Vacation!

I’m doing something crazy next week, something I haven’t done in years. We’re going on a vacation! I mentioned this before, but I haven’t left my town for something that isn’t medically-related in two years. 

Seriously. Two years.

I haven’t even gone to the next town over to see my BFF’s new place. She moved there almost two years ago. I haven’t made it to the Bay Area to visit my sister, about a two hour trip. She’s lived there for three years. I haven’t been to our favorite place, Sonora, an hour drive away, in two years, and the last time I went to Yosemite was three years ago. I haven’t even made it to any of my appointments at Stanford this year. I've had to cancel every single one. Travelling has become absurdly challenging, especially this year, so all of that has just not happened.

The last time we left town for something fun was when we went to Tahoe for a week with some friends two years ago. We had a great time. I wasn’t doing great but I was doing much better than I am now. I was still working at that time.  I had just survived the last semester I was able to teach and I was rapidly losing my mobility and independence at that time, but I wasn't completely couch-bound then. We played games most of the day and went out to eat most evenings. I sat on the porch that overlooked the forest and read much of the time. We went to the lake one evening as the sun was setting but I wasn’t able to last long so we didn’t get to watch the sun set.

The view from the porch. Ah to live with this view every day. What a dream

I ended up at the ER on the last day we were there. That’s a story I still haven’t shared on the blog yet and I still might someday. If I could create a dream ER experience, it would have been that. I was treated quickly and the ER doctor, who was probably younger than me, had heard of POTS. That ER was incredibly busy. I got an IV and some Zofran and as I waited for the IV to finish we heard someone have a heart attack, someone who drowned in the lake, and the man in the bed next to me was withdrawing from something. The ER doctor forced me to drink Gatorade which I HATE because I declined a second bag of fluids. I just wanted to go home. After one bag, I felt ok enough to make the drive. Anytime I need to go the ER, I dream about go that hospital in Tahoe.

Mustering a smile as the IV worked its magic

We didn’t know at that time that I also had Myasthenia Gravis. I was having difficulty breathing and the lack of oxygen at high altitude did not help. I hadn’t even told my doctors at that point that I was having trouble breathing. The mountain thunderstorms that were passing through made me severely nauseous. It was a bit calamitous but aside from having to go the ER, I look back on the trip with fondness. I had a great time. I’m glad we were able to go somewhere while I was still able to travel. 

I just wish we would’ve stayed at sea level.

So this year we decided to go to Monterey with the same friends and stay in a house for a week. As I’ve been going through the worst health crisis I’ve ever had the last few months, I keep thinking “I have to make it to Monterey. I will make it no matter what.” I haven’t really been focused on much else at this point besides trying to get well enough to make it.  

We planned this trip awhile ago and I always imagined that I’d wake up each morning while we were there and do my usual routine of yoga, stretching, meditation. I never imagined I’d be using my wheelchair full time instead. In a few days, it will be two months since I’ve been unable to walk or stand. It’s not how I imagined this trip but it doesn’t mean I’ll enjoy it any less. We were planning on playing a lot of games too but more than likely I won’t be able to participate much, but that’s ok.

As a lifelong Californian, I've been to Monterey many times over the years so I definitely won't feel like I'm missing out since I'll have to spend most of my time on the couch while we're there. We were planning on going to the Aquarium, and that’s the main reason why we chose Monterey since the only way I could manage a trip to the Aquarium is if we stay multiple nights. I’m not sure I’ll feel well enough for that but it’s not off the table. Not sure I’ll be able to make it to the beach either but I’m definitely going to try. I'm mainly just looking forward to being somewhere that isn't obscenely hot and getting a change of scenery, from my couch to another couch.

I’m going to try to take some time off from being engaged in the world. It’s election season here in the US and I’ve been completely absorbed in that, global politics, and the violence that’s happening here. I may spend all of my time at home, but I’m still an engaged citizen of the world. But I definitely need some time away from that and running through the list of the all the appointments and health management I need to do in my head every day. There’s always something I have to prepare for, plan, make calls about. I’m going to take a much-needed break from it all.

When I get back, I get about a week to rest and then I have to do the worst test ever again (the Single Fiber EMG) at Stanford. But I don’t want to talk or think about that right now.

I’ve been trying to figure out what a suitable number of books bring is. If we’re there for five days, is four too many? What if I run out! What if I have nothing to read! The horror. I’m just going to take it all. Two works of fiction, one of philosophy, one of poetry, and my tablet in case I need anything else. Seems reasonable to me.

