I have never heard a story of cancer happening to someone who deserved it, like to someone who burned down hospitals and stole millions of dollars from charities. Cancer always happens to good people. The people who take care of others. The people who clean up the messes. The people who loved the most, who sacrificed everything, who gave so much of themselves, only to have more taken by disease.
My family always thought we’d be exempt from cancer. Not because we’re bad people, but because we’ve dealt with so many other chronic health problems and cancer isn’t as widespread in our family as it is in others. My dad had a melanoma run-in but had it taken care of quickly—we thought that was our designated family cancer scare.
This May, my mom was diagnosed with endometrial cancer. Even a month later and days before surgery, we don’t know exactly how widespread it is because it’s all tied to a poorly performed surgery 12 years ago. (My parents and the surgeons know more but I asked them to spare me the details, I can’t handle knowing everything.)
I’m still struggling with how to comprehend the news because put simply, my mom is my everything.
mom & me in our happiest place, at The Colbert Report
My mom is beloved by everyone.
At her graduation from Georgetown to get her Ph.D., she was so excited that she hugged every single person on the stage, including the sign language interpreter, and then danced off stage. She was the only person to get applause (and laughter) from the entire arena.
My mom is the life of the party. And if there isn’t a party to be had, she’s happy to sit around and find something to laugh at. That’s all she wants in this life—is to laugh at something.
My mom is the type of mom that would pull my brother and me out of school to go see the first showings of the Star Wars prequels when they premiered. She’s the kind of professor who throws pizza parties at the end of the semester. She’s the kind of aunt that welcomes her nieces and nephews to live with her whenever they need a place in the area. She’s the kind of parent who wanted her kids to have dogs so despite being allergic, adopted golden retrievers for her kids and took Claritin. She’s the kind of wife whose husband laughs at every one of her jokes after 30+ years of marriage.
My mom is the kind of person who says “thank you” in the form of handwritten cards and candy. My mom is the type of person who starts dancing to whatever is playing on the radio, wherever she is, much to my chagrin sometimes. My mom is the type of person who can make friends while walking in from the parking lot. My mom has more Facebook friends than I do.
She’s the kind of mom who will go back to work, even when she isn’t healthy, so her kids can see whatever specialist they need to and go to any school they want to. She’s the kind of mom who will fight tooth and nail with her child’s school administration day and night until they agree to grant them the Section 504 they deserve, even if it takes three-and-a-half years. She’s the kind of mom who will go to 7-11 in the middle of the night to get popsicles when her kid has a fever and can’t sleep. She’s the kind of mom who has journals full of notes she takes at her kids’ doctors’ appointments over the years, she’s there for every single one of them.
She’s the kind of mom who can be her child’s best friend.
My mom is the kind of mom who is a safe space, no judgment ever, love always.
she’s the caregiver, the matriarch, the ringleader, the boss
She has been my primary caregiver for 23 years. (As well as the caregiver of my brother and my father.) And she’s damn good at it. She’s learned the ins and outs of every disease, disorder and syndrome I have. She’s tracked down the best specialists for me and has endeared herself to them so I get even better treatment. No one can say no to her.
However, anyone can be my caregiver. But only she can be my mom.
And because she’s so her, and such a mom, she does not want to relinquish her title of caregiver, even for a few days.
Even while she’s coping with cancer, while she’s preparing for surgery, she’s taking care of me. Checking in all the time. Making sure I’m OK, physically and emotionally. Letting me rant, which I tend to do a lot. Feeling my forehead to see if I’m too hot because there’s something wrong with the air conditioning. Making sure I’ve eaten and Shannon, did you really eat today or are just saying you did because you can’t remember?, and letting the dogs out so I don’t have to. Being present with me and making sure that I’m present, too.
I am so mixed with anger, helplessness and gratitude.
Anger that cancer is happening to my mom, a woman who gives so much of herself to everyone: her friends, her students, her family, especially her children.
Helplessness that there is nothing I can do besides sit by her side.
Gratitude that she has not changed, she is still my mom, she is still there for me in ways I can’t repay. That so many people love her the way she deserves and are expressing it in ways that help her feel strong. That she has good doctors she trusts and therefore I trust. That I have my own friends who are helping me feel less scared or at least more normal when I do feel scared.
