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.