The Week That Was, January 29th

The good patch I had earlier this month has definitely ended and the last two weeks have been pretty rough. I’m having trouble sleeping, eating, and breathing (along with the usual standing and walking). I keep thinking “how did it get so hard to just be a human being?” It’s pretty absurd. Aside from these obvious things, my spirit is strong right now, stronger than it has been in a long time. I hope that lasts awhile.

-I finally saw my GI doctor last week for the first time in a year and a half. Last time I saw him, I explained that after all the trial and error we went through to manage my Dumping Syndrome, all the prescriptions we tried that failed, my GI issues were starting to stabilize since I had stopped working and started using imodium every morning. The GI issues are still my most difficult Dysautonomia symptom to manage but not working has made a huge difference in managing it. When I told him this, he basically broke up with me: “just call me when you need me.” I had finally got back to my normal weight then. It was such a struggle to keep weight on while I was working.

I kept that weight on for a good year. Sadly, since I’ve had an intestinal infection the last few months I’m back to the weight I was when I was working, which feels like failure. I’ve lost about 10 lbs. When I first got ill in 2010, I had an infection then also but I lost 20 lbs that time. Luckily, this has not been as bad. He gave me some awful liquid medication that’s cherry mint flavored (the horror!) and if that doesn’t work, I switch to an antibiotic. Hopefully the liquid medication will finally take care of it.

My medicine and husband's "medicine"

We should start a petition to stop pharmaceutical companies from adding awful flavors to medications. I can still taste the bubblegum amoxicillin my sister and I were always on when we were young. I'm sure that flavor stands out to so many people from their childhood. Awful.

-I finally got a hair cut! It’s been about 6 months. I had to cancel my appointment multiple times but I finally made it yesterday. It’s amazing how such simple tasks so many take for granted can be mountains to climb when you are ill. It’s been two years since I’ve dyed my hair and that’s my next goal. The prospect of sitting up in a chair for 1-2 hours is a bit daunting. Before I got ill, I got my hair done every few months. I have been dyeing it since junior high so I had no idea what my natural color even looked like. But when I started losing handfuls of hair and illness took over my life, it became a non-priority. I want to make it a priority again because even though I don’t get out much, it helps me feel better about myself.

Bella got a cameo appearance

Even though our energy is so limited, I think it’s important not to lose the rituals of self-care during illness. I know that when I look better on the outside than I feel on the inside that always gives me a boost of self-esteem, a jolt of determination to power through the physical symptoms.

-We have been watching my oldest nephew most Fridays now and his younger brother has been so disappointed that he hasn’t been able to come. He called my husband last week and said “Uncle Dave, can I please come play Mario and eat gummi bears with you?” So my sister-in-law dropped him off on Monday and we granted his wish. After we played video games, he requested to watch a movie and he asked to watch Harry Potter. I was so proud I could’ve shed a tear. So we watched the first movie and I taught him some Potter spells to recite with the wand my husband made me. It was a great day.

-Even though I haven’t performed in almost two years and I’ve had to stop singing because of Myasthenia, I’m still committed to improving as a musician. Music will always be my greatest joy. It also helps me escape the physical symptoms and just wade in a vast ocean of melody for a short while—until my energy runs out. One of my goals still is to learn or memorize at least one song a week. Nat Cole has been one of my favorite musicians for most of my life and sadly most people have no idea what an accomplished jazz pianist and organist he was. Many only listen to him at Christmas time. I really recommend any of his recordings he did with his trio. I’ve avoided learning one of his most popular songs, "Stardust," for years because it's so challenging, but I’ve been trying to tackle it. My sister loves this song so I’m hoping to play it for her sometime.

-Speaking of jazz, here’s something hilarious. Jazz is my favorite genre of music. It’s my heart and soul, but some of the stereotypes about the genre are admittedly deserved.  Comedian Jon Benjamin decided to make an experimental jazz album so he got a group of accomplished jazz musicians and joined them on piano. Except, he doesn’t know how to play piano. Hilarity ensues. What’s funny, is some of the music could actually pass. Miles Davis said there are no wrong notes in jazz, so I guess you have to give it to him. This really is jazz. I played it for husband (who does not share my love of jazz) and he laughed. Listen to that gorgeous song by Nat Cole above, and then take a listen to this and have a good laugh:

-This is my 6^th post this month! That’s the most I’ve ever gotten up in a month so I’m feeling pretty good about myself. I’ve got more posts in the works and I’m hoping to get more interviews and guest posts up too. Stay tuned!