There’s a chance that this surgery on Thursday can get rid of everything cancerous, and I pray to every deity that it does so she doesn’t have to endure any more of this stress and terror. All I want is for the person who has invested everything into my life and into my family to be safe, happy and healthy.
Update, July 7, 2016:
Mom had her surgery on June 23. It was complicated, it was difficult, but it went exactly as planned. There were no signs of “major cancer” but they removed everything and had to send it to lab for pathologies.
We went to her doctor for her post-op appointment and he said she was totally cancer free.
Best. News. Ever.
He told my mom that she really lucked out–he was so sure there was something there–but everything came back showing that she was in the clear. He said that she made his day because he finally got to give good news! And he rarely gets to give good news to patients.
Greatest day ever.
Thank you for love, for good feelings, for good vibes, for hope, for everything. I send all of them back, amplified times a million to people on similar journeys.
Depression seems like it should be so easy to cure.
Go to therapy.
Maybe take anti-depressants.
Exercise, eat well and hydrate.
Think happy thoughts and avoid things that make you miserable.
Boom! Depression cured. It’s so simple.
Except it’s not that simple. It’s never that simple. Because depression is a monster.
I followed this routine for 12 years with occasional periods of success. Those periods were marked by success in school, new friendships, personal projects and laughter.
But overall, I had a lot of falls in my mental health. Over and over again.
Each time I would stumble and fall, my therapist, psychiatrist and I would consult and we’d create a new plan of attack. How can we approach this depression differently? What makes this situation different? What have we learned in the past that we can use now?
But by the time I entered my 20s, I was exhausted with picking myself up after these falls. Not only was I picking myself up, I was picking up over a decade of emotional baggage that I couldn’t shed no matter what I tried.
We considered different intensive treatment options over the years that ended up not working out for a myriad of different reasons. But in the fall of 2015, my psychiatrist proposed something new.
Transcranial Magnetic Stimulation. TMS.
He pitched it as a funky magnetic device they’d put on my head, my scalp would feel tingly, and afterwards my depression would be gone. It’d take a bunch of sessions but my depression would just go away after a while. Minimal to no side effects. The only catch was that my insurance might not cover it and it cost $15,000 out of pocket.
To which my psychiatrist added with a dejected look on his face, “I really wish you had $15,000 laying around somewhere.” (Don’t we all?)
We nervously sent in a request to our insurance and went around to my doctors to see what they thought.
As we learned more about TMS it seemed like the perfect procedure for me. It got my cardiologist’s approval—he wasn’t worried about any interference with my dysautonomia. My psychiatrist was excited about it, he couldn’t wait to see how effective it was. And my therapist loved how hopeful I was. She liked the science of it, she liked the promise of it, she liked my enthusiasm about it.
It took a few weeks to get insurance approval. I met all of their requirements:
I had tried Cognitive Behavioral Therapy.
I had tried four or more different psychiatric medications (there were specific rules about what types of medications they were, but I think I was on four anti-depressants at the time I submitted my request. I was more in the 25+ range of medications.)
My psychiatrist believed I would benefit from TMS.
The psychiatrist at the TMS practice believed I was a great candidate after reviewing my records and meeting with me.
The day I was approved by insurance, I cried so many tears of joy: this was happening. This was promising. This could be life changing. We’d start right after the new year.
TMS is the most bizarre medical procedure I’ve ever had.
this creepy chair will make you not depressed!
You go into a room and get into a very interesting looking chair.
They put a weird paper crown around your temple that velcros into the machine to hold your head in place. (I always thought it would be a really good base for a flower crown and considered taking some extras home and using it as such.) You put ear plugs in.
They raise the chair up and lean you back.
They put your head in place and align you with weird protractor looking tools that are attached to the chair.
They bring down the coil/magnet and place it against your head.
They bring down the counter pressure place it against the opposite side of your head to hold you in place and to make sure your neck doesn’t hurt from the weight of the magnet.
They turn on the machine.
It feels like a woodpecker is trying to get through your skull into your brain at first, then you get used to it. But nothing is touching your skull. It’s just magnetic pulses. It’s uncomfortable but not painful.
For my depression treatments, it’s five seconds of tapping followed by 25 seconds of peace (repeat for about 40 minutes) on my left side of the head. For my anxiety treatments, it’s a constant tapping on my right side of the head. (Of course, everything will vary by patient, by doctor, by machine, by facility.)
this machine doesn’t lend itself to taking good selfies, believe me, I tried.
