are some days that are better than others, but I just deal with it. It’s exhausting being in pain and dealing with this invisible illness that nobody can figure out, and people don’t want to listen to it. Doctors are sick of seeing me. I refuse pain medications and want answers. They could give me pills, but nobody could give me answers. They’d just stare at me, blank faced. When another new physician came into my doctor’s office, and I listed all of my symptoms, she asked why I’d waited so long to say something. I laughed. And laughed. And laughed. I finally sucked it up and made an appointment with an ENT — again. The first time was a few years ago, and since the hearing test came back normal, they didn’t see a need for any follow up. However. I had a test done a few weeks ago to check the nerve responses in my ears. The doctor noticed an abnormal reading in my right ear, and it alarmed him. He ordered an MRI of my brain. He told me not to worry; there are issues in only about 5-10 percent of people he orders this test for. The scan showed him what he feared — I have something called vascular loops within my internal auditory canals, which is causing the pulsatile tinnitus, the term for what my other doctors have ignored. Pulsatile tinnitus is something I’ve never heard of nor has it ever been suggested to me. When I read the description of it, it was dead on. Apparently, it’s also untreatable. Wahoo. The MRI also showed a .4cm tumor on the right side of my brain. A lesion. A nodule. A freaking tumor. What does this mean? Where do I go from here? Is it cancer? Does this mean I can get free Starbucks now? Are there member cards? A secret club? A handshake for those of us whose hands don’t grip well? Should I make a bucket list? Do I have to go back to the neurologist and not be irritated that he didn’t catch this the first two times I went there with the same symptoms? Am I going to die? Is this the cause of all my problems, or is it going to be another “well, you have it, but that’s not the actual problem.” Sometimes, I feel like I could walk into my doctor’s office with my entire body set ablaze, and they would look right at me and tell me that the fire wouldn’t have happened if I had just exercised a little bit more. Also noted on the MRI — an issue with my pituitary gland. Interesting, no? For the record, I haven’t ordered dessert or anything fried or with cheese on it in over 15 years in an attempt to “lose weight.” Do you know what I ordered the day after I found out? Tiramisu. I took three bites and was elated. It’s one of the most delicious things I’ve eaten in the last 15 years. I have always held onto the idea that we, as individuals, know our bodies better than physicians. I have known something was wrong for the last 10 years. I have gone to people who know infinitely more than I do who have all come up with nothing. I have trusted my health and my future with other human beings, and that is terrifying when you think about it. I have a hard time trusting anyone, but especially doctors, because we are all human. I feel that folks tend to associate medical professionals with being infallible, and while I will never underestimate the expertise of professionals who have had decades of schooling and practice, I firmly believe that, at the end of the day, we are all human. We have to be the advocates for our own bodies and stomp on the ground hard enough and scream until somebody finally listens. This happened to a very special woman in my life, too. She went to so many doctors, insisting she had a pain in her left breast, advocating for herself until, finally, someone listened. Her diagnosis? Breast cancer. She caught it early, and she is in remission. Thank God she knew to listen to herself. So, scream. Advocate. Find your voice, and listen to it with your whole heart, and do not stop until the right person listens. While you’re at it, quit that awful job. And for the love of all that is good in this world, order the tiramisu.