It was over 100 degrees essentially every day for a few weeks here. I was telling husband that I don’t even know how to pack for this trip because I don’t remember what 65 degrees even feels like. I’m going to enjoy being able to wear my higher quality compression stockings with jeans and being able to go outside. It won’t get cooler here until November so it’ll be a nice reprieve from the brutal heat.

I went out into public for the first time in months last week and it ended up being a bit disastrous since it was 104 that day. We went to my favorite antique store. I'm hoping that the cooler weather will make leaving the couch a little more feasible but we'll see. 

Husband and I at the antique store. No amount of air conditioning could save me at that point but it was nice to get out

I've been carefully planning for this trip for weeks now. Traveling while ill presents enormous challenges and it's difficult to make contingency plans for every form of chaos that can ensue. I've made a list of everything I'll need to take, including my meds, my breathing machine, shower chair, inhalers, my provisions and electrolytes, etc. Anytime I think of something, I write it down since my memory is unreliable. I'm working on packing a little every day so it doesn't completely exhaust me too much. 

I'm just going to cross my fingers and hope for the best.

I’ll probably be quiet on the Facebook page but follow me on Instagram or Twitter where I might be posting some pictures.

I’m hoping to get a ctrl-alt-delete on life, a nice reboot, and come back feeling a little more refreshed and renewed. I'll be listening to this song over and over, enjoying a little reasonable sunshine. 

Dear Body: Please Forgive My Transgressions

It happened again. Just as I was starting to recover—ready to grasp a bright spot—I make more mistakes and go back to where I started.

Stuck in this cycle of slight improvement, push just a little too hard, then end up back at the beginning. Trying to reclaim that moment of improvement. Over and over.

I push you body to exercise when you can’t. I make you walk when paralysis has overtaken your limbs. I have treated you as the enemy for years when we were always a team. Always.

Sometimes I just get so tired, so frustrated, so angry at the ever-increasing limitations. So tired of being shackled under the weight of illness. Then I over-step, ask for too much, push too hard.

I ask for forgiveness.

I tried to have fun with my nephew a few days ago. I tried to play for just a few minutes. 

But you can’t do that anymore. That's no longer within the parameters of your abilities.

I was bedridden for hours and couldn’t walk the next day. I have struggled to leave my bed and couch since. I don’t want my nephews, my family, my friends to remember me as a lump on the couch—someone who asks others what they’re doing, who listens to other people’s dreams and aspirations, who rarely leaves the circumference of a room. I don’t want this.

So I push myself too hard every day. I ask too much every day.

When I rail against my fate and make questionable decisions in protest of illness, you remind me that my limitations are serious. The consequences are real. My breath leaves, my limbs no longer move, any hope of verticality is dashed. Crash so hard and so deep that swimming to surface is impossible.

Only rest. 

I rest in penance.

I ask that we try again. One more time. I’ll listen to what you tell me. I’ll ask no more than you can give. I’ll treat my limitations as sacred.

Because when we’re a team, we can do great things.

You give me energy to play music—to get lost in a melody for a short time, to improvise and roam in the geometry of sound. It is in those moments that I am truly free.

You give me enough energy to go outside sometimes and walk a few feet or look at the flowers growing in my yard. In those moments, I feel like I’m a member of the world again.

So we start over, start the cycle again, and maybe this time I learn from my past mistakes and press forward enlightened and wiser.

Ready to try again. 

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? 

The Bright Spots of 2015

I’m starting to think about the tumultuous ride of 2015 and, more importantly, thinking about what I want 2016 to be.

I will not look back on 2015 with much fondness. There were a few bright spots, but this was a very dark year filled with tremendous lows. I was talking to husband about writing this post and asked him, “Since there were so many lows, what were the high points of this year?” We had a hard time but we came up with a few highlights. 

I will remember 2015 as a year of loss: I had to officially resign and give up my career, my independence continues to be chipped away at, and I lost my mother. But this post is not about the low points. You can look through many of my posts this year and see those low points. I don’t want to live a life dwelling on the hardships and setbacks. I want to try to live a life. I want to inject my life with some hope and joy, because even when I was hitting a nadir this year, there was still hope and joy around me. I want to end this year remembering the good parts.

As I was trying to remember the good moments this year, I started looking through pictures I had on my phone or pictures my friends had taken, and doing this filled me with so much joy. It is so easy to get lost in the tides of grief and sadness when they overwhelm you; it's easy to forget to see the world around you. Looking through these pictures and remembering the good times helped me see the life I still have all around me and that, even with my limitations, I am still a participant in that life.

