The Will to Keep Going

Too much.

I’ve mentioned throughout this blog that my mother’s health has been declining over the last year, and the last few months she went downhill rapidly. She had to stay with us for a little while earlier this year, but I couldn’t be a caregiver to her because I rely on one myself. This is part of the reason why I was bedridden throughout the end of January and all of February.

I removed myself from the situation for awhile to try to get my strength back, which worked, but she took a sudden turn for the worse during that time. My step-father had to move her into a long-term care facility. She’s 60 years old. It doesn't make any sense.

I’ve tried to help and be supportive to my family, but I'm trying to push through my own challenges.

I’m still dealing with having to resign from my dream job and convincing the disability insurance company that my wheelchair and sedentary lifestyle are not ornamental.

I thought I was navigating all of this with equanimity and then last week I got a message from one of my doctors that sent me over the edge. All of it just became too much. 

I’ve been doing testing for my pulmonologist to identify my breathing issues, especially in relation to my other symptoms. I did a spirometry (lung test) a month ago that was very abnormal. It showed the difficulty I have trying to inhale, so my doctor suggested doing a longer version, which I completed last week. She sent me a message a few days ago with the inexplicable words “everything looks normal.” It may sound strange to be frustrated by “normal” test results, but when you’re trying desperately to get a diagnosis, it can be a punch in the gut, especially when it makes no sense.

The thing that I’m really frustrated about is that I listened to my doctor. For the first lung test I didn’t take the Mestinon, which I have become dependent on to be able to breathe somewhat normally, and the results were very abnormal. For the test last week, my doctor insisted I take it, even though I explained to her my concerns that it would skew the test. And then the results came back normal. I knew I shouldn’t have taken the medication.

I’m in a bit of a predicament. I tested positive for Myasthenia Gravis, I have the symptoms (mobility problems, weakness, fatigue, difficulty breathing), and I’m being successfully treated for it (Mestinon), yet I don’t have a diagnosis. Whenever I explain this to any health professional, they are perplexed as well. This process seems backwards. I'm concerned the treatment options my doctor mentioned such as a breathing machine for sleep are no longer going to be available. I can’t discuss it with her because my next appointment isn’t until July, which feels like a lifetime from now.

I’m angry. I'm frustrated. When I read those words, I went into a tailspin. I told my husband “I’m done. I don’t want to do this anymore. No more tests. I’m done.” I wanted to cancel all of my appointments and tell my doctors I’m not going to be dragged through this process anymore.

I just want a chance at some quality of life. To be able to leave my couch successfully for longer than 30 minutes to an hour at a time. To drive (at least a little) again. To not have to struggle so hard to breathe and move, and maybe someday be able to sing again. To get some of my independence back. To be able to be supportive to my friends and family.

Every test seems to lead to more questions than answers and more tests. They are like gremlins. Sprinkle a little water on them and they multiply into destructive monsters that ransack your cupboards and terrorize your life. Every test seems to move this process one step forward and two steps back. It’s already taken more than twice as long to get this diagnosis than it did to get the POTS diagnosis. 

In the last year, I’ve been told by doctors and insurance companies I can walk “normally,” I’m “not technically disabled,” and my breathing appears to be “normal.” Yet, none of these words match my reality. These words have affected my material experience in terms of diagnosis, access to treatment, and access to insurance, but they do not reflect my lived, bodily experience. They do not reflect my inner truth. Although the question “am I wrong?” bubbles up from my subconscious daily, I know that I am not wrong. I know what the truth is. These words don’t matter in that respect.

So right now, I’m feeling done and tapped out. I don’t want to do any of this anymore. But I’ve been here before. 

Yet, I really believe the universe supplies you with what you need. I don’t have any appointments related to diagnosis or any tests for the entire month of April, which is a bit of a miracle. This gives me some time to recover and try to re-engage in this process--to step away and try to cope with all of the curve balls life has thrown at me. I owe you one universe.

In the health communities I’m in, I see people ask almost daily “How do you keep going? How do you not give up?” There is no answer honestly. There is no secret. You accept that there are times that you don’t want to do any of it anymore and then there are times it is second nature. I just try to navigate the stormy waters of anger, frustration, and disappointment. I wake up and put one foot in front of the other and the march of time seems to continue.

I try to focus on small victories and remind myself of things I have to look forward to: a new book about ancient Britain, playing video games with husband, playing music on sunny days, seeing my friends, hearing my nephews’ voices, the discovery of a documentary I haven’t seen, the prospect of recording again someday. Piece by piece these small glimpses of hope can help, and it can be enough to get by. Eventually I'll get my spark, my spunk, and my snark back.

I’m going to gather all these strands and threads of fate and try to imbue them with meaning and purpose, and then someday I’ll step away and these threads will tell a story that makes perfect sense.

I leave you with beautiful words of one of my favorite authors:

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