    Hana Joy
    Hana Joy @hanajoy

    How My Sister and I Learned to Communicate With Her Brain Tumor

    Standing in a room heavy with suffering is its own kind of awkward. It is not that different from the awkwardness of a low-stakes work presentation. What do I do with my hands? Where do I look? Am I speaking too fast? Too slow? Sitting in the neuro ICU with my sister, the awkwardness is familiar, only every muscle is tense to keep me composed as Mom cries uncontrollably, wondering how something so cruel and unfair can happen. My little sister has come back from the brink many times. Though with each near death, it feels like something precious is taken from her as payment to stay. Her memory, her balance, her eyesight, her hearing, her bowels, the ability to enjoy food, her movement, to satiate her thirst, to breathe, to speak… she’s stubborn though. She’s not going anywhere until she damn well pleases. I keep a mental list of rules on how to appear for all possible interactions: 1. Don’t look too hard at the brutality of the surgical scars, the tubes and needles, the tiny bruised and emaciated body, while sitting at her bedside. 2. Don’t look worried when engaging with her (smile!). 3. Don’t focus on the simultaneously sickly yet sterile smell of the room. 4. Don’t cry when another person is crying so they can be allowed to fully grieve with the assurance it is OK for them to let it all out and be vulnerable in the space. 5. Look thoughtful and unquestioningly stoic when the doctor is giving their assessment (no matter how cold, condescending or insensitive they may be). 6. Be as kind as possible to the nurses and support staff (they do not get nearly enough credit for what they do). 7. When it’s just the two of us, I can quietly sing lullabies, that is until I feel I might lose composure and break my rules. Pulled back and forth between consciousness, and slowly rusting from the inside out due to a tiny bleed in her brain, my sister is exhausted. Intubated, she can hardly speak, her condition (superficial siderosis as a complication of a brain tumor) also means she can barely hear. Some days are better than others. She is desperately uncomfortable. Unable to eat solid foods, one of the last small comforts she was able to cherish, gone. I sit and watch uselessly as nurses and caregivers throw their hands up in frustration, unable to communicate. Begging us to get her to comply. Her red in the face with anger. At least they try. The doctors don’t understand the point of it. “I would never want to live like this. Would you?” “This is not the kind of thing you bounce back from.” “She’s not there anymore.” “It’s not like she’s a rocket scientist.” We nod to let them know we’re taking it all in. She’s often aware. She’s just trapped. Able to muster short answers now and then. They don’t see her eyes light up when we show her pictures of animals. They don’t feel her hand tightly gripping my mom’s as she tells her she loves her. They don’t know what the slight sneer on her face means as we tease her brothers. They weren’t in the room when a massive, fluffy bernedoodle sporting ridiculously long eyelashes jumped up onto her bedside while she was comatose, causing her to open her eyes and reach out to pet him. My sister was diagnosed with a pilocytic astrocytoma midbrain when she was 10. She collapsed as we walked to the library one summer. The kids all sat hushed, adults rushing around us, catching pieces of broken sentences. “Probably just an ear infection.” “The size of a lemon.” “Cancer?” “We can’t say that for sure.” We got to eat McDonalds, a rare treat, but us kids just sat quietly in the dark van listening to crinkling wrappers, struggling to swallow chunks of tasteless cheeseburger while we drove home without our sister. As I sit, my skin melting into the blue upholstered hospital chair, I recall how depressed I used to get when I lost my voice even for a few days. This would be unbearable! There is a pad and whiteboard on the table. Mom uses an EXPO marker to tell my sister she has to take her medicine, what day it is. Short, essential information. The next time she refuses to take her medicine and the nurse leaves in frustration, I grab the whiteboard and ask “ Why?” She looks at me surprised to actually be engaged in conversation. “I don’t trust you!” She struggles to blurt out. “Why don’t you trust us? ” Her energy used on the full sentence, she motions for me to bring her the board. She feebly writes “IM Done” along with three more words I cannot decipher, she closes her eyes, lips clenched. From then on we replaced the awkward silence with whiteboard conversations. Sometimes one-sided, oftentimes just pictures of cartoon dogs, things I had seen that day. A picture really was worth a thousand words when it became the most efficient way to tell her she had a new nephew. Two familiar caricatures holding a generic baby. We even play successful games of hangman. Weeks later, I scramble for my pen and sketch pad in the ER. Trying to think of the most efficient way to ask a dark question. “If your heart stops… do you want them to restart it?” A weak nod, “Yes.” I return to my art studio across the country and pull piles of loose conversations smuggled from my visits with her. I need to make them into something permanent and substantial. I need a task to obfuscate my helplessness. How do you grieve for the living? I painstakingly pull a needle and thread through delicate tissue paper embroidering our conversations into soft, blushing transparent red paper. As I finish struggling with “IM Done,” I trace the other three words and finally decipher: maygodhelp.

