A Deeper Reason

A Deeper Reason

If someone had been able to look through my window for a few hours last week, and they knew my diagnosis, they might have expected what they saw: I was sitting on the floor of my apartment, methodically counting out peanut M&Ms and then rushing to wash my hands and the spot where I was laying them out as soon as I was done.

On the surface, it would have looked like typical OCD behavior: counting, sorting, hand-washing. But this time, instead of doing these things to soothe a compulsion like I used to when I was a kid, I was preparing for my Nana’s upcoming 93rd birthday.

I’ve been talking a lot with my new therapist about control. I am the kind of person who wants to control every situation in my life, and when I can’t, I get increasingly stressed. I wrote about this feeling just last week, when I talked about the helplessness and fear I felt when my dog was sick. Thankfully, he’s taken a turn for the better, but I’ve also been feeling distressed lately about Nana experiencing pain in her neck.

Like me, Nana is on blood thinners, so she can’t do much of anything about any pain that she feels. I know, from personal experience, how much I want to take Advil when the need arises. And when I heard that she was feeling pain and no doctor could do anything about it, I felt the same helplessness I feel when it’s me in the patient’s seat.

I know, rationally, that it would be almost impossible to have nothing wrong with your body at age 93, and that pain is part of the human experience. But that doesn’t change the fact that as a granddaughter, I hate that one of my favorite people in the world has to hurt and modern medicine hasn’t figured out what to do. And if doctors don’t know what to do, I figured there’s no way I could do anything about it, either.

I started to feel the same way I did when my dog was so sick last week: helpless, out of control. But then, when I thought back to what has helped me with one of my biggest obsessions throughout my life, I got an idea.

A few weeks ago, I wrote about the fact that my psychiatrist prescribes me anti-emetics in addition to the mental health medicine I take every day. I only use a few anti-emetic pills in a year, but they are always in my purse, something to remind me that I don’t have to feel extreme panic if I don’t feel well. It has occurred to me that, even though I’m getting real medicine from a real doctor, I could just as easily be taking fake pills if I was convinced that they were real. The placebo effect would stop my anxiety in its tracks.

I also remembered a rather funny conversation with my first hematologist where she said that I needed to restrict my eating leafy green vegetables because of vitamin K, but I had no restrictions on chocolate. At the time, I’d jokingly asked her to write that on a prescription pad.

And so, I went onto Amazon and ordered a dozen empty pill bottles with arthritis-friendly lids, then some labels to write on. Then, it was time for the peanut M&Ms.

Peanut M&Ms are Nana’s favorite candy that could fit into a pill bottle, and there was no way I was going to avoid them because of the cross-contamination with tree nuts written on the packaging. I set aside a space in my apartment that would be “contaminated” until I was done, popped open all the pill bottle lids, and got to work.

I put one M&M in each bottle for each day of that respective month. I used 365 M&Ms in total, making a supply of “perseverance pills” for the entire upcoming year. Even though it’s obvious that I’m not a doctor and these “pills” are made of chocolate and candy, I’m pretty sure they will still have the desired effect of reminding Nana that she is immensely loved.

I find it incredibly frustrating that I can’t help with the physical aspects of her life. I live far away, and just like I’m not a vet who can help my dog, I’m not a doctor who can help Nana. But our bond has always been about so much more than the physical, and relying on each other in tough times keeps us both strong.

Every time I leave home after visiting, Nana reminds me of our “special deal” - “You take care of you, and I take care of me.” On the days when self-care doesn’t feel like a priority, or when stress starts to take over, I think of this and try to take care of myself like she would if she could teleport into my apartment. She does the same, and although there are some things we can’t fix, we do our best to support each other in the ways that we can.

I’m still frustrated that I can’t do anything to make Nana feel physically better. But, thanks to these M&Ms that I counted and arranged and cleaned up after so meticulously, I think I can put a smile on her face every day for the 93rd year of her life - and it’ll all be worth it.

Ellie, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Out of Control

Out Of Control

I woke up to my phone ringing, not my usual alarm, but my special Lord of the Rings ringtone. It usually puts a smile on my face, but when I picked up the phone this time, I knew right away that something was wrong.

