Dreams Deferred, Dreams Discovered

What happens to a dream deferred? Does it disintegrate, never to be replaced?

Sometimes it’s transformed into something new.

About a week ago, it was my one year anniversary of having to stop working and leaving my dream job, a full time professor gig I had worked for many many years to achieve.

It feels like it’s been a few months and a lifetime at the same time. And so much has changed in that time. My condition has declined considerably and my independence has been steadily chipped away. I’ve also learned to make peace with my illness and the world around me in ways I was never able to before. The bad is always tempered with the good.

This is the longest I’ve ever gone without working since I was 15 and the first time I’m not beginning the academic year as a student or a teacher since I was 4. This is brand new territory. If someone had told me five years ago that this is where I would be right now, I would have thought it was pure fiction—the makings of a great book, but not reality.

I’ve been dreading this anniversary. I knew when I saw my friends and former colleagues talking about the beginning of the semester on social media that it would be painful. But the anniversary passed when I was bedridden for weeks so I was distracted by surviving to really be overwhelmed by it. There was an upside to that at least.

I never imagined not being able to work. I never imagined being in this position, but I knew it was a very strong possibility for some time. The health issues started in 2011 and it’s been a decline ever since, and when things really started to change and go downhill in 2013, I knew I was inching closer and closer to this point. I was on an impossible path: working a few months at a time and then having to go on medical leave, over and over. It wasn’t sustainable and I regret taking my health for granted. I always expected to snap back each time I hit the wall and get to where I was before. But each time I hit the wall, I never fully recovered to where I was. Until I hit the wall too many times...

I treat my health as sacred now. My body gives me no other option. I know some of you out there are living this too. I used to avoid reading stories about people who had to stop working. I would see the stories in the health communities I'm in and just skip over them, saying “Nope. There’s no way. There’s no way. That’s not me.”

Perhaps you don’t want to read this because you feel the same. But I want to tell you that you don’t have to be afraid. There is so much that is beyond our control and all we can do is keep up the good fight each day. Do the best you can and whatever the future holds, you can face it like a champ. You’ve survived this long so you can continue to survive. The future isn’t pre-determined.

Statistically, about 25% of people with POTS are unable to work. I'm not sure what the percentage is for Myasthenia Gravis or other conditions. Many of us who are too disabled to work are young (if mid-thirties still considered "young"). We’re at the age when typically you start building a career, planning for retirement, building a family. Too young to have to spend most of our time in doctor’s appointments, rolling the dice with new medications, getting lawyers to appeal for disability benefits, trying to live life from a bed/couch.

When your worst nightmare happens, you accept it and you find a path forward. You have to remember it’s not the end of the world.

The path forward is what I’m focusing on now. My life has changed considerably. Instead of focusing my energies on a career, planning syllabi, working through piles of student papers, reading new research, I spend most of my time managing symptoms now. I plan doctor’s appointments. I coordinate my care. I portion out my medication. I plan for med changes (there are always changes). I use my inhalers at the right time every day so I can breathe. I stick to a strict exercise routine. I read. I write. I play music. I play video games and watch sci fi tv with husband. I see friends and family sometimes. I see how fast I can go down aisles in my wheelchair (who wants to race me?). I sit quietly outside in my yard and ponder the universe. I sing to my cats. I’m trying to make a good life around my limitations. I’m making it work.

A friend gave me shark bag for my wheelchair, Looks badass, right?

I live honestly and truthfully now. I’m no longerliving a lie. My normal has changed and that’s ok. I have a comfy couch at least. 

There is some emotional baggage that comes with losing your career. I won’t deny that. I imagine San Francisco International Airport has less baggage than I do. So much of our identities are tied up in work, career, independence. It’s difficult to unravel that to find out who you are without it and what your purpose is. I’m still trying to figure out what my purpose is.

But I have used some resources and tools to work through the baggage, work through the grief, and find a path forward. Here are a few:

1. I see a therapist. Talking to friends and family is helpful but I can see many of those around me with care-fatigue, the on and on of illness is wearing them down too. Sometimes you can't go to your support network anymore and you need professional support. Dealing with illness is exhausting on all levels and working with a therapist can help you attain vital coping skills. I have worked with one off and on most of my life and I had a really great one for the last two years, until sadly he moved. Now I’m starting over with a new one, which is daunting. Until science can create teleportation technology so I could I see him still, those are the breaks.

2. There are a lot of books out there about how to cope with illness, mental health issues, and difficult transitions in life. I’m working on reviewing each book I read related to illness as suggestions for others going through the same thing. You can find reviews in the “Spoonie Reads” section.

3. You’re allowed to be sad, to wallow a bit, and even to give up sometimes. That’s completely allowed. Working through the chaos illness brings to your life is a process that takes time and patience. You don’t have to make it look easy. You just have to find a way to keep fighting, whatever it takes.