Half way into my treatments, I met with my TMS psychiatrist and we decided to add in a second treatment (called bilateral treatments) every day for anxiety, because my symptoms of depression were getting better but my symptoms of anxiety were not. So every day, I had 40 minutes of !dundundundundundundundundun! followed by a break and repeat on the left side of my head and 40 minutes of a slow, !tap, tap, tap, tap! on the right side of my head.
(Above is a recording of a TMS treatment on the left side. It sounds like a machine gun, but it’s all magnetic pulses. No pain, just strange tapping feelings.)
(Above is my hand during one of my bilateral treatments on my right side for anxiety. My hands twitched a highly abnormal amount.)
I got to watch TV or listen to music during my treatments. I became friends with all of the technicians who would check in on me, ask me how I was, check to see that I wasn’t feeling too paralyzed while strapped into the chair and the machine.
I had almost all of my appointments (36 of them!) at the same time every day and fell into a comfortable routine. I’d watch reruns of Saturday Night Live on Vh1 and had a habit of laughing a little too hard during Weekend Update and would occasionally disrupt my placement in the machine—the machine would recognize that my head was no longer in the right place, sound an alarm, and the technicians would come back in, fix the positioning, and watch the rest of the segment with me because clearly, it was hilarious and worth watching.
TMS lifted the depression.
I started getting up a little earlier. I started making plans and schedules. I thought about things I wanted to do and took the steps to do them.
I was approaching problems exactly the way my therapist and I would practice in therapy. The negative voice that lived in my head was spending less time there. And when I was anxious, I had more energy to remedy the anxiety.
These positive steps started happening only two weeks into the six weeks of treatment. By the end of treatment, I felt better than ever. I felt like I was learning to walk on new legs—still nervous about this new life in recovery from depression, a little apprehensive about what post-depression life would be like, but ready.
At my final appointment, my psychiatrist in charge of my TMS gave me a few statistics to keep in mind.
Due to the severity of my depression and how long I’d been living with it, I had a 70% chance of relapsing.
But because of how successful TMS had been, I had a 90% chance of it working again if I got a second round of treatment.
I took those numbers to heart, repeating that 90% statistic every time I got nervous about relapse. I was high risk, but it was almost definite that I could get back to that amazing state of recovery again. We now knew what my brain required to get out of depression: it was TMS.
A month after TMS, (this March) I relapsed.
I was devastated. I was embarrassed, because it was so soon. I felt ashamed that it happened so quickly, as though it were somehow my fault. (I have since worked things out in therapy: obviously, it’s not my fault.)
I met with all of my doctors and we agreed that I should get back into TMS. Everyone agreed that TMS gave me relief like I’d never felt in 13 years and the severity of my depression just needs more intensive treatment. I needed a second round of treatment.
We sent the request into my insurance company and are currently in a battle with the appeals process because they deem it “medically unnecessary.” My insurance company is the only thing getting in the way of me and a cure for depression—because like most families, mine does not have $15,000 laying around to pay for this treatment. We use our money for things like food. And shelter. And paying for medical insurance that later screws us over.
I’m going to hold on to hope that the appeal will work out because I want to live life free of depression for longer than weeks at a time. I have an idea what I can be beyond my depression and it’s pretty great. I want to be be that productive, be that worry free, feel that light and think that clearly. I know that I deserve that. And somehow, it’s magnetic pulses on my brain that can give me that.
If you have any questions about TMS, please feel free to reach out, I’m happy to talk about my experience with it. And if you have any science based questions, hit up these resources:
I medically withdrew from college my freshman year.
Some of it was possibly due to physical stress (my undiagnosed POTS), but the primary reason was due to my depression and anxiety.
This is the full, gritty, unabridged version of my experience that I have never really gotten into. But because it’s Mental Health Month and graduation season and because it’s been four years since I left and because I imagine there are so many others out there just like me who feel as alone as I have felt–I want to put this out there.
At the beginning of my senior year of high school, I was completely disinterested with the idea of college. I’d say flighty things like, “I don’t even want to go to college, I just want to move to New York City and BE there.” At the same time, my depression was beginning to slip slowly but surely. I had a major meds change over winter break which led to a massive depressive episode.