    Jeannie Brown

    When My Rare Brain Tumor Diagnosis Didn't Fully Explain My Symptoms

    I have a benign brain tumor which is called an acoustic neuroma, or vestibular schwannoma if you want to be fancy. It’s a rare tumor. One person in 100,000 will be diagnosed with an acoustic neuroma in any given year. Picture the biggest college football stadium in the U.S. See all those people? Just one will be the unlucky one diagnosed with an acoustic neuroma. It was 2010 when I was diagnosed and I was 33 years old. I had been so sick — incredibly fatigued, lightheaded with painful headaches and pressure in my head — that I was happy to have found a reason for my suffering. The only problem is that while we found something that definitely needed treatment, the tumor was not making me sick. Then neurosurgeons told me that my symptoms were not caused by the acoustic neuroma. They said the only symptoms usually caused by an acoustic neuroma are loss of hearing and dizziness. Wanting to believe we had discovered the problem, I told myself that my lightheadedness must have actually been dizziness and that my headaches weren’t so bad. I so badly wanted to focus on living my life — raising my young family and advancing my career — that I stopped questioning why I was sick and denied how I really felt. What I wish I’d known then is that if your rare disease doesn’t explain your symptoms, there is probably something else going on. It wasn’t until six years after the diagnosis of my brain tumor that I realized there might be another explanation for my symptoms. For Christmas 2016, my parents gave me a Fitbit, and I soon noticed that my heart rate was often accelerated. I engaged in some internet research and began my long path to a diagnosis with postural orthostatic tachycardia syndrome (POTS). I wish I had not spent so many years believing the brain tumor was my only medical condition. I wonder how my life and career would have played out if I kept pushing for an accurate diagnosis instead of pretending that nothing was wrong. The moral of the story is: if your symptoms haven’t been explained, keep looking. You owe it to yourself.

    Jeannie Brown

    My Complicated Relationship With LinkedIn as Someone Who Can't Work

    Every once in a while I check out what’s going on at LinkedIn. I usually end up regretting it. Not because of the content; I always find a few interesting articles. I regret it because I see a few job postings that sound interesting. I start thinking “I could be a good fit for that job.” Then I remember that I can’t work. I haven’t been able to work for five years now. I live with a few disabling conditions. I have postural orthostatic tachycardia syndrome (POTS). I have chronic migraine. I have a “benign” (meaning non-cancerous, not harmless) brain tumor. These conditions may all be related. Or I might just be unlucky. I have spent hours thinking about what kind of job I could do. I always end up with the same conclusion: there is no job I can do with my limitations. I endure two or three migraines a week, each stealing hours of my day. I can’t work at all on migraine days. I don’t know when the migraines will strike, but I do know that I would miss multiple days of work every week if I had a job. And I would, of course, be fired. Additionally, because of POTS, I cannot stand too long and I cannot sit too long. If I do either, I end up light-headed with a racing heartbeat. Another thing I cannot do is look at a computer screen for more than 15-20 minutes at a time. I simply have too many limitations to get or keep a job. I try to look at the positives in my life. I used to work long hours, but now I have much more time with my husband and children. I am blessed to get monthly disability insurance payments. My husband has a job that provides me with great health insurance. But I still miss work. I miss the challenges. I miss the sense of accomplishment. I miss working toward short and long-term career goals. I miss the friendships and the laughter. I let myself be sad about it sometimes. And then I stay away from LinkedIn for a while.

    Community Voices

    How do you deal with not being able to keep up w/to do lists, home & life responsibilities? #

    How do those w/chronic illness deal with not being able to keep up w/to do lists, home & life responsibilities? I feel overwhelmed,is this common w/chronic illness patients? I use to have boxes checked off & felt on top of things inc small things day to day. Now Im always forgetting things I need to do & falling behind. Im I use to be a type A personality, now I say Im type c & laugh it off but internally it hurts. Thats not me & struggle alot.
    #ChronicIllness #todolists #MS #BrainTumor #ChronicFatigue #ChronicPain #Life