My policy is to never give up when anyone is looking and to always get myself together in time to face the next day. Every day has new possibilities. I’m grateful to have the chance to meet them. Whatever you have to tell yourself to keep going. If you focus on the unfairness of illness and count your disappointments each day, it’s difficult to move forward. There has to be a way forward.

4. Find new hobbies and interests within your limitations. As an academic, I never had time for hobbies. It is an all-consuming gig. I played music but even that became a job as I would play in restaurants and weddings, etc. I even worked as an artist doing children’s artwork for many years. A lot of my hobbies became jobs at some point, so now I’m trying to find some joy in them again for myself. I have other things I’m interested in now that I had no idea I had a passion for while I was working. Now I have time.

5. Use online communities to help you feel less alone. It is easy to feel like you are suffering on an island of pure absurdity when you have rarely diagnosed conditions. Often times, you never meet someone in person who also has your disease. The online communities help you feel less alone, yet I try to use them sparingly now. It can get easy to get sucked into these communities and end up even more frustrated. Take some time away to live life. It’s easy to let illness become your identity, but it doesn’t have to be.

6. Remember what you still have and what you can still do. Besides finally finding acceptance and living authentically, learning how to feel gratitude has been the greatest lesson I’ve learned since I stopped working. My whole life my brain is always saying “what’s next? Where am I headed next?” but now I’m trying to learn how to feel satisfied for once. I try to live in the moment more. I have an overwhelming sense of gratitude that I draw from for strength on most days.

Although my life is very limited, I still have so much. I have an amazing husband, my family is rebuilding our bonds and moving forward despite my mother’s continued decline, I still have my creativity and passion. I am able to finally live within my limitations. There’s still so much to be thankful for.

7. When your dreams are dashed, you also have to make new dreams. Pining for the old dreams that are outside of my physical limitations is a fool’s errand. That will only lead to frustration. So I’m really working on creating new dreams and new goals. Everything takes some adjustment and I’m a professional at adapting at this point. I should put that on my business cards.

When I left my job and finally started to work toward acceptance, I realized that my ultimate goal in life was to be able to live a good life within the limitations of my conditions—instead of constantly having to push myself past my limitations. Whatever that looks like, that’s my goal. Everything else must fit within the parameters of this goal.

The dream deferred can rise from the ashes to take flight again. It just needs some coaxing and some determination. In the next part of this post, I’ll discuss what dreams and goals I’m trying to work toward now. 

Getting Around the Hard Things

Stephen Hawking is one of my heroes and I'm trying to live by these words. Last week was rough. All the hard things coalesced into a perfect storm, but I’m navigating it. Things seem to change with my mother’s health every day. I’m working on my disability appeal because my claim was denied (they determined I’m not technically “disabled”). I had to resign from my dream job. 

When I was diagnosed with Dysautonomia in 2012 and I started to look out into the ether to see how others coped and lived with it, I came across a lot of stories of people who had to leave their jobs and careers. I’m a workaholic through and through. I thought “no way. That won’t happen to me. There’s no way.” When I left the PhD program in 2011, I didn’t work for a year, but eventually when I finally got a diagnosis and treatment, I was able to go back to teaching. It was challenging to say the least, and I had to adapt everything I knew to make it work. I had varying levels of success. I’d have to go on medical leave usually every other semester because I had pushed myself too far, but I still anticipated having a long career. I knew things would keep improving, or I was at least convincing myself of that.

When a full time, tenure-track position appeared at the college where I was teaching, my husband and I debated whether the timing was right to apply. Getting a tenure-track position is a bit like winning the lottery in academia, especially if you transition from teaching part time. Only a tiny percentage of people finally make the transition, usually after working part time for many many years. My dream for the last 10 years was to teach full time at a community college. It’s the reason I made the crazy decision to get a PhD. I handed in my carefully prepared application and the next day had to go on medical leave for two weeks in spring 2013. This is when I started having trouble walking and breathing—issues I thought were related to pushing myself too hard and would resolve quickly.

Right before they announced interviews, my husband and I decided I would rescind my application. Then, I found out I got an interview; I could not bring myself to do it. I could not walk away from this chance to achieve one of my goals. I went through the process and somehow, some way, somewhere, actually got the position. I had totally just achieved one of my biggest dreams. No big deal. One of my friends who I went to grad school and worked as an adjunct with for years told me "you made it! you're the first one out of all of us to make it."

We were financially stable for the first time, and we started making plans for the future. But it wasn’t meant to be. My struggle to be able to teach full time is documented in detail on this blog so I won’t go into it. Yet, I have absolutely no regrets. I loved the time I had. It was my dream job, I was fulfilled, and I saw myself there until I reached retirement age. I loved the people and students I worked with, and I felt like I was making an imprint on the college, despite my health struggles every day. There’s something deeply satisfying about going from being an adjunct and using your car as your office to getting an entire office to yourself. I decorated it with Harry Potter nerdom and pictures of Yosemite. Only in academia can you really let your freak flag fly and legitimize your eccentricities by turning them into “research.”