These are some of my favorite memories from 2015, some with pictures attached:

-This picture is one my bestie took at our annual New Year's Eve gathering last year, 2014. I was not well in this picture and my mother was not well either, but we're both laughing about something. I can still picture my mom doing this, pretending to take a picture. This may be the last picture of the two of us together because I don't have any I took this year. It's good to remember that we did have times when we still laughed together.

-Any day my nephews come over is a great day. One day early this year we were watching them and we went to a park near our house. When we told them that's what we were doing, they were brimming with excitement. I sat on a bench and husband pushed them in the swings and chased them around. I couldn't participate but I had a great time watching them.

-Mother's Day stands out to me. We already had to put my mom in a care facility a few months before Mother's Day and I hadn't seen her much before then. My mom and I used to talk on the phone every day, but I rarely saw her when she moved into St. Francis, mainly because I was struggling with my own health at the time and couldn't drive myself to see her. But on Mother's Day, my step-dad brought her to their house. She seemed at peace that day. She seemed happy and content. It was the first time we were together as a family after she had moved and it was a good day. My mom and my sister spoke on the phone that day. It is probably my happiest memory of my mother this year and I'm cherishing it. 

-Even though my mobility is limited, I try to get outside and walk every day with my trekking poles, which my physical therapist suggested I start using. It's a form of exercise but mainly it's for my mental health. I am trapped inside on my couch much of the time, but when I can get outside I feel like I'm part of the world again. I only walk a few feet or yards, depending on the functionality of my legs each day. I used to hike mountains, but this short walk, which most people can do with ease, is now my mountain and when I can walk it I feel on top of the world. I often take pictures when I'm out on the walk if it's a good day.

- I've mentioned this before, but since I stopped working and have had time to indulge my interests I never knew I had, I have become a bit obsessed with prehistory, particularly prehistoric Britain. I could read endless books about Stonehenge and archaeological finds in Britain and never get bored. I've watched every documentary I can get my hands on. I never had the time to realize this obsession when I was an academic, but now I do. Since I can't get to Stonehenge to celebrate the summer solstice, we had our own solstice party this year and celebrated with pizza, Led Zeppelin, and games, just as our Pagan ancestors would want us to I'm sure. One of my good friends is a bad ass baker and made this brilliant Stonehenge cake. I'm still in amazement every time I look at it.

- One of my goals this year was to get some articles about illness and disability written and get them published for a wider audience. I submitted some work to The Mighty and have a few articles up and I'll be sending them more soon. I'm hoping to send more writing out to more publications next year. You can see the ones they published on my author page.

- My husband and I used to like to travel, hike, go to restaurants, leave the house, but we only leave our town together now for appointments. But we try to make it quality time out of it in some ways. We usually try to laugh and have a good time, even when I'm being tortured during some medical test. This first picture is from our favorite hotel we try to stay in whenever we go to Stanford. The hotel is a bit of a splurge but it always feels like a bit of a vacation when we stay there. Close enough to a vacation at least.

- It's been my dream to own a piano forever and the consignment shop right down the street had the most gorgeous, vintage piano. This piano was my soulmate but the price tag was steep. It would also take up our entire living room. I got to play it a few times before they sold it. Maybe someday we will cross paths again and I can own it.

- My nephew #3, Max, was born in July and he is such a sweetie. We all call him Baby Max but my nephews started calling him "BayMax" from the movie Big Hero 6, so husband and I bought him a BayMax plush when he was born. My husband looks exactly like his father and now Max looks just like the both of them. He is the only one of the three to take more after my husband's side.

- Husband and I made a Stonehenge garden this summer. You may have heard about the drought here in California so it eventually became DroughtHenge. I'm hoping we can re-plant it next year. 

- I did some artwork this year, not much but more than last year for sure. I'm hoping to do more next year. Here's a daffodil I was working on and more Stonehenge (of course)

- My mom took a bad turn in late summer so I called my sister and asked her to come here to visit her. My sister had not seen her for about six months before that. My step father picked up my mom from the care facility and brought her to their house so we could be together and BBQ. This was the last time we were together as a family before my mom went to the hospital just a few weeks later. This was the last time I hugged my mom. I'm thankful that I listened to my instinct and asked my sister to come. I didn't know that day that it was the end but I'm thankful for that memory.

- For my birthday this year, I asked everyone to wear blue to help me raise awareness for Dysautonomia since October is Dysautonomia Awareness Month. Many of my friends and family participated and posted pictures wearing blue on the Facebook page I made for the event. This is my sister and her friend Scottee, my mother-in-law, and my crazy nephews. 

- I have so many pictures of my cats Bella and Mopar in my phone. They are our little family.

- After slowly working up to it for a year, I finally made it to a normal dose of Mestinon a few months ago. The best part is the cost of the medication went from $80 to $3 a month when I was finally able to switch to the pill form. It really took me a year to get there. It felt like such an accomplishment.