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    Katie Sandler

    When Chronic Illness Affects Your Physical Appearance

    I didn’t understand or care about the concept of being pretty until I was about 10 and Max Humphreys told everyone in our fifth grade class that he thought I was hot. Before this I was more concerned with beating every boy in my school in an arm wrestle, getting 10 perfect back handsprings in a row, dying my tips hot pink, eating as many French fries I could in one sitting and contorting my face into the most disgusting expressions to hear my friends laugh. Physical beauty wasn’t something that mattered to me until I realized that I possessed it, but more importantly, until people started focusing on it. By the time I was in Jr. high school, with the exception of close family and friends, people seemed to care less about my ability to dominate any boy on the basketball court, the straight A’s on my report card and my quirky sense of my humor. Compliments and conversations began to revolve around my long blonde hair, how perky my boobs were, how plump my lips were or how lucky I was to have a six pack at just 13. Sometimes I thought my physical appearance made me some kind of liar. Everyone constantly told me how “pretty” I looked, but I was still the same weird girl who lived for farting competitions and slept with her mom when she had bad dreams…. or every other night for no apparent reason. When boys would pay me attention or If I started “dating” someone, my friends would laugh and say, “oh Katie, if they only knew what you were like behind closed doors.!” In high school people continued to tell me that I was “gorgeous, stunning, looked like a model, skinny, perfect.” And to be honest, I liked the attention. I felt special. But what I also started to notice, was that the more people perceived me as “pretty,” the more “dumb” they thought I was. This confused me greatly, as my grades were pretty impeccable and I spent hours studying and perfecting assignments every night. The whole dumb blonde thing only really started to effect me when my basketball coach began to taunt me. During one game, when I incorrectly carried out a play, my coach asked me if my blonde hair was getting to my head and took me off the court. I ran into the locker room crying, feeling labeled and completely misunderstood. Ever since that day freshman year, I felt I had to prove to people that I was smart. My intellect undoubtably became my greatest insecurity and I would masterfully hide behind my looks for confidence and validation. Fast forward four years later to my first year of college at the University of Texas. I rushed for a sorority two weeks before school started, so my priority as an incoming freshman was finding the perfect pairs of heels to match my new sundresses. After joining kappa kappa gamma, attending weekly mixers and date events, the focus on physical appearance continued. I was elected a sweetheart in several fraternities and loved every second of it. While my grades never suffered, I certainly cared much more about looking the part in my Greek bubble than playing the part as a motivated, dedicated and capable student ready to take on the world. During junior year, I got really sick with an infectious colitis called C-diff. I almost died. But according to my GI doctor at the time, who did save my life, “you can never be too rich or too thin.” I guess he was right, because when I returned back to school after surgery about 20 pounds lighter, all I got was compliments. Girls would say to me, “wow, how do I get that disease.” But it’s not all so black and white. Of course there were those who spent way too much time trying to spread rumors that I was anorexic, but for the most part people just continued to tell me how great I looked. When I graduated college in 2014, I got significantly sicker. My colitis wreaked havoc on my my autonomic nervous system, causing me to develop a chronic illness called POTS along with severe gastrointestinal dysmotility. I became so ill I had to permanently quit working and was told I would be homebound and severely limited for my entire life. But guess what!? It was really no big deal, because according to everyone around me, I still looked beautiful! “Katie, nobody would ever know you’re sick. You’re so pretty,” I was told over and over again. While my body wasted away in size over the years, the one thing that never changed was my face, so if I wore the right clothes, I could fool just about everybody. After getting married to the love of my life, my