I don’t know what’s next. I would love to be able to teach in some capacity again in the future but I really don’t know what will be possible. I can't even wrap my brain around working because I'm focused on being able to breathe, drive again, use my wheelchair less often, reclaim some of my independence, and leave the house successfully and regularly again. These are my goals right now.

My job title right now is “couch barnacle.” I’m a recovering workaholic who spends most of her days sitting. Our culture grooms us to equate success with money, and our identities become so entangled in our careers. It can be so difficult to disentangle your self-worth from these trappings of “success.” When that is ripped from you, it is challenging to not feel an overwhelming sense of failure. It takes some serious mental effort to work through that conditioning. Thank god I have a great therapist I’ve been working with for years now to help with that.

This story is not uncommon. I still read so many stories of people who lose their careers, have to leave college, or lose relationships because of illness. I’ve met people who have lost absolutely everything, but life goes on. Life presses on somehow despite how irrevocably everything can change in an instant. I’ve talked to many people who rebuilt their lives from the ashes and found happiness. They are truly inspiring. You can’t reclaim the old life. You have to make something new.

It’s difficult to avoid letting your worldview be dipped in a pervasive coating of bitterness when you lose so much to illness. It’s a constant struggle to avoid this and look at everyone around me who can work, drive, travel, do whatever they want without bitterness and envy. It can take root in your soul and it could take years to weed it out. I’m a die-hard pessimist but I have really learned how to value what I do have and redefine success on my own terms. These days, if I can vacuum our house or exercise for a few minutes I feel like I’ve earned 10 gold stars and handfuls of chocolate. That’s success for me right now.

My dream now is to live a life where I don’t constantly set myself up for failure and I live within my physical limitations and feel satisfied. That’s really all I want from life.

These are very hard things, but I honestly would not trade the wisdom I have attained over the last few years. I feel like a better person than I was a few years ago. My spirit feels stronger now than it has in years. 

Most of the time, I look at my life and I feel blessed and lucky. I have an amazing husband who is my best friend, my caregiver, and the love of my life. I still get to see friends and family sometimes. I have people I can rely on. I get to sit out in our yard with my cats and drink tea and read most days. Who could want more than that? I still have my passions that I have neglected for too long: music, painting, reading, writing. Terrifically blessed. It will take some time to really process and recover from this but time is something I have.

Despite having to resign from my job, the week had some bright spots. I had an appointment at Stanford with my neurologist’s Nurse Practitioner. I discussed how terrible my last visit at Stanford was and that I do not always feel like I have their support. Going there is often a crapshoot it seems. But this appointment was great. She took my symptoms seriously, and before we left she told me “I’m pulling for you.” I left there feeling like I had support and some hope. The medication I started a few months ago, Mestinon, is really helping my breathing and fatigue issues and they want me to start taking more. She gave me some recent research about POTS and exercise which I will share on this blog once I get through it.

Got my #hospitalglam on while I was at Stanford. Blue compression stockings. Purple cane. Jaunty butterfly scarf

I also saw a Pulmonologist last week. She was kind and thorough and she believes my breathing problems may be related to muscle weakness, a common symptom of Myasthenia. I have another lung function test next week that will give more information. While I was there, she had me try a brief test to see if I had asthma. I had to breathe into a machine that looked like an old Gameboy with a picture of a cloud on it. My husband does a hilarious impersonation of the sounds the cloud made. I wish I had that machine to bring out at parties. No asthma but she explained I will probably get a machine to help me breathe at night but hopefully I won't have to use it during the day too. I don't want to be part robot during the day time as well.

I’m thankful these appointments were uplifting. I needed a win.

Now I go back to my normal life of being a couch barnacle, watching videos of live concerts and documentaries about prehistory on YouTube, being aggravated by American politics, and worried about the state of the world. I want to start thinking seriously about writing my book, finishing recording my album, and getting back to participating in the world again. 

With a hope that keeps burning on an altar of faith and perseverance, unrelenting and determined to burn even brighter some day

One More Test

I’ve been dreaming about quitting my day job as a disabled couch barnacle to be a more productive member of society again, go back to teaching or become an archaeologist, a scientist, or a jazz vibraphonist. Or all of the above.

But in the meantime, I’ve still got work to do. I’ve been writing about the saga of getting a firm diagnosis for likely Myasthenia Gravis for some time now and mentioned that I had another test last month at Stanford.

I had hoped to come home maybe with something definitive. A label to provide a tangible explanation.

But it didn’t happen.