- Instead of a funeral, we had a Celebration of Life gathering for my mom. It was such a good day. Most of our friends and family were there and many people I hadn't seen in many years. Unfortunately, I only have one picture from that day. Almost my whole gymnastics team from 20 years ago reunited and got a picture together.

- Thanksgiving and Christmas were rough this year without my mom but we still did our best to celebrate with our families. Here's a picture of my husband and our cats, the ornament that hospice made for my mom to mark her passing this year, and a picture of me and my best friends at our annual Christmas party for our friends.

- We made a memorial fund for my mom and we gave the check to the care facility where she lived much of this year. They took great care of her and we wanted to say thank you. We ended up donating $1500, and they were elated. I've been trying to play their piano for the residents regularly as a way to give back to them too. Here's a picture of my step-father and I dropping off the check and also my best friend and me playing some Christmas music for them on Giving Tuesday.

- And just to round it out, here's a few pictures from our annual NYE party this year. My sister, who almost never comes to the party we have every year at my parents' house, surprised us by showing up a few hours after the party started. It was such a great surprise. The last picture is my husband hilariously photobombing me and my friends.

So farewell 2015! You definitely had your moments. A lot of Stonehenge, a lot of cats, some sorrow, and so much that was bittersweet.

I'm wishing for a happier and healthier 2016 for all of us. We all deserve it. 

Month of Gratitude, Week 3: Little Things

I’ve been trying to come up with a focal point for this week’s post about gratitude, but the only I can really think of is being thankful for being alive and appreciating the little things right now.

My heart is very heavy after the attacks in Paris, my body is exhausted from a string of appointments, and I’m still in throes of grief. One of my best friends just lost her mother this week as well, and I’ve known her family for 20 years. I’m just trying to take a step back and feel some gratitude that despite the physical and emotional wounds we have all acquired, we survived them, and in that survival there is solidarity—a collective spirit that life must press on.

I was so weepy this week that I’ve reached new levels of absurdity. I was watching that video of Fred Astaire and Ginger Rogers dancing to “Uptown Funk” that’s been circulating everywhere and I started crying a few seconds in. I dare anyone to watch it and find a reason to cry. I at least had a good laugh about the absurdity of it. 

Even though my body wasn’t able to exercise much this week, I still went for my daily walk almost every day. It’s been a bit warm this week but I’m loving the hazy autumn days. I'm always grateful each day when I am able to get outside just for a few minutes. On bedridden days, I dream of taking my short walk.

One of the trees next to my house has gone full autumn

It’s supposed to get colder next week and dip under freezing temperatures. That doesn’t happen much in these parts because we live in varying stages of living at the center of the sun most of the time, so I’m very much looking forward to that cold. I love the cold. I prefer the cold.

Thanksgiving is next week and it’s going to be a really rough one. I’d say Thanksgiving and Halloween are my favorite holidays and my mom and I always watched the Thanksgiving Day Parade and the dog show that follows together. I’m not sure I’ll watch it this year, but if I do the sight of the inflatable Snoopy or Minions floating down the parade route will leave me in tears. I'll be laughing at the same time.

The rest of the year is going to be packed with gatherings, including my husband’s birthday. He is having a birthday party for the first time in years and I’m very much looking forward to it. His birthday is at the beginning of December and when I was teaching or in grad school that was always the busiest time of year for me so his birthday celebrations have been unfortunately minimal in the past. I hope we can make up for it this year. Our four year old nephew’s birthday is the day before my husband’s so I kept telling him he should have a dinosaur –themed co-birthday party. Maybe next year.

Then we’ll have our annual NYE gathering at my parent’s house and since my step-father is moving out of state, this will be the last one there. I’m terribly sad about all of it but I’m trying to remind myself to enjoy these moments since everything has changed and will continue to change.

That’s the strange thing about life. You think that everything will just somehow continue as it has been. That the march of time will somehow leave the details of life, the simple things we take for granted, untouched. But that’s not how it works.

I’ve been re-learning Christmas music to play at the assisted care facility where my mom was, and it’s been probably a decade since I’ve learned more than just a few songs this time of year. It’s given me a reason to practice with purpose and I’ve been playing every day.  I’m very much looking forward to playing music for them and sharing some joy. They are a great audience and deserve some joy.

I even sang an entire verse of a song this week, which is an improvement over what I have been able to do. I hope that’s a sign I can someday make it through an entire song.

This is what I save my spoons for

I hope you also had some little things that made you feel gratitude this week. We could all use some joy in whatever form we can find.