health continued to deteriorate rapidly. My stomach and colon became so slow, we needed to explore more aggressive surgical options. When I finally got an ileostomy bag, my friends and family challenged me to wear it proudly. I thought that my new mission was to show that you could still be “pretty” with a bag, hence my short-lived Instagram account hotostomygirl. But why did I still care so much? I had almost lost my life again post-surgery, yet the second I got out of the hospital I found myself at a hair salon in Soho getting my roots done, as I sat in excruciating pain with a catheter hanging out of my small intestine to help it drain into my bag. For months, while my husband and I lived at my mom and her boyfriend’s home for support, visitors would come and go. During this time, my ostomy was having many complications, and I spent most hours of the day in the bathroom digging feces outside of my stomach with medical tools, as my small intestine was not properly outputting stool. But there were always those five minutes in between those crap digging sessions, where I would apply my mascara and two dabs of blush to make an appearance for my next visitor. And of course the first they would say was, “wow, you look great!” But then something happened that was far more devastating for me than strutting a non-working ostomy bag at 28 and being on the brink of death. My perfectly symmetrical features and cheek bones started to fade away behind a swollen swollen moon face. I felt like Will Smith from Hitch when he had an allergic reaction and had to run to the pharmacy with Eva Mendez to chug a bottle of benadryl. As the weeks went by, my tiny little body began to change. I had gained about 15 pounds of pure fat even though I was barely able to eat. I always viewed weight gain as a positive thing with my illness, but the way it was occurring was peculiar and didn’t look right. At the same time, my hair began to fall out, and I found my legs covered in bruises. I was devastated. And of course all anyone wanted to say was, “well you’re still pretty, your face just looks a little puffy! Just like you had a salty pizza and fries night!” I hadn’t eaten pizza and fries for about 10 years. With my worsening gastrointestinal situation, I decided to not look in the mirror or weigh myself for a while, and just focus on getting strong for my revision surgery to correct my malfunctioning ostomy. As the months passed by, my facial and body swelling began to go away and my hair slowly started to grow back. My surgery ended up working and I felt like I could finally go back to living my already shitty life, but not so shitty that I was dying and with a pretty face again! Fast forward to COVID-19. I had worst intestinal obstruction of my life. This landed me at South Hampton hospital where they had no idea what to do with me. My family couldn’t be with me due to COVID protocols. When I was supposed to be heliported to my specialized hospital in NYC, the facility became COVID only. My husband, my mom and her boyfriend lived next to me on FaceTime for the duration of my stay, communicating with my doctors and nurses as I was too weak to do so myself. When I was finally transported to Stonybrook Hospital to see a more experienced colorectal surgeon, the staff agreed to let my mother come say goodbye to me in case I were to die. I was preparing for my great departure. Cozied up in my stomach bile drenched hospital bed with “COVID code-blues” blasting on repeat over the intercoms, I tried to talk to my dead father and imagined I was in a nice warm cabin overlooking a beautiful mountainous landscape. I do remember a new night shift nurse coming in and saying, “oh you’re so pretty!” But soon I opened my eyes and my mom was standing before me with my surgeon who was holding a variety of different sized catheters and ostomy irrigation supplies. My doctors had guided this surgeon on what to do over a FaceTime conference, and to everyone’s surprise, with my mom holding my hand, the blockage was cleared. I returned home with my family. Unfortunately, my intestine did not want to wake up again yet. Just like I had previously done before my revision surgery, most of my day was spent on all fours sliding a catheter in and out of my intestine over a bucket. I ended up having to be fed through a vein that led to my heart for several weeks. But what was getting to me the most? My face started to swell again and my Will Smith alter ego was coming back. Out of nowhere, I began having emotional outbursts and feeling very suicidal. My doctors blamed