I haven’t written about it because I needed to try to get my brain around it, try to logically work through the anger and frustration, so that I don't unleash it into the world. No one needs to see that. I was in a dark place last month and the holidays weren’t the real reason I took some time off from writing. I was seriously depressed. I’m doing a little better now but it waxes and wanes. It’s something I’ve battled my whole life and this strange ride through illness really amplifies it. Not even all the chocolate in the world can pull me out of it, but a little doesn’t hurt.

My husband and I made the long trek to Stanford so that I could do a Single Fiber EMG, an EMG that is specific to MG diagnosis. It wasn’t the test that disturbed me (more giant needles. Been there done that. Whatev). My doctor said that I couldn’t take Mestinon for 24 hours. I’ve mentioned before that I’ve been having a lot of difficulty with breathing, a common symptom of MG. More than anything, the Mestinon is helping this symptom. I’ve grown fond of breathing. I’m accustomed to it now. Please don’t take it away.

I had already cancelled this test once. It had to happen. I booked us a hotel for multiple days. I can no longer make the trip to Stanford in one day. The hospital is only about 2 hours away, but with Bay Area traffic, we often spend 6-7 hours in the car. Along with a few hours for an appointment, it’s just way too much for me now. Sadly, my body requires that I treat it like the delicate flower that it is. I needed extra days this time so I didn’t have to travel while coming off the Mestinon. I bought some oxygen designed for athletes. I packed some books, some movies, my shower chair, my wheelchair, and we said goodbye to our cats and headed out.

My husband is a master organizer and packer. All those years paying Tetris really paid off for him

I splurged a little on the hotel since we had to stay there a few days, and it was worth it. It was an adorable little hotel and each room had it’s own enclosed patio. They even gave us the handicapped room, though I think the only difference was that it had a shower chair. We ate over-priced, underwhelming take out, re-watched The Lord of the Rings, my husband slept all day, and as the Mestinon wore off, the breathing difficulty and weakness intensified. Yet, I didn’t have to do anything but sit in that hotel room, read, and hydrate. It wasn’t a vacation but it was definitely ideal.

On the day of test, I put on my finery (workout pants and a loose fitting sweater) and we headed to Stanford.

They called me in and told me to lie on the table. I had flashbacks to exactly a year earlier when I did autonomic testing and a regular EMG in the same room. I thought that EMG was a breeze. They warned me that this one would be more painful and take much longer. They weren’t kidding. The needle had to be placed deep in the muscle and held for 20-30 minutes for each reading. I had to slightly flex my ankle or leg so they could get a reading of how the muscle was responding. By the end, I was convinced I had sprained my ankle. Once they removed the needle, it snapped back. It was fine.

They told me to dress this way so I couldn't get my #hospitalglam on unfortunately

My doctor oversaw the test but it was a different doctor I had never met before who performed it. My doctor came in periodically, making jokes and being jovial as usual. When they finally finished, he read the results. “Slightly delayed but normal.”

 Everyone in the room turned to me and said “Aren’t you relieved?”

I was not. No. I was not. It didn’t matter what the results were. There’s no way that I can accept losing most of my mobility rapidly over a year as “normal.” Or waking up repeatedly in the middle of the night because I’m not breathing as “normal.” What I’m living is anything but “normal.”

Honestly, I wanted to scream. I had made a detailed list of my symptoms before the test since I hadn’t been able to talk to this doctor since May. I wanted to tell him about how much I have declined since then. How I can barely leave my couch or bed. I just wanted to be heard.

Someone in the background said “your next patient is here.” They wrapped everything up and my doctor started leaving. I asked him to wait and tried desperately to compose myself. I was angry and frustrated. I hadn’t gotten a chance to say anything. All those notes I made and I had to try to quickly condense it into a few seconds.

I work hard to maintain a calm, collected exterior in appointments and tests. This is important so you can communicate and to avoid that pesky label of being “overly-anxious.” I lost my cool. When my doctor looked at me, he must have seen it because he asked me, “are you going to punch me?”

I tried to explain the symptoms I was experiencing and my confusion. I had tested positive for the antibodies for Myasthenia (which aren't a false positive for anything else), I had the symptoms, and they were already treating me successfully for it. If it looks like a duck, quacks like a duck, isn’t it a duck? He explained he was hesitant to provide that diagnosis right now. He doesn’t want me to have to start taking a long-term steroid. I understand this, but I don’t understand why we can’t just put aside the song and dance and just finally label the darn thing. 

He said we should do the antibody test again and perhaps the results of that would change the diagnosis and mentioned I should do pulmonary function testing. The results of my antibody test showed that they have doubled. I should probably contact him to ask about it, but I haven’t. 

I knew better than to have such high expectations for one test. This was one test in years of endless testing. I forgot that this is a process. There are often no delineating lines between symptoms, testing, diagnosis, treatment. They overlap and intersect. But this one time, I just wanted something solid. Just this one time. For once.

