The Books of 2015

Once upon a time, in another time and space, I spent much of my life reading and writing. As a grad student and an academic, I would typically read 40-70 books a year and thousands of pages in articles and critical work. As a professor, I would read books that I would teach and books about teaching and endless, seemingly self-generating stacks of student writing.

This feels like a lifetime ago, but I have some accomplishments or “trophies” from that time that remind me that it was real. I have piles and piles of notes I took from all that reading (including what eventually would’ve been my dissertation), I have a copy of my Masters’ thesis on Hawaiian literature, an academic article I got published, and some articles that were in the production line to eventually be published. I was working toward publishing some work on media literacy and teaching during last year of working. Much of what remains from that time is unfinished work but I did finish some of it.

In linear time, all of this wasn’t that long ago. I only stopped working a little over a year ago and left grad school for good three years ago. Yet, when I think of this time, I look at all of my books I invested so much of my life to—books on ecofeminism, postcolonial theory, multiculturalism, transnationalism, Pacific studies, etc (what do these terms even mean anymore?). It’s like looking through the artifacts of a lost time, the vestigial remains of someone else’s life. It feels like lifetimes ago. Somehow that was my life. These tangible remnants are what make those memories real for me.

Since I stopped working, even since I left grad school, the amount of reading I do has dropped considerably. I still read every day, but the books I finish, the intellectual pursuits with a purpose, and the projects I complete, that is what has really vanished.

My ability to concentrate has diminished considerably since I became ill. Anyone with a chronic illness will understand what I mean when I say this. If you do not live with illness, the only way I can describe it is how you feel during a terrible cold or flu and how difficult it is to concentrate or be productive because the physical symptoms are so draining.

Now, I can only really focus on reading or writing for about 20-40 mins at a time, depending on how engaging it is. I start crashing very quickly and have to take breaks by sitting still or lying down. This is one of the problems with my desire to eventually teach online or do some kind of work that involves writing. Sometimes when I’m bedridden or having a really bad patch for weeks or months, I can do very little reading or writing. That’s also part of the reason I have trouble getting blog posts up regularly.

So what I’m getting at with all of this is the struggle to read and finish books or projects. Yet, I would say that my intellectual curiosity has not waned from what it was before I got ill. I usually watch a lot of documentaries and those are actually pretty satiating. I also made a concerted effort to try to actually finish some books in 2015 and I started making a list of the books I had finished.

This is the list of the books I finished. I read significantly more than this list but these are the books that I actually, legitimately finished:

Mists of Avalon – Marion Zimmer Bradley (re-read)

Black Like Me- John Howard Griffin

A History of Ancient Britain- Neil Oliver

Radical Acceptance- Tara Brach

Leaves of Grass (1855 version)- Walt Whitman

Siddhartha – Hermann Hesse (re-read)

Harry Potter and the Goblet of Fire- J.K. Rowling (re-read)

Harry Potter and the Order of the Phoenix- J.K. Rowling (re-read)

Harry Potter and the Half-Blood Prince- J.K. Rowling (re-read)

Harry Potter and the Deathly Hallows- J.K. Rowling (re-read)

Wild Seed- Octavia Butler (re-read)

Mind of My Mind-Octavia Butler

Clay’s Ark-Octavia Butler

Britain BC- Francis Pryor

The Mind in the Cave: Consciousness and the Origins of Art- David Lewis-Williams

The Sound of a Wild Snail Eating- Elizabeth Tova Bailey

My Imaginary Illness: A Journey Into Uncertainty and Prejudice in Medical Diagnosis- Chloe G.K. Atkins

How to Marry an English Lord: Tales of Wealth and Marriage, Sex and Snobbery –Gail MacColl and Carol McD. Wallace

A History of Scotland- Neil Oliver

The Journey to the East – Hermann Hesse

Although I often lament that I accomplish so little since becoming home-bound and so limited, making this list helped me feel like I had accomplished something. I’m going to make a list for 2016 too. 

I also like that this list tells a bit of story about 2015 too.

Hermann Hesse and Octavia Butler are two of my favorite authors and I’m trying to read everything they’ve written. I was reading Butler’s Patternmaster series in 2015, but I didn’t read the very last novel in the series. I was reading it when my mom was in the hospital and then she passed. This series is some of the bleakest writing of Butler’s so I abandoned it since I was going through such a difficult time. Maybe I’ll finish that last novel this year. If you like science fiction, or even if you don't, I can't recommend her books enough.

I read Black Like Me after the Rachel Dolezal thing happened. My focus for my degree was multicultural American literature yet somehow I had never read that book.

Mists of Avalon is one of my favorite books, but I hadn't re-read it in many years. 