it on malnourishment and post-traumatic stress, which was a valid assumption. But the outbursts became so severe that I found myself throwing large objects at my husband, cussing out my mother and concocting plans to end my life. Over time, the facial swelling worsened and the hair loss continued. I stepped on the scale. I had gained 15 pounds quickly, which only really started after I was taken off of my nutrition, so this concerned me. My breasts began to sag, my clothes no longer fit, and my body was covered in bruises again. I begged doctors to evaluate me. They brushed me off, insisting that weight gain was a positive thing and my body was trying to recalibrate. They thought I had an eating disorder and body dysmorphia, I could tell by the way they talked to me and had been down that road with doctors for years. But the weight gain continued to sky rocket, my muscle integrity diminished greatly underneath the layers of fat that I was swimming underneath, my insomnia kicked in at full force, and I was so angry I could have huffed and puffed and blown a house down. It wasn’t until I admitted myself to the hospital, which I don’t even do when I’m dying, that they began to test for an illness called Cushing’s disease. Because most Cushing’s patients become obese, they were still in denial that I had it and very reluctant to do the entire medical work up. I had every single symptom, minus the large buffalo hump that grows between the shoulder blades. Cushing’s is often referred to as the “ugly disease.” It is caused by a benign tumor, usually on the pituitary gland of the brain or on the adrenal gland, that excretes excess amounts of cortisol. The cortisol causes the body to undergo rapid weight gain, facial swelling, mood swings, hair loss, easy bruising and many more undesirable symptoms that literally cause its victims to behave and look like prehistoric beasts. Several months later, I finally found a doctor who could properly diagnose me with this horrific disease and run me through the appropriate tests without judgment, hesitation or ego. So here I am, waiting for my final tests to come back and praying they remove the tumor found on my brain that is causing me to morph into someone who I no longer recognize as myself. Perhaps my greatest struggle throughout this entire journey has been the loss of my physical self. I grieve the woman who I saw in front of the mirror every day. I miss her dearly. The funny part is that the first thing people can think to say to me now is “I’m sure you’re still beautiful!” Or “the weight will come off. You’re still gorgeous to me!” All I want to tell them to do is to shut up. For my entire life I have been cursed with the blessing of being an attractive female and having people base their opinions of my character simply off of the way I looked. I got so warped into it, now I don’t even know who I am when I’m no longer am without my looks. Now that my physical beauty has been stripped away from me, I barely care to reacquaint myself with the person underneath my shell. So I wish everyone would do me a big FAT favor and stop commenting on the way I look. Stop telling me I’m still pretty. Let me for once in my life, surrender to it all, and accept the fact that I am not a striking specimen at the moment. And even if I still was, let’s focus on the fact that I’m a warrior and have somehow lived through years of illness and agony rather than the fact that I fit some antiquated stereotype of what it means to be gorgeous in today’s very broken world. And when I say I’m ugly, don’t tell me I’m not. I’m allowed to feel ugly for once in my life. Maybe if I embrace it I’ll feel less like I died and more like there’s hope for a future. You telling me that I’m wrong makes me feel invalidated and as though being pretty is still the most important thing in the world. So until I get my brain tumor taken out, I’m owning the fact that I am not happy with the way I look and maybe that’s OK. As we enter into a new year with much needed change, let’s start complementing growing girls on their accomplishments before their physical beauty. Let’s start making them feel prouder about the painting they made in art class, their winning goal in their soccer game, that 95 percent on a history paper, and the fundraising project than they do about their hair or new outfit. Let’s guide them toward being a changer and a shaker instead of just a babe and a head turner. Life is too short and when looks fade, it’s those who know themselves deeper than the surface who can’t lose sight of who they are.