It was both of my parents, calling from the car, and I could hear my family dog breathing heavily in the back seat. They were at the vet because he had gotten sick all of a sudden, and the more information I got, the worse it sounded.

He wouldn’t eat, which is one of his favorite things in the world. He threw up. He was panting very heavily. His gums were pale, which a hastily-conducted Google search told me was a dangerous symptom that could lead to many possible things. Add all of that onto the fact that he recently turned 15 years old and is a cancer survivor, and it sounded like a recipe for disaster.

When my parents had to hang up the phone as the vet tech took him inside, I hung up the phone feeling utterly helpless. I could do little more than text my boss to let him know that I needed to have the day off work, and then I collapsed into my big squashy armchair with my Gandalf Build-a-Bear.

My mom sounded wild with anxiety and grief, my dad seemed subdued, and I felt numb. I just stared off into the distance, not sure what to do, and acutely aware that even though I am quite the “control freak” in my everyday life, this is a situation I had absolutely no control over.

My dog was 800 miles away, in the vet’s office. My parents couldn’t even go in with him because of the pandemic, so even though they were nearby, they couldn’t do anything either. Whatever was going to happen was going to happen regardless of what any of us said or did or wished or prayed. Everything was out of control.

Usually, when I feel like that, I panic. But this time, I was just numb, curled up in the chair, only able to concentrate on the soft texture of the teddy bear I was hugging and the slight rock of the chair as it tilted back and forth.

Like many times when things go wrong in my life, I reached out to friends for help, and one of my close friends immediately volunteered to come over. I thought I might be bothering her at first, but she set my fear aside and said she would come over right away. It occurred to me, as I tilted the chair back to an upright position, that I was still in my pajamas.

There was one thing I could control: I could choose what to wear.

I peeled myself out of the chair, shuffled into my room, and picked out a black t-shirt with a white and yellow outline of Pikachu. I didn’t bother changing the earrings I slept in, but I brushed my hair, and when I looked in the mirror, I at least looked a little more like myself.

My friend arrived shortly after, sweeping me up in a big hug the likes of which I haven’t really done with anyone besides my family since the pandemic started. I caught her up on everything that was happening and she told me about some of her previous pets and their health problems, and how she’d learned to deal with what happened to them. As someone who also has a lot of anxiety, her insights were very valuable.

Then, I took a dive into happier memories, like the giant picture on my wall of when I read him the entire first chapter of Harry Potter and the Chamber of Secrets as a bedtime story. I showed off his special bow tie I got him at a convention and three neckties he got from his groomer. I showed my friend the tallit he wore at his bark mitzvah two years ago, and in showing off some of my favorite photos and telling stories, I felt like I had at least a little control over how I was thinking of him in the moment.

My friend ended up staying for several hours. In that time, we processed the news we learned about the ultrasound showing lesions on his liver and the blood test with elevated liver values. Then, the news that his current problem is pancreatitis that came on suddenly, and he needed an IV and several shots. We tried to think through different alternatives, including the painful thought of saying goodbye to my dog over Zoom.

By the time she left to go to the dentist, I felt more like a human again, and I decided to take charge of the little things I could do. I organized some playing cards. I picked up a prescription and bought some ingredients for a salad. I started packing for my upcoming visit home. And I stayed in touch with my family throughout the day, doing my best to get information 

As I write this, he is at home, resting with my mom. She’s trying to get him to eat and drink without much success. He’s still fighting the medicine to not sleep. I have no idea if he’ll be better or worse by the time this blog post goes live in a few days, and I have absolutely no control over the outcome.

In the meantime, I am going to remain as mentally healthy as possible by retaining control over the things I can do. I can focus on the little daily choices in my life, whether that means picking what to wear, what to eat, which assignment at work to tackle first, whether to play a video game or read a book, or which route to take on my daily walk.

Even though the bigger things were - and remain - out of my control, I still have the option of making things easier on myself by controlling what I can, and in doing that, pushing at least some of the anxiety away.