I was in bad shape at the end of the test. I was off my medication for over 30 hours, had just been tortured, and was exhausted. Yet, I still deeply regret losing my cool. Often when you are doing testing and even during appointments sometimes, you are just a body in a room. Doctors talk about your body to each other in front of you. Motion to your presence. You sit there silently trying to absorb the medical babble to listen for something familiar or understandable. The process can be incredibly dehumanizing.

I don’t regret trying to make my voice heard. The physical and financial costs for me to get to that table were significant for my husband and I. I don’t get to see this doctor again until May. I can’t keep waiting. I can’t keep suffering with no answers and no response. I wanted to be heard. I wanted to maintain my humanity and give voice to the experience of this body.

Another disappointing test. I cried most of the way home. My husband keeps asking “why does a diagnose matter so much?” I wrote a post about it here, but there’s more. There’s something very material about a diagnosis that counterbalances the nebulous, invisible experience of illness. It’s an explanation, a satisfying answer for my broken body and spirit. It isn’t the end game, but it’s a means to move onto the next stage in the journey, open possibilities for treatment, and I could finally put the label on documentation.

So I came home and went back to my job being a couch barnacle. Maybe I’ll make employee of the month soon. I'm still waiting and waiting for some answer. Still dreaming and fighting for a better tomorrow still.

Next week I have another test, pulmonary functioning test. I hope that I can finally have some proof for my breathing difficulties, but I’m not holding my breath (see what I did there). One more test. Not the last surely. Not the end of this journey, with miles to go before I sleep.

The Beginning, Again

I am experimenting with narrative in this post. One of my goals with this blog is to mentally fit the pieces of the strange adventure I have been on together. This is an extension of my very first post and a look at how this crazy ride started:

“You didn’t have a heart attack. You can go back to school.”

Those words came after many appointments and discussions with Dr. Z, who had offered an embrace after every visit while promising his support. He was a young, handsome doctor who wore a sharp blazer instead of scrubs or the conventional khakis. His office staff always looked ready to go to a club after work. I was convinced the girl who prepared the EKG for me every visit was younger than my college students.

I had been seeing this doctor for months and had just informed him that despite the many times he answered my litany of symptoms with comforting suggestions that everything I was experiencing was “stress,” I had no choice but to leave my PhD program and stop working. I was unable to keep food in my body, I couldn’t safely drive because of the dizziness, my heart rate never dropped below 100 bpm, I was unable to stand, I had lost 15% of my body weight. What other choice did I have? I wanted to believe him, but these were the facts.

I actually initially liked Dr. Z. I made my first appointment with him out of pure desperation.

My husband and I moved to Nevada in 2010 so that I could start working on a PhD in literature, a goal I had been working towards for many years. The winter of 2010 had record snows in Nevada, and January of 2011 started out icy and cold. My husband and I adapted well to living in the snow and I actually liked when it was below 10 degrees in the morning and I made the long trek to the department to teach my freshman composition classes. The cold wrapped around me like a frosty breath, and the snow muffled the grimy bustle of Reno. It was almost beautiful.

I was working toward my second year as a PhD student in 2011, a time to really choose a path that would define my academic career. But something was wrong. I could feel it in my bones that something was wrong.

Constant headaches. Entire nights without sleeping. GI issues making it impossible to leave the house. Exhausted. Dizzy. Working on a PhD will bring out or aggravate any latent health issues. It will wear your soul thin. I was starting to think what I was experiencing went beyond the stress of the academic life.

I was an old, injured gymnast at 14 and then was seriously injured in a car accident at 21. When I was 25, I was diagnosed with fibromyalgia and started living with constant migraines. I’ve never been in the greatest health, but I always managed to never let it hold me back.

But this felt different.

I was trying to push it all to the side and keep my head above water. One memory stands out in the blur of early 2011. My university hosted a group of famous scholars, and all the grad students were gathering to attend the talks and meet them. I remember standing at the desk I shared with two other TAs in the basement of the English department unable to focus on anything because everything was spinning. I knew I was going to throw up from the dizziness. I could hazily detect someone in the background asking “Are you coming?” I walked the half mile back to my car and drove home.

I had to miss some of the classes I was taking and some I was teaching. All my life, I never called in sick to work. Never. No matter what I was experiencing, work was always a top priority. This wasn’t me.

Another memory stands out. Because all events in graduate school and academia seem to revolve around alcohol, one of my professors decided to hold our last class meeting in May at a restaurant so everyone could get wasted. I showed up but didn’t drink. I remember sitting across from my friend and trying to laugh and joke with her but the whole room was spinning. My professor had a drink that was an entire bowl of liquor, designed for multiple people. He finished it by himself and ordered another. Most of the grad students left the restaurant to walk to everyone’s favorite bar to continue the party. I had my husband pick me up because I didn’t think I could drive from the dizziness.