I missed about a month of school because of my depression—my social life was the only thing that suffered more than my academics.
College still didn’t seem appealing, but I knew I had to go. It’s what 18-year-olds did. It’s what I was going to do, come hell or high water.
After a month of agonizing, I chose my college by flipping a coin in a shopping mall parking lot. It was either VCU or “making an informed decision.” Sure, the informed decision could have ended up being VCU, but I thought it might’ve been Marymount—close to home with a $15,000 scholarship. I had gotten into a bunch of schools in New York City as well, but I knew that wasn’t going to happen, not after the events of January. And February. And March.
learning how to be a VCU ram with apprehension (my natural state of being)
After all sorts of threats from my school administrators (“you need to get your act together!” and “you might not graduate!”) I graduated with a 3.7 GPA for the year and with a special letter in my diploma packet marking me an AP Scholar with Distinction. I had a smug smile when I shook my guidance counselor’s and assistant principal’s hands at graduation—it was never my intelligence or competence that should be called into question, it was always the depression.
My high school graduation, one of the happiest days of my life
I left for VCU on August 20, 2011. I was placed in disability student housing which got me my own room in an apartment style suite with one other girl who was nice but we didn’t really click.
I got a job my first week on campus as webmaster of the college newspaper. It was practically my dream job, it was the same sort of stuff I did in high school. I wandered around campus and tried to find things to do but was overwhelmed by my social anxiety. I tried. I tried so, so hard. But I wasn’t interested in partying and my dorm didn’t lend itself to open door policies where you could wander in a room and make friends. I was asleep, in bed every night by 11.
the school activities fair was larger than the newspaper conventions I attended in high school; it was easy to feel overwhelmed
I was close to a perfect student. I never skipped class. I did homework on weekends. I even joined study groups with random classmates around midterms.
But it was impossible to make friends.
I finally ran into two people I knew from high school—I was close with each of them at different times and they quickly became my favorite people in the world. We got meals together frequently and when I was with them, I felt like maybe I was getting a hang of this college thing after all.
a typical dinner: mixing up weird things at Panera and daring each other to drink it
My heart ached in ways I didn’t think possible when I talked to friends at other schools. They went on about how much they were loving college life and about all of the friends they were making. They’d ask me about the people I was meeting, they all expected me to have dozens of new friends and new experiences because I was pretty social at home. I didn’t know what to tell them.
I felt ashamed and embarrassed—I wasn’t good at the college thing, I needed to try harder, do better. I kept putting more on myself. But at the end of every class I was exhausted and wanted to pull into myself like a hermit.
I went to group therapy provided by the college counseling center. I kept in touch with people. I had a couple of friends. But it was never enough. I was never enough.
I went home as often as my parents were willing to pick me up. I’d blame it on things like, “I miss my dogs!” or “I need to do laundry” but that was never it. I just didn’t want to be alone, in my dorm, on a Saturday night at college.
At home, I still cried myself to sleep. It didn’t matter where I was, I couldn’t escape my depression and the feeling that I was failing at college, failing at being 19, failing at young adulthood.
Things didn’t go so smoothly when I went back for spring semester. I started skipping classes. I started getting headaches that altered my ability to walk, see and keep my balance. I started procrastinating and blowing off assignments.
I started to say things like “do you ever wish you could screw up in a really permanent and irreversible way?” often. It might’ve seemed out of the blue to the people I said them to, but it was on my mind constantly.
I needed something to change in a major way because I felt like I was going to explode at any given moment.
I remember one session in group therapy where I felt so unbearably low that I didn’t know if I’d ever be able to come back up for air again. I cried to myself the rest of the session.
I went home for spring break and saw my psychiatrist for a meds check.
I was blind to how awful things were at the time and I felt like he had punched me in the gut when he told me he wanted to pull me out of school for two weeks.
Panic shot through my body and I looked to my mom thinking, “can you believe this guy?”
I couldn’t believe that he was doing this NOW. I had begged him hundreds of times to pull me out of school as a teenager and he had never relented but now, now when my education mattered the most, he was finally doing it?
As I cried, he and my mom discussed whether or not medically withdrawing for the rest of the semester would be a better option.
I cried for hours that day because I couldn’t admit how bad things were.
I finally decided to medically withdraw for the semester after talking to my parents.