Ellie, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Paws for Patrick: A Guest Blog

Sometimes there are no words.  Sometimes there is a pain inside and to try to answer “What’s wrong?” seems pointless and absurd.  Sometimes even if you had the words, and even if you totally trusted the person you were with, it might rip and burn and scar to get them out, and then once they were out nothing would be better.  Sometimes what you need is a companion who can be with you without words.  Someone who you can share love and acceptance and connection with until those feelings subside.  Sometimes you need the love that only paws, or scales or feathers can provide.

Patrick Roemer rarely had access to words when he was feeling terrible.  He would sit in my office with his head in his hands and I would ask questions and he would respond as well as he could with body language.  He just wanted to go home and be with his dog, Cici. When they were together and his fingers were running through her fur he could breathe again. 

Therapy is great.  I have been working with young people with mental health challenges since 1999 and I have witnessed hundreds of kids make incredible progress.  I also know that therapy is not a fit for everyone, and even for the people who love it, an hour a week is often not enough.  As a therapist I’m not there at 3 AM when dark thoughts won’t stop coming, or when it is time to wake and the anxiety or depression are pressing you into the bed like the gravity has been turned up to 11.  But that dog/cat/lizard/bird can be there.  They can help you to feel less alone and give you a creature that needs you to get up and face the world because they are relying on you.  

I remember the day that Cici died.  It was Patrick’s first day of senior year of high school and the anguish that he radiated rolled out from him like waves.  He could barely speak but his body language was screaming at me.  For the next few months we attempted to process and fill the void that had been created but nothing could replace that relationship.  There was pain.  Patrick had known years of struggle with some of the most extreme depression and anxiety I have ever encountered.  There were also good days and times.  During the first months of the pandemic Patrick was bonding with and enjoying his family in a way he hadn’t since his early childhood and he threw himself into other coping skills like exercise.  When he died by suicide in May of 2020 it came as a shock.  I had not spoken with him since the pandemic started, but that didn’t surprise me as talking was never a great fit.  In the midst of their grief his family dedicated themselves to finding a way to support other young people with mental health issues and the path was obvious: connect kids to the love and connection of animals.  

By August of 2020 Paws for Patrick was born.  We help families to find and acquire emotional support animals and can also provide some assistance for training.  We get them documentation from mental health providers so they can have access to their emotional support animals when traveling, in college dorms or in apartments or condos that do not typically allow pets.  Perhaps most importantly we bring trained therapy dogs to visit with young people who cannot have their own animals.  We believe in the power animals have to sooth and comfort.  We have the data that proves it, but typically the only evidence anyone needs is the smile of a child.  

There are those who are critical of the increased prevalence of Emotional Support Animals.  They feel that people are simply taking advantage of their desire to be with their pets and are misrepresenting their level of need.  I offer this perspective as a counter point: most people enjoy music.  Many people who have no diagnosed mental health condition use music to help them cope with difficult times in their lives.  For people who have mental health issues music often has a therapeutic effect.  No one finds these ideas controversial.  No matter how legitimate the need, however, if a person was blasting their music of choice to a level and degree where it was causing discomfort to others that is unacceptable.  Similarly we would never advocate for people with an ESA to be allowed to cause discomfort for others.  If there are some people who are doing that it is like the people who choose to blast music, some people are rude but that does not mean we should be critical of the concept of supporting people with animals or music.  Furthermore it is clear that the benefit of access to animals for not just people with mental health issues, but all people, had a tremendous net positive impact.  

When there are no words but there is a need for unconditional empathy, love and support, let an animal lead the way.  Paws for Patrick is still a small organization but we hope to grow and our goal is to never turn a family away (although we may need to say, not yet).  We can never balance the loss of Patrick but we can share his belief that animals can help when nothing else can and dedicate ourselves to spreading that love as far and wide as possible.  

Dan Maigler is a school social worker and therapist in private practice.  He is on the board for Paws for Patrick as a mental health advisor and hosts the mental health podcast Not Allowed to Die on Spotify.  

Acceptable Risk

Acceptable Risk

“Acceptable risk” is a phrase I’ve seen a lot, and as someone who tends to be afraid of a lot of things, my threshold for risk-taking is pretty low. My family has bribed me into bravery on a few occasions involving ziplines and roller coasters, but when I’m on my own, I don’t tend to take many risks.