Two weeks after this I ended up in the hospital. As is often the case in my life since getting ill, the semester ended and I had collapsed into a puddle of sickness. My husband went to bed early one night because he worked at 4 AM every day, and I walked into our bedroom shaking and weak. I told him something was wrong. He felt my pulse and called his mother who is a nurse. We drove to the hospital.

They clocked my pulse at 175 when we got there. If you ever don’t want to endure the long wait at an ER, show up with a raging pulse. You’ll be fast tracked to a room and a CT scan.

The young doctor came into my room and I explained the bizarre symptoms I had been having, and he handed me an Ativan. I was dehydrated from the constant diarrhea. After an IV and hours of resting, he looked me in the eyes and said, “You had a panic attack. You can go home.” I know now that even with a diagnosis, many POTS patients are often told they are having a “panic attack” by ER staff. I didn’t know any better then.

Days after this, I couldn’t lie on my back anymore in bed because my heart was pounding so hard that I couldn’t comfortably sleep. This is normal, right? No, this isn’t normal. But, am I wrong? After leaving California, I had neglected to make appointments with new doctors unless I desperately needed medication refills. When you’re taking three classes, teaching two, and working seven days a week to keep up, there is no time for managing your health. I let it slide. I was busy.

After the ER visit, I made an appointment with a primary doctor everyone recommended, Dr. Z. I wanted to see some specialists. He instead told me, “I can manage this. Don’t worry about it.” I wanted to believe him.

The medication I had been taking for years for migraine prevention was causing tachycardia suddenly. He had me stop that med and start another, which also made my tachycardia much worse. After many visits where my vitals were always anything but normal, he finally referred me to a cardiologist.

This cardiologist had an unpronounceable name. I checked in to his office and as I sat down I saw the office attendant lean over and comment to another attendant about how young I was. Being the youngest person in the waiting room to see specialists is common now, but it terrified me then. That cardiologist told me “it’s just stress. Stop drinking coffee.” You can’t stop coffee if you’re a grad student. That’s a death sentence. I would wake up in the morning that summer and take my pulse. The monitor would show 140 bpm and I would roll my eyes and then drive to Starbucks.

He ordered an echocardiogram, which was my first experience with disturbing medical tests. A nurse pressed sound waves into my chest and I stared at a monitor inches from my face that intimately and vividly displayed my beating heart and veins. It was like an initiation ceremony into the many medical tests over these years and the ever-constant reminder of my own mortality and vulnerability. It was the beginning of a glamorous life as a lab rat. I have a poem about it here.

There were some good times during this mess. That summer, my husband and I got a few hikes in, including one in Tahoe with some close friends. One of them lost his glasses in Lake Tahoe and we spent the day searching the murky waters looking for them while laughing. I was teaching a summer class with underprivileged high school students who wanted to earn college credit early. I was ill and wearing a heart monitor under my clothes while I was teaching, but that is still one of my favorite classes I’ve ever taught— probably the most rewarding. My husband and I saw the re-release of The Lord of the Rings in the theater. In a packed theater of fellow nerds and grown men in homemade chain mail, we communally cried through every bit of it.

These happy memories are filled with color and vibrancy that contrast the other memories of that year that are a grey haze. I didn’t know then that my days of hiking were coming to an end.

Summer ended, fall semester started, and I pushed all the health stuff to the side so I could survive another semester. Yet, by the end of October I had gone from 135 pounds to 116. I was unrecognizable. Handfuls of hair were coming out of my head. I was still trying to show up to my classes and to teach. All of my time was reserved for that, so I couldn’t find time to fit any appointments with doctors in. I felt powerless, hurtling toward disaster.

I emailed the head of the grad program on November 2^nd to tell her I had to go on leave. My psychiatrist, the only doctor who took me seriously then, gave me the note so I could go on leave. I should be sending her flowers every month still.

I won’t lie and say I enjoyed working on the PhD in literature. In fact, I had already been contemplating leaving.  I had been initiated into a world that was incongruent with my real desires. I’ll reserve my true criticisms of it to say only that in that world you pledge your fealty to an academic plutocracy who throw mere crumbs of glory for every ounce of 70 hour work weeks and neglected relationships you put in. That glory becomes something of a drug, a drive for validation. I learned the real meaning of “diminished returns” doing that work. There were many times I wanted to stand up and have a Fiona Apple moment, proclaiming that "this world is bullshit."

But I got out. I feel like a cult victim sometimes looking back, thinking “what kind of screwed up mind game was that? What were those bizarre rituals? How many sacrifices did I participate in?” Some people are well-suited to academia. More power to them. All I wanted was to get back to my real love—teaching—where I could see the fruits of my work in my student’s lives, without the distraction of pretending to be a scholar.