While I was home, they had both said “we support you whatever you choose” and “we want you to do what’s best” in as many different ways as they could think of. But when the three of us sat down together, they both said it with tears in their eyes.
I spent my entire childhood and teenage years sick in different ways–physically and emotionally. My parents were always worried and concerned, but I rarely ever saw them cry over me. They always kept their composures strong so I didn’t have to worry.
But this time, they couldn’t hold it together. They were in pain watching me struggle. It was like a bucket of cold water informing me, “this is serious.”
I went back to working with my regular therapist. We covered some topics that were painful to talk about but it was a relief to be back in my safe space.
My psychiatrist started changing my medications around in the hopes we could find a new combination that worked. In the meantime, my eating and sleeping were erratic despite my best efforts. My stomach acted up frequently. I cried all the time. But I knew things were going to change. It wasn’t like they were at school—I had my team of doctors and a constant support system with me this time.
I never made a formal announcement to friends that I had medically withdrawn—I considered it a need-to-know basis. I got nervous each time I said those words, “I medically withdrew” but it got a little bit easier each time. People were either kind or indifferent each time I said them.
I kept on going. I got a job. I tried to get over the pain of feeling like I’d failed not only at school but also at being young, being social, being alive.
Four years later, it still stings, but I’m feeling a little better. I know without a shadow of a doubt that I did the right thing but I’m sad that I couldn’t have done “the college thing” the way I had so stubbornly planned.
College has so many expectations tied to it. This is where you find yourself. This is where you make your lifelong friends. This is where you discover your passions.
I didn’t care about any of it at first, but once it was being torn from me, it felt like my entire world and my entire future were shattering and I’d never get it back.
I have thought about going back to school full time but it hasn’t been in the cards for me. Since I left, I’ve tried my hand at a bunch of different options. Working, going to school part-time, being a chronically ill patient full time.
Depression won this particular battle but that doesn’t make me weak. Leaving was necessary. Had I stayed, things only could have gotten worse. I left and got the help I so desperately needed. I left and realized that college was not right for me at that point in my life, even though I grew to want it so, badly.
The most important thing I learned is from my therapist who told me to give myself permission to mourn the loss of what was and what could be. She reminded me to not let it consume me, but it’s so important to acknowledge the loss—it’s OK to be sad over that. It’s natural to be sad over that.
I’ve used that in so many different areas of my life.
It’s a reasonable sadness. It’s OK to mourn the days, months and years of your life lost to depression as long as you don’t let it destroy you and you don’t hold yourself responsible for it.
I didn’t choose depression. I make choices every day that will create an environment where happiness and stable mood have the best chance at succeeding. But I also acknowledge that depression has taken a lot from me, all beyond my control. If depression wins some battles here and there, it doesn’t mean I didn’t put up a good fight.
I’m doing the best I can.
My path won’t be the traditional one I wanted, but it can still be great.
Happy Mental Health Month! And I do mean happy, because it’s an awareness month, and awareness should always be celebrated.
This blog is all about dysautonomia but I want to focus on topics relating to mental health this month. Dysautonomia does not necessarily mean you will experience a mental health crisis, but mood can be disrupted by the autonomic nervous system, as can life with a chronic illness.
Regardless of dysautonomia’s role or presence, mental health is worth talking about because the more we talk, the less stigma exists. Let’s take the stigma, examine it closely and then completely destroy it. Smash it into a billion tiny pieces. I don’t like it.
I try to write the words “I have depression” as much as possible on this blog.
I’m making up for all of the times I had the opportunity to say it in real life but felt too scared to open my mouth and say the words.
I was afraid that people would think me weak.
I was afraid that people wouldn’t believe me.
I was afraid that people wouldn’t understand.
I was afraid that people wouldn’t care.
I did say these words in doctors’ offices. I said them in hushed tones to new teachers so my classmates couldn’t hear. “I have depression and health issues, so this is a note from my mom explaining some of my problems,” I’d say at the beginning of every year to my teachers because my school refused to give me a Section 504.
But I rarely said those words, “I have depression,” to my friends and peers. A few times I wrote them out in a letter because opening my mouth to let them linger in the air was too scary.