Some contracts define acceptable risk in contrast to unacceptable risk, which places an individual’s life or health in immediate jeopardy. That’s how I tend to see things most of the time - I catastrophize, seeing the worst that could happen and using that as an excuse to not try things at all.

I’ve done it throughout my life with all sorts of trying new things. My new therapist, D., says that I do it out of fear of losing control over different things in my life. Just like when I play Dungeons & Dragons, I never know how the dice will roll - I can be prepared for success only to utterly fail, or vice versa. Randomness and chance will affect any of these decisions and accepting uncertainty is the only way to make decisions about these sorts of things.

I’ve been thinking about risk a lot lately thanks to two decisions I’ve made recently - to take a blacksmithing class, which I’ve started; and to potentially go to DragonCon this Labor Day weekend.

The decision-making process is similar for both: Both are activities I want to do because of my immense interest in nerdy things. Both would involve risk to my physical health. And both test my ability to think in a non-black-and-white manner to make a decision best suited for me and those around me.

For the blacksmithing class, the risk is simple to understand. There are 6 people in the room, no one is wearing a mask because of flying embers, and even though we’re not trying to, there are a lot of times when the instructor or his assistant get right up in our faces to explain something or show us how to handle our tools differently.

There’s a COVID risk there, and there are other risks, too. The other new students and I make a lot of mistakes where we hit with the hammers, and I know that if I hit myself hard with a hammer, I’d have one hell of a bruise and likely have to go to a doctor due to my blood thinners. There’s also all the sharp tools we work with and the forge fire, which I’ve burned myself on once already, but thankfully it didn’t do much more than create a large, gross blister and hurt a lot even after taking Tylenol.

It was easy for me to decide that those risks were okay. It also helps that I signed up for the class months ago, before the delta variant became a serious threat. I am fully vaccinated, but thanks to my long history of germophobia, I have become more worried that I could get COVID if I do something wrong.

The problem is, it’s impossible to tell what’s right and wrong. Everyone has their own definition of what they consider an acceptable risk to take at this time, and deciding about DragonCon is a lot more of a struggle.

It’s hard for me to explain exactly what DragonCon means to me, but it’s one of the few times I feel like I don’t have to censor myself at all. I can be as obsessive as I want about the things I love, and find other people like me who won’t judge me for who I am. I cry for joy so many times throughout the weekend and although I’ve never taken any drugs before, it feels like how I imagine a high would feel - and it’s a feeling that’s extremely hard to replicate in other ways.

The closest I can come is to describing it is a weekend of endless euphoria where the happiness is so intense I feel like a balloon about to burst, where my face hurts from smiling so much, and even without much food or sleep, I have endless energy to indulge in my passions in a way I often don’t let myself.

Still, though, there is no way for me to know if, by going to DragonCon, I would catch COVID. There’s no way of knowing if I’d get an “easy” case or a “hard” case. Even though the data says that my worst fear in this scenario - either having to go to the hospital myself or sending a loved one to the hospital by transmission - is extremely rare, it is still technically possible, and I’m not exactly new to experiencing medical things with low odds.

It’s strange to me, then, that I’d even consider going, when I’m so terrified of hospitals and medical things and being sick in any serious way. I wouldn’t consider going to any other gathering as large as this, but there’s something so special about DragonCon and what it does for my mental health that I’m feeling like I’m willing to take the risk to my physical health even though I am ordinarily far from a risk-taker.

I’ve been taking other risks working up to this point, and working on what “acceptable risk” means to me in what’s supposed to be a post-COVID world but isn’t. I have gone to a relatively crowded museum exhibit, I take public transportation regularly, and I have invited most of my friends over to my apartment individually or in small groups to hang out. I could catch COVID from any of those activities, theoretically. Or from going on the elevator in my building or walking down the street on one of my daily walks or flying home to visit my parents even if I decide not to go to the convention.

There’s no way to prevent the risk of COVID entirely except doing what I did last year - hiding in my parents’ house for weeks on end, not venturing out except to take walks outside, and feeding into my fear of going into public spaces of any kind to the point that I felt on the verge of a panic attack the first time I went into a Trader Joe’s last summer. 