After I finished my MA in 2008, I taught as an adjunct at two community colleges. My plan was to take time off and apply to PhD programs with the ultimate goal of teaching literature at a state college, where I could bask in the splendor of teaching and research. I was a bright-eyed, newly-minted MA thrown full force into the life of adjunct. I learned that I had a real passion for working with developmental classes (below college-level). I enjoyed teaching despite the grueling life of an adjunct and driving 150 miles a week commuting between the colleges. I had a new plan: get a PhD and teach full time at a community college. That was my dream scenario.

So I focused on studying for the GREs and preparing applications as I was teaching. My entire life, I have always been preparing for what’s next. I have never felt wholly invested in anything because I was preparing for some determined, carefully planned future. If illness has taught me anything, it has taught me that a “carefully planned future” is an illusion. Life makes other plans and you have to roll with it, but I hadn’t learned that lesson yet.

I look back at this time between 2006-2010 as some of the best years of my life, but I regret not being more present. I had a rewarding job, my husband and I were hiking all the time, I was surrounded by my friends and family, I was playing music and performing regularly. But I relented to the nagging “what else?” that looped in my brain. Ambition is a vehicle that delivers you to your goals but it can also blind you to a fulfilling present. I had no idea that my days of enjoying those passions were going to violently end. If I had known, I wouldn’t have wasted the last of my pre-sick days in grad school. Some of my bitterness about grad school stems from this hindsight view, but I’ve tried to learn lessons from lamenting lost time.

When I left the PhD program in November 2011, I started an arduous journey through the absurd labyrinth of the medical system. I rejected my primary and my cardiologist’s assessment that all I was experiencing was “stress.” I started a two year cycle of going from specialist to specialist looking for answers.

In total, I have seen four cardiologists, three neurologists, three gastroenterologists, two endocrinologists, two dermatologists, one rheumatologist, two primary doctors, two psychiatrists, two psychologists. There’s more, but that’s what I can remember at least. I should turn this list into a “12 days of Christmas” parody and call it the “12 Referrals of Illness.” I would have 3-5 appointments a week during this time, which was grueling while I was ill.

One of the buildings I had to visit regularly for appointments made me uncomfortable. Even the sight of it right now would make me shudder. Walking into it, you would suspect the building was surrounded by Dementors. I was always the youngest patient in that building by at least 30 years. One day while riding the elevator up to the second floor, a young UPS driver got into the elevator with me. As the door closed, he leaned over and said, “coming here always makes me really scared to get old.” I was thinking the exact same thing at that moment. My husband swears he had a zombie encounter in one of the waiting rooms while I was in an appointment. I had entered a disturbing world many young people never see.

Despite the constant appointments, endless vials of blood work, and co-pays, I was getting nowhere. Some doctors recognized the extent of my health issues but my symptoms were outside of their expertise. Shuffle her off to another doctor. Some doctors continued to dismiss me.

I saw an endocrinologist in the Dementor building who patted my head and said “you’re fine.” Before he walked out of the room, he listened to my heart.

“Huh,” he said. “That’s strange. The heart should accelerate when you inhale but yours is over accelerating. This may be an autonomic issue.” This was the first time I had ever heard that word. Again, this was outside his expertise. He sent me on my way.

My rheumatologist convinced me to see another cardiologist because she thought my excessive heart rate was still concerning. When I walked into this cardiologist’s office, my pulse was 135 and my blood pressure was 70/50. I was trying to hold onto consciousness when I drove there on a snowy, icy day. He mentioned the word “POTS.” He told me to stop taking all of the drugs my primary had me take because they were making me worse. Yet, when I saw Dr. Z again he tried to convince me to stay on them.  I stopped taking orders from him.

Not long after I left school, I had convinced my husband to move back to California. He thrived in Nevada. He was shooting in the desert every other day, and he loved his job and the people he worked with. But every time I left my house, I felt a blanket of failure wrap around me. I had to get out. I wanted to go home, rest, recover, and reclaim my life. We made a deal and my husband started the process of transferring back to California. We still discuss moving back to Nevada because he loved it so much.

We moved back home in March 2012. I was happy to leave Dr. Z. To this day, my husband swears if he ever ran into him in public he would physically harm him. Someday when I write my book, I want to mail him a signed copy. His lack of care (literal and figurative) set me back in my diagnosis at least a year. Unfortunately, I have learned that many Dysautonomia patients have a “Dr. Z” who dismissed them, made them feel crazy, and were an obstacle on their road to diagnosis. I hope that someday, with more awareness, this will no longer be a typical story.

In my youth, I liked to dream. If I had to ever go hungry, I swear I could subsist on my idealism alone. That idealism was the driving force for most of my decisions in life. Over the last few years, those possibilities and the vastness of those dreams have narrowed and narrowed—until now I can fit them in the small of my hand. Yet, life can take you in unpredictable directions sometimes. The strength you obtain from surviving that unpredictability is worth every battle scar in the end. 