    Jessica Clark

    Confessions of a Therapist With an Anxiety Disorder

    “Weather dot com,” I typed into my family’s clunky IBM computer. I’m pretty sure it still had dial up. I can still hear that sound associated with two things. The first, and definitively more exciting prospect, being waiting to check my AIM messages from friends with screen names such as “cutiekatie910” or “soccergurl4eva.” Not that I could judge. I was decidedly the “dancerchick323.” The other purpose of old faithful was to check the weather. I monitored the weather with a regularity my devout Italian-American grandmother designated to her Roman Catholic faith. Sam Champion was my patron saint of sorts.  Every morning, without fail, it was me and the weather report. We had what I would classify as a sort of love affair. The contents of that website had probably the largest pull on my emotions of anything at that time in my life. My fair-weather lover could make or break me with a click. I hated it and I needed it. If said clear skies, the coast was literally and figuratively clear. It would be a good day. This day, it said 30% chance of rain. That was my threshold. It was a no-go. Now onto the task of finding yet another excuse of why I simply must stay home. Headache? No, that would just be a Tylenol and send me on my way. Fever? That is probably untrue. Hiding in my room and hoping my mother wouldn’t know the difference? Not as the daughter of a helicoptering social worker. She knew my every move before I did. Let’s go the honesty route. Just tell her that I simply can’t go to school because that 30% chance of rain meant there was a 30% chance of her certain death. Be it by a car accident, which was my most typical rumination, or some other more elaborate concerns such as a flash flood or a freak lightening strike. The fact that it was raining didn’t just mean that there was more of a chance of weather-related death. My anxiety-riddled brain also connected it to an increased chance of anything generally terrible happening. It was something about the ominous foreboding of grey clouds that kicked on that fight-or-flight response and it was over for me. When you have an anxious thought for long enough, it loses its irrationality and instead of rationalizing yourself down to match the anxiety level of others, you start to wonder why they are not as concerned as you are. A passing thought becomes an impenetrable fact. I would stare at my mother and wonder,” Do you not know that it’s a 30% chance of rain? Do I have to look after this entire family myself?” After a morning pondering my and my family’s imminent demise and receiving yet another piece of psychoeducation from my concerned mother that “avoidance is the food that feeds anxiety” or any other metaphor she thought of that day, I ventured off to the place I hated most — school. Did I mention that I was 8-years-old? I was fun at child birthday parties. While I have since grown out of my weather phase and can now appreciate the tranquility of a nice stormy night, my anxiety, like the grubby little opportunist it is, has shapeshifted and transfigured into many different forms in the decades since the “weather years.” Much like I went through phases (there was the year of only dresses, the musical theater girl, and the Godforsaken, unspeakable age of the nameplate and too much hair gel), my anxiety had its phases too. They grow up so fast! For a period of time, it was crippling social anxiety and fear of rejection, but it has also been terrorism, school shootings, anaphylactic shock (despite having minor food allergies), a brief foray into obsessive compulsive tendencies, and an omnipresent perfectionism and need for external control to manage the internal turmoil. Anxiety has always been a piece of me. Sometimes, when I am feeling more in control of it, I see it more as a cloud that follows me around and less as a character trait. But when it’s something that’s been central to your human experience for virtually your entire life, it’s hard not to view it as a part of you in the same vein as my knack for reading and my aversion to cilantro. I call anxiety my worst kept secret. I like to pretend that I keep it well hidden. And in some spheres of my life, I do. People are often surprised, or feign surprise, when it seeps through and they get a glimpse of a moment of panic or reach the edges of my comfort zone. I watch their opinion of me change as I must explain that, “No, I cannot go to the movies with you on account of mass shootings. I have not been since I ran out of the theater during Les Miserables and caused a mass exodus, thank you very much.” And it is true, voice of my therapist in my head, that I have been able to do a lot considering the intensity of these feelings throughout my life. And yet, there’s still something shameful about admitting that you are limited in some way. It appears to reveal a level of inadequacy, an inherent weakness in your “moral fortitude.” On an intellectual level, I believe we need to do our part to combat the pervasive mental health stigma in our society particularly in regards to mental health treatment access. And I would feel that way — because I am a therapist. That’s right, the girl who would run out of her first-grade classroom to throw up for the first four weeks of a school year grew up to help others manage their social and emotional issues. On a personal level, it is very hard to afford myself the same level of compassion and understanding that I naturally have for my clients. There’s something about this title that I think has worsened that internalized shame. Like a podiatrist with bunions or a smoking cardiologist. Shouldn’t we of all people be the ones who have the answers to all of this stuff? Didn’t my master’s degree free me of a life of panic, phobia, and rumination? “Pay no attention to the man behind the curtain.” Pay no attention to the woman behind the knowing, empathetic smile. And while I have identified and challenged my maladaptive thoughts, meditated, practiced self-care, processed, explored, validated, emotionally freed, and downward dogged my way through life, I haven’t yet been able to rid myself of a relatively high degree of anxiety and existential dread. And maybe that’s the point. Maybe we are not supposed to learn how to rid ourselves from anxiety, but learn how to live a full, rich satisfying life with this anxiety. And if my clients are seeking insight into how to do that, they have certainly come to the right place. I connect with them from a place of understanding that only someone who has walked that path can. All the graduate school literature reviews and memoirs in the world cannot adequately describe the emotional exhaustion that comes from feeling that every headache is an inoperable brain tumor. The description of a panic disorder in the DSM does not touch the surface of what it feels like to be in the throes of one in a grocery store. But I know. And I walk with them and along side them. I hold their hand (proverbially of course, licensing board!) as they try to be a human in the best way they know how. And we are both better for it. I may still check and recheck the doors to ensure there is not a mass murderer in my midst, but I am chock full of authenticity and  humanity, and so far that has been enough. If I could go back to 8-year-old me, I would say, “H ang in there, little meteorologist in the making, because we are going to be OK with not being OK all the time,”… and we are going to pick up a few consolation prizes along the way. We will realize that yoga and meditation gives us (albeit brief) quiet in our mind, that we like the idea of Cognitive Behavioral Therapy (CBT) much more than we like it in practice, and that we were not meant for an anxiety-free life. And our journey is going to mean something. Because our struggle cleared the way for our purpose. And not to toot our own horn, but we become a damn good therapist despite of and because of our anxiety. So put that in your forecast —100% chance of compassion with a side of empathy.