I’ve spent some time trying to convince myself not to go, using fear and imagining the worst scenarios that could happen. Me on a hospital bed, not breathing, full of tubes and wires, dying alone. Mom, Dad, and Nana, all in the same situation because of me. But when I catch myself thinking that, I can’t help but remember the Cognitive-Behavioral Therapy (CBT) I’ve been trained in that teaches me to not think like this. That these thoughts are inaccurate or highly unlikely at best. That if I follow thoughts like this, I will never do anything, ever, and I will give up something that means so much to me for the sake of my own fear. I’ll be letting the “bad” part of my head win, something I’ve always strived not to do.

And so, I’m waffling. I do feel like if I go, I will most likely be safe from my worst fears, considering that I am fully vaccinated and the convention requires masks at all times, plus there will be significant cleaning protocols. But there is also the chance that I won’t be, and for me, it’s a matter of looking at recommendations from the CDC, advice from medical professionals, and medical studies in order to make a final decision.

In the meantime, I think of my friends who I haven’t seen in years, who I made a beautiful costume to dress up with. And then myself, sick. And then how happy I’d feel wandering around the nerd mall and dancing my feet off at the Tolkien dance party and singing in the elf choir. And then Nana, turning 93 later this month, vaccinated but becoming sick because of me. My brain is swinging back and forth so hard that it’s easier to not think about it. I have the plane tickets. I have the time off work. I lost the weight and made the beautiful costume and my friends are going. All that’s left is for me to make my final decision in the coming weeks.

It’s a decision only I can make, and as an adult, I need to be okay with the consequences, either way. I know that many of my friends and family members have opinions, but in the end, I need to come to terms with what I am okay with and make a decision based on what matters most to me.

At the moment, I have not made my decision, but I am really, truly hoping to go to DragonCon. If I go, I will take every precaution I can, including wearing masks throughout the convention, getting tested afterwards, and, if my family would prefer, quarantining in my room, social distancing, and/or wearing a mask at home afterwards. This might change in the coming weeks, but for now, I hope and pray that DragonCon will be a risk that’s acceptable to me.

Ellie, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

How To Tell When A Therapist Is Right For You

How To Tell When A Therapist Is Right For You

Some of my friends who are new to therapy don’t understand how I got to my place of extreme comfort with my psychiatrist back home.

I would tell my friends that it’s like Dr. H. could read my mind and knew what was making me anxious before I even told her what’s on my mind. She knew every little bit of my history, medical and otherwise, and always knew exactly what to say. I always left her office with a series of practical action steps to figure out everything I need to do to feel better. And, thanks to her guidance, I’d spent years only going to therapy a couple of times a year, something that helped me feel more normal.

But ever since I moved to Chicago - nearly three years ago - my parents have urged me to find a local mental health professional. My psychiatrist is uncomfortable with prescribing medicine across state lines, and she’s also not super comfortable with virtual appointments over years instead of as a special case in the pandemic. Even so, I put off the search for a very long time, afraid of having to form a new bond or being unable to find someone just like Dr. H.

After enough nagging, I started looking for someone new. I did introductory call after introductory call, getting increasingly disillusioned, and before the pandemic, I finally settled for a therapist I didn’t really like, if only to feel like I got my family’s pressure off my back.

The new therapist told me to give up whenever I asked her about anything. If I was frustrated at work, she told me to quit my job. If I was having trouble with friends or family, she told me to distance myself from those people or cut ties entirely. She never encouraged me to work on things, only to avoid what I didn’t like, often in unreasonable ways. And even though avoidance often feels good in the moment, it’s not good in the long run.

When the pandemic happened, and I ended up adopting and later returning a puppy, I knew that she wouldn’t be able to understand my mixture of guilt, shame, grief, and relief to have given up my puppy. So, after that incident, I made the decision to not return to her again.

That put me back at square one. But unlike last time, I utilized a resource I should have thought of right at the beginning - No Shame On U. I reached out and asked for a recommendation, and sent a short paragraph about my diagnoses and current things I’m trying to overcome to the doctor I was recommended to contact.