The story doesn’t end here obviously. The adventures continued when we moved back to California in 2012. The road to diagnosis is long and winding (and I’m still on it). That story is forthcoming.

Celebrations

So it is my 34^th birthday today....a very sassy 34

My birthday is a weird time of year since I got ill. POTS entered my life in 2011 and things started to go rapidly downhill for me around my birthday that year. I was still pushing through the PhD program and everything hit critical mass that fall. By October, I was fighting so hard to pretend everything was ok.

By the time my birthday hit, the gig was up. I left the PhD program on November 2^nd 2011 and life looked crushingly uncertain. It’s three years later and I am in the exact same place, at rock-bottom and gazing wearily once again at a very uncertain future.

So yea, my birthday is always a strange time. I am constantly measuring time and illness—thinking “this time last year I was better. I was able to do this and that.” Last year, we had a party at our house because my BFF and I celebrate our birthdays together since they are so close. We had a good time and danced a little. I had finished my first evaluation as a full time professor and did so successfully despite being putting on a brave face while ill. I felt badass and accomplished. I inhaled some decadent chocolate cake in celebration.

This year is completely different. I'm not working. My new office I prepared during the summer is sitting empty. There is no dancing. Instead, I spend my days asking myself “Can I safely drive, shower, prepare a meal?” "Am I able to walk to my kitchen?" I sit on my couch or lie in bed and ruminate on life, surrendering to this opportunity to recover an authentic self. 

My goal was to just show up and be present for my birthday gathering this year. I did have to lie on my friend’s bed through part of it, but I showed up and had a good time. I missed everyone else's birthday this year but made it to my own at least. We sat around and talked about the absurd things we always talk about. It was glorious.

I’m trying to remember that measuring is not living. Pretending is not living. 

My circumstances may be similar to three years ago but my outlook is changing for the better. Although this year has been an endless roller coaster of struggle, I’m working on bringing joy back into my life, which has been absent for years now. Climbing the academic career ladder and fighting a devastating illness blinded me from the things I used to love. When your body is just holding onto mere survival, there isn’t much room for anything else. But I am trying to re-discover the things I left behind.

I’m working on celebrating life and finding small pieces of joy in it by reclaiming my creative spirit.

Like music. I finally finished some songs I’ve been writing for years now and even got one recorded this summer. Music has been my guiding light for most of my life. I may have degrees in literature, but music is more important to me than any piece of literature. I desperately miss performing, but I still play and sing almost every day when I am able. I used to play in restaurants, bars, and weddings, and I took being able to perform for granted. Now, when I get the chance I really savor it. My dream is to record an album of all originals. It’s my number one life goal, and it will happen.

You can hear the recording of "Upright," which I wrote as a reminder to myself of my strength despite my limitations. 

I am listening to my records again. I have been listening to vinyl for the last 15 years, before it got cool again (I am such a freaking hipster). I’ve dragged this collection over state lines multiple times. I’m rediscovering records I haven’t listened to in years.

A few of my favorite things: vinyl records, Harry Potter, twinkly lights

I’m drawing and painting a little again. Just a little. 

I studied American literature, but since I left school all I’ve been reading is fantasy literature. I am reveling in reading whatever I want. When your body refuses to let you move, reading can be transportation.

One benefit of being ill (there are a few) is being forced to be still. I’m a workaholic, so this is anathema to my nature. My brain used to be constantly in motion preparing for what was next and what else I could achieve. But now that I’m regularly bed/couch-ridden, I must lie still and just exist in space. I remember the flavor of life and the pulse of community.  I am given time to reflect—to be truly tethered to the present. This has been transformative. I crave the things I genuinely love, relinquishing the trappings of adulthood that can blunt so many of our real desires.

It’s an opportunity to peel away the layers of self we build to present to the world to instead find a truer self, one that has been lost in the saturation of daily life. It’s been a chance to say I survived going over the edge of the cliff, a chance to observe with clarity and then ask myself, “What do I really want? What meaning can I make from this experience?” 

This sounds hokey, but it’s a reality I’m living. It’s brutal and harsh but beautiful and worthy of celebration as well.

I was a writer before I was anything else. I came to music as a writer. I became an English major because I’ve loved writing and pursued an academic career on the strengths of my writing. Starting this blog and writing again feels like a rebirth and celebration of what I still have and what I have learned. It is the gravity that pulls all the random pieces to make them unexpectedly fit together.

Even in the darkest of times, there can be an opportunity for celebration. Today I celebrate what I have overcome and what I’ve endured. I celebrate who I am, those I love, and all that life gives and takes from us that is truly worthwhile.

The even-numbered years seem to have a better track record for me. I'm letting go of the things that don't matter. I'm bringing the sass. Let's do this 34 

I even ventured outside briefly today. The demon in the background appreciates the sass