    My Experience With Brain Surgery Recovery

    Recently, I had brain surgery. I had a non-cancerous brain tumor that was impacting a large portion of my brain. When people ask me how I’m doing, I try to be honest but also put a positive spin on it. For example, “I’ve been better but I’m definitely healing!” But today I’m in a lot of pain. This is so hard. I am struggling. I’m 17 days post-op. When I wake up in the morning, I feel very much like myself but with a headache. And then I get out of bed and see what kind of day it’s going to be. I don’t feel like I just had brain surgery until I try to do something. I don’t feel weak or out of it or dizzy or just not like myself. When I wake up in the morning, I just feel like me. And then, every day is different. The last few days, and today, are really hard. The severed nerves are growing back and it burns and feels like lightning around my entire scalp down into my neck, shoulders and back. It feels like there’s a strap around my head and and it pulls really tightly every so often, but not constantly. I have this constant headache deep, deep, deep in my head. My doctor told me to be prepared to live with that headache for a year or two, but it will lessen over time. My hair laying on my scalp feels really heavy, but I can’t pull it back because it tugs, which is overwhelming. Forget brushing my hair or taking a shower. I’m wearing a beanie right now because the very light pressure helps a lot. There’s no predicting the nerve pain. Nerve regrowth and regeneration, and then rewiring the brain is inconsistent. And saying “inconsistent” is an quite the understatement. I have power surges where I’m suddenly super energetic and focused and funny and I can do anything. I love these times. I’m hopeful that these power surges are a sneak peak of who I’m going to be soon. When this happens, I do kinda feel like the me that I know, the me that I was before all the chronic pain started seven or so years ago. I have trouble swallowing solid foods, so I’m eating a ton of soup and fruit, whatever’s soft. I can speak normally, but in spurts. I can chat for an hour, but then my throat hurts a lot and I get hoarse. I’m still not making/taking phone calls. It’s just too much. I can, and want to, hang out with friends, but I can’t really plan it because my energy and pain levels aren’t consistent. I am at home with the heater on right now, and I’ve got shoes, socks, fleece pants, a sweater over a long shirt and a beanie and I’m still cold. In an hour or so, I’ll change into shorts and a tank top. I didn’t expect hot flashes, but here I am. I drop many items that I pick up with either hand. I run into walls sometimes and really just in general my coordination is terrible. Earlier today I tripped on a box and I almost fell, but I landed in a standing yoga pose instead. My memory is awful! I’m told I ask the same question three times a day. People have to tell me the same thing over and over. I cannot keep up with what day it is or what I did yesterday or if I’ve eaten. I did a cognitive assessment at speech therapy and I did fine on the cognition part, but I failed the memory part. In general, though, I don’t have a great memory, so I just can’t make myself believe this is totally a side effect of surgery or medication. My cousin took me to the grocery store yesterday and I’m pretty sure she felt like she had a toddler with her. I’d be just standing around, confused, not sure what I was going to get, and then getting olives because I remembered we talked about olives, so that must be it. We need olives. She actually sent me to get peanut butter. What she’d actually said was that she didn’t like olives and we already have some at home anyway. I just got confused. I did an audiogram yesterday with my regular audiologist, as I have a hearing aid in my left ear. My hearing hasn’t really changed that my much. We compared my test yesterday with my last one, and one part was a little better and one part was a little worse. So while I feel like I can’t hear anything, the audiogram indicates there’s not a substantial change. Maybe my brain is overloaded and that’s why I can’t hear anything. Maybe I’m just overwhelmed. Or maybe I’m not paying enough attention. Day to day, my attention span is that of a gnat. It hurts to read and I can’t focus on the words in the book. Television makes my head hurt, as does my cell phone. I spend a lot of my day with my dog. I had a goal to finish my master’s program by August, but that’s extremely unlikely. And I’m ok with that. Nobody plans for a brain tumor to come along and take over your life for a few months. One of the reasons I’m so open about what I’m going through is because it just helps me to write. Writing is therapy for me. Another is because everybody has problems, and we have to take care of each other. Maybe, by me talking about it, other people will feel encouraged or less alone, even if they don’t comment or reach out. Ask me questions about the tumor or Hashimoto’s or fibromyalgia or endometriosis or whatever else I have. Or tell me about what you’re going through. Let’s talk. Let’s go walk the dog. Let’s take care of each other. You know your secrets are safe because I won’t remember what you told me anyway. Brain Surgery: Zero stars. Do not recommend. Recovery sucks. It will get better. It’s definitely worth all this pain and I’d do it again if I had to. But it’s really, really hard.