The doctor called me back right away, but with bad news. She said that I was too complicated of a case for her to handle and then gave me a recommendation for another doctor at a different practice.

I almost didn’t trust her. Why should I trust her word if she made me feel like all my hard work to be as normal as possible wasn’t enough? But I looked up the new doctor because she had a name that reminded me of Lord of the Rings. Corny, I know, but I sent that same paragraph in an email, already doubting that things would work.

But for the first time, they did. I did an introductory call with the nerdy-named doctor running the practice, and she made me feel valid in my concerns and like she could actually help me. She used a system like I had encountered when I sought emergency help in my breakdown seven years ago - she assessed me over the phone and matched me with a therapist.

I was wary - first of all, because I liked the doctor herself, and that was so rare. I was also nervous to see a therapist instead of a psychiatrist even though there is a psychiatrist with the practice who could help me with medication changes if I need that help. I was also wary because of the way she described the therapist she matched me with, D. - about my age, enthusiastic, with plenty of experience in trauma but not done with her degree.

In the end, I decided to trust this doctor and set up an appointment for an appointment with D. - and it’s been one of my best decisions in a long while. It’s been years since I’ve been to what I consider non-emergency therapy - the kind of therapy where I can talk about everyday problems on a regular basis instead of only seeking help instead of in the middle of a crisis. And it’s taken a few weeks of seeing D. for me to realize how much I’d missed it.

The first session had some of the awkwardness I was afraid of, some of the getting-stuff-wrong because D. didn’t know my whole history like Dr. H. does. But even in the first session, she was saying things that resonated with me. I started taking notes that first week and have continued the process ever since, and after a month of therapy, I’ve got a nice assortment of new ideas to try and things that work.

D. has a very different style than Dr. H. A session with her feels more like a conversation than me monologuing about things I’m worried about and then receiving solutions. D. is creative, knows new therapeutic techniques I haven’t seen before, and is full of gardening metaphors and knowledge about the brain to explain exactly why certain thoughts are happening.

Because I’m not seeing her as an emergency case, or only once every several months, I am able to talk about the little things that bother me. I’ve realized that, for me, wellness doesn’t mean ignoring the small things and waiting until they turn into huge things. I’ve felt so much calmer over the last few weeks since I’ve been able to tell D. so many things about daily occurrences that I used to brush under the table. She is able to see patterns in these occurrences and draw lines between them that I’m unable to do on my own, and instead of offering me general guidance about how to battle my negative thoughts, she walks through my thoughts with me in real time, so they don’t have a chance to build up and become terrifying.

D. is different from Dr. H. in a lot of ways. She’s peppy where Dr. H. is subdued, chatty where Dr. H. prefers to let me fill the silence, learning new techniques along with me. I realized that what I didn’t need was a copy of what has worked before, but a therapist who understands me at this stage in my life and is willing to help me get through the trauma I’ve faced and the negative thoughts I have on a consistent basis.

As for how to tell when I found the right therapist, I found it just as easy to know that D. was right for me as I knew that other therapists in the past were wrong for me. Everyone has their own style, and just because a therapist is right for one person (a coworker of mine loves the therapist I was seeing previously and didn’t like), doesn’t mean that they’re right for everyone. What’s important is to try different introductory calls, learn about different therapists and psychiatrists, and do it while you’re not in an emergency situation so you’ve got someone to go to when the shit hits the fan.

Even though I’m not at the point where I feel like D. can read my mind, I have gotten so comfortable with her that I have shared all sorts of things I didn’t think I’d be able to talk about with someone new. I’ve asked her some of my big scary questions, and she’s offered to help me with some things Dr. H. said she wasn’t the best person to consult about.

I’ve now seen D. once a week for a month, and I want to keep this new schedule. It helps me, during the week, to know that I don’t have to ignore things or bottle them up. I know I’m getting good help that works for me, and that my life is improving as a result. 

I can’t offer any generic recommendations. Everyone is different when it comes to therapeutic preferences, but I encourage people reading this to try to see what you like, and be flexible, and hopefully it won’t take long to find the right therapist for you.

Ellie, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.