I've been trying to read more health-related books. I started the Spoonie Reads section on this blog and will eventually get a review of Radical Acceptance, My Imaginary Illness, and The Sound of a Wild Snail up for that section. Someday!

Walt Whitman is my favorite poet but I had never read the first publication of Leaves of Grass. I read it in the dead of summer. Since I can’t go outside during the day in the summer, I sat outside in my yard and read in the evening, accompanied by the rebellious Walt Whitman. Although I always joked that in my studies I never read many white, male authors, I very much have a soft spot for a few early American writers and the Transcendentalists, especially Whitman. 

I’ve mentioned that I’m a bit obsessed with British and Scottish history and prehistory right now so a few of the books show that. I’ve become a bit of a disciple of Neil Oliver. I adore his documentaries for the BBC. They ignited my curiosity about prehistory. I want to read all of his books. Aside from his knowledge and passion that he demonstrates in his documentary work, he is really charismatic and has absurdly amazing hair.

Seriously!

Downton Abbey is my favorite show and I had read somewhere that How to Marry an English Lord inspired the creator to write the show, so I read it. The book was good fun and like an ethnographic study of the experience of American heiresses who married titled English men. I enjoyed it.

I’m obsessed with the Harry Potter series and would just re-read them on an endless loop but I try to get myself to focus on other things. The movies and the books are my happy place, especially since I got ill. They are my favorite escape. I always loved the series, but after I got ill I lost my mind a bit for everything Potter. They are like an emotional security blanket and whenever I’m feeling my worst, I go to one of the movies or books for comfort. Even though I try to focus on other things, I’ll probably end up reading at least part of the series again this year. Why fight it? I haven't read her detective fiction she has been publishing recently but maybe I'll try it this year. 

I look at this list and it is embarrassingly slim. You would think since I spend so much time still and resting that I would finish more, but alas concentration often eludes me. Some of these books were really long and took awhile to finish too. I usually read more than one book at a time and get distracted by other books but making this list helped me try to focus on one book at at time to actually finish them. 

Despite it being slim, this list still feels like an accomplishment. I was determined to only list the books I had actually finished. I’m hoping I can double this list in the coming year. 

I recommend keeping a list of books you finish this year. It's good motivation and it gives you a nice boost of confidence when you feel like you haven't accomplished much intellectually.

What are you reading right now? Anything you want to read this year? 

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. 

Ups and Downs

The Downs 

Bedridden days, needing to go to the ER to beg for an IV, having to call a sub to cover my finals, not getting to say goodbye to my students, unable to drive, missing more work and events, unable to leave the house, comically starting a small fire in my kitchen because I’m too ill to cook. The many adventures of being kind of broken. The plot twist had a predictable ending. I expected to end my first year teaching full time in celebration. With a bang, not a whimper. I should be plowing through my last bit of grading so I can get the party (summer vacation) started, ready to fully participate in the first time I have ever had summer off since I’ve started teaching. I was supposed to be strong and ready. Things have gone downhill again. Something has shifted. A slight turn. The jump to the next lily pad. The last six months may have been the worst since this thing started. I long for some normalcy. Some simplicity. To do the things I took for granted not so long ago. 

The Ups

It may have been unspeakably brutal, but I did make it to the end of the semester. I had a student nominate me to be honored at an event and I had students tell me honestly how much they enjoyed working with me. I saw improvement in their work and I helped to get them there. I feel triumphant. I was a sick, lump of a person often, but I still managed to make a difference. I know that most people would have left a long time ago but I pushed through.

I got a walker—despite putting off that moment for many months. But I feel triumphant to finally have the courage to let go of my pride and do what I have to do to get around. It has a seat! I’m going to get a cup holder for it too.

Mel and I rocking some slow jams

I played music. I sang some of my own music in front of people two weeks ago, playing a short set. I have been waiting for that moment for two years. Singing and performing has become extremely difficult because it is so taxing on my system. It’s really difficult to sing when breathing is such a struggle, especially the way I like to sing, with every pore in my body. I was bedridden the day before we played. But I did it. I feel triumphant. I hope to do it again soon because I have new songs I’ve written that I’ve never played. I want to reclaim my life as a performing songwriter. 

2014 thus far has been little else but ups and downs. Triumphs tempered by setbacks. But this is the reality of chronic illness and a rare illness at that.

I don’t consider myself unlucky or trap myself into thinking about fairness. I try not to think in such relative terms. I feel blessed that I now have two months to try to regain my strength, reclaim some of my lost identity and passions, talk to my doctors, spend time with my wonderful patient husband, and figure out the way forward. Ready for some good days, some joy, and some air conditioning.