I wasn’t as afraid to say the words “I have chronic anxiety” and “I have ADHD.” It was hard to hide those elements of me—I was a loud, sarcastic teenager whose nerves ran high and whose attention wavered. Those traits were readily demonstrative, I almost didn’t need to speak the explanation, but I did anyway. “This presentation is making me feel like I’m going to be sick, I’m so nervous, I can’t handle this anxiety,” and “I had to re-read the chapter three times because I couldn’t focus and couldn’t retain anything I was learning.”
Part of the reason the words “I have depression” and the associated explanations were so hard was because it didn’t fit my image. It didn’t fit the girl who would do anything to get the first and last laugh. It didn’t fit the girl who could recite episodes of The Office and The Colbert Report verbatim. It didn’t fit the girl who was a little more than power hungry on her high school newspaper.
Age 17. The face of chronic depression. (Photo by Miranda Leung)
Additionally, hiding depression to my peers came naturally for me.
I have a headache. I’m tired. Today’s just a bad day. (The “just a bad day” was the closest to the truth as I got in my excuses for a lot of people.)
I put on the brave face outside and broke down at home and in safe spaces.
The depression got to a point in high school where hiding things was no longer an option. I couldn’t keep up the charade. People could tell something was very wrong because my spark was gone and I was openly sad–I didn’t have the energy to fake it. I’d gone through depressive episodes before (pretty much one a year), but the episode my senior year of high school was more powerful and harsher than I’d felt before.
A friend from school was giving me a ride home one day and she asked when “the real Shannon was coming back.” I paused and said I didn’t know. It caught me off guard, in that moment I thought I was acting like Real Shannon. Turns out, during depressive episodes, I wasn’t fooling anyone.
This was the first time in my life that I had to face the reality of living an open and honest life… and it was terrifying.
I want to take the power back. I don’t want to feel like I have to hide because I’m afraid.
I want to be able to talk about all of my mental health conditions. That doesn’t necessarily mean that I will, but I want the option. Hiding yourself in fear is no way to live.
I started seeing my cardiologist in the spring of 2014.
When we first started working together, he wanted to see me ALL the time.
I was in there every two weeks for the first summer. He loved taking my blood (and my pee!), tinkering with my meds, giving me EKGs, doing all sorts of autonomic tests and watching what happened to the blood in my body when I stood for different periods of time.
Dr. A is the most thorough doctor I’ve ever had.
Over the last two years, we’ve changed the frequency of our appointments. I’ve never gone more than 3 months without seeing him or his wife, another cardiologist (They’re married and they practice highly specialized cardiology together and living the dream together? DOES IT GET MORE ROMANTIC?!) —
Since the initial “we need to learn everything about your body” intake period that lasted a full summer, I’ve seen them every six weeks. We’ve talked about my POTS, my EDS, how it interacts with my depression, my daily routines, my goals, my failures, my triumphs, everything. Their nurses and physicians assistants take the most extensive notes and patient histories that I’m fearful of how many gigabytes of data their servers are storing.
Yesterday, I went in for an appointment and my numbers are great. I still get splotchy and sweaty and thirsty and complain “GET ME A CHAIR” after two minutes of standing, but my heart rate no longer spikes 40 BPM from getting up. It only rises 20 BPM.
I got to go off of one of my meds. I didn’t ask to change anything else and my doctor reinforced, “yes, you definitely need to stay on Midodrine, you really need it” because of my blood’s propensity for pooling in my limbs.
But as she left (I saw Dr. A’s wife yesterday) (and not before ordering a 24-hour Holter Monitor, just because it’s good to do them), she said she’d see me in six months.
Half a year from now.
Even though feeling well should be the indicator of progress, not arbitrary numbers—that “see you in six months” was the arbitrary number that felt like the marker of growth.
I’m far from recovered, but I’m at a place where I can take care of myself, independent of my doctor. I’m stable. My aches and pains are unpredictable, yes, but they’re not out of control to the point where I feel like I need to go to a hospital. My nausea pops up a lot, sure, but I haven’t puked in a while. I get dizzy a lot, but I haven’t felt like I’ve been stuck in spinning teacups for quite some time.
And that is great.
I’m not in too much pain to the point where I can’t sleep. I’m not choking on food when I eat. And some days I have enough energy to put my laundry away.
So knock on wood, pray I don’t jinx anything, do all of those things to ensure that this doesn’t change.
Because seeing numbers change like that is pretty cool.