Some links from the week:  

Something long overdue: Lego created a disabled minfig

A new book that looks at the empirical research of “mind over matter.” I’ve added it to my must-read list for this year

A great article by a fellow Spoonie about overcoming the mind/body divide in Western medicine

My BFF Carrie Anne outlines some of her goals for the new year

A woman describes something so many of us know too well: her dangerous symptoms were dismissed by a doctor as “just anxiety.” A few days later, she had a heart attack.  Another example of the very real consequences of the gender bias in medicine

A Day in the Life

Instead of an update post this week, I have something a little different. My best friend Carrie Anne suggested I write a post like this and I thought it was a great idea. I outlined a typical day for me to show what managing illness looks like and what it means to enjoy life while battling life-limiting illness. This is what a pretty good day looks like, without any major catastrophes. I included a little of my thought process also. This is the Spoon Theory of illness in practice :

“It’s 9:00. I meant to wake up at 8:30. I set my alarm for 8:30. What happened? I didn't even hear my alarm. I always feel better physically if I can get up before 9:00. Oh well. I feel like I didn’t sleep. How many times did I wake up last night? Just the once or twice? I woke up when I heard husband leave at 3:30. Did I wake up because I wasn’t breathing? No. Not this time. Intestinal pain? Probably. I can’t nap so this will be as good as it gets today”

I get up and make the same breakfast I have every day: instant oatmeal with a scoop of peanut butter and extra salt. I had to give up any hope of eating real food in the morning a few years ago because my GI problems are the worst in the morning and I will instantly be lying on the bathroom floor if I try to eat real food. I’ve had a few disasters from trying to eat solid food and I'll just leave it there. I get most of the oatmeal down usually and my morning meds, which are my tachycardia med, Mestinon for Myasthenia (I can suddenly breathe again!), Florinef (oh how I hate thee but I cannot function without thee), imodium (food and I can be on speaking terms again), and a salt pill. 

I start hydrating as soon as I wake up and drink fluids (tea, water, V8, Nuun) non-stop until bedtime. That's what it takes with Dysautonomia. I do some of my vestibular exercises in the morning (standing still for 30 seconds and trying not to fall from the swaying). This is supposed to help counteract my balance issues, even though they aren't vestibular related. It usually helps slightly.

“I’ve been sitting here watching mindless television for an hour. I got my food and meds down. Do I attempt exercise? I could get on the stationary bike, or try to walk, or do some strength, or just meditate instead and try to exercise this evening? It’s a risk either way. I could waste all my energy on exercise and risk not being able to make myself lunch or be able to do anything else. I’m going to risk it. Exercise seems to be going better in the morning. I might not have any energy left this evening. I better do it now.”

I do one of those options but never push it too hard so that I have enough energy still left. The “exercise” I do is only 10 minutes or less and very minimal. As a former athlete and someone who has always been very active, it feels pathetic but I know it is still a huge success if I can do it and if the weakness/paralysis isn’t bad enough that I can get some use from my legs. With Myasthenia, the more you use a muscle, the more weak it gets and if I'm having a rough patch, the paralysis could set in for days or weeks. I have to be very careful with how much exercise or movement I do because my legs especially will completely shut down if I ask too much from them. Sometimes I end up spending all of my energy on exercising and sometimes I finish exercising feeling slightly invigorated with more energy. It’s a crapshoot every time. 

I put my compression stockings on (if I exercise, this happens first), get dressed, do my makeup, brush my hair (maybe curl it), and listen to NPR news. I may be home-bound now but that hasn’t changed my perpetual desire for news and politics. I need to know what’s happening in the world even if I’m barely part of it. I’m still a citizen of the world.

I usually waste copious energy on getting ready. This is a controversial subject in the spoonie community. I get dressed and do my makeup every day, even when I’m not leaving the house, and I willingly waste much energy on this. It is my war paint, it is my normalcy, and it is how I know the difference between ok days and horrific days. Horrific days are ones where I cannot get dressed or put make up on or leave my bed. It’s a dash of vanity too. I don’t want anyone to be able to look at me and see the struggle etched on my face.

My mother taught me so much about self-presentation and feeling good about yourself through that presentation. Even when we were destitute and she was a single mother, she always looked fantastic and had high esteem about her appearance. It’s something I still value even if I don’t leave the house most days. I like to know that if a miracle happens and I have enough energy to leave the house or if someone comes by, I will at least be ready.

I won’t feel the part but I’ll at least look it.

“It’s 11:30. I have a little time before the Big Crash comes. It’s just all downhill until I can take my afternoon dose of Mestinon at 4. So many hours from now. This is the worst time of day for me so it’s time to sit. Sit and rest. My to-do list still has so much left on it for the week. I have phone calls to make, appointments to set up, paperwork to fax, I have to talk to the disability insurance company again. I can’t believe I have to call them again this week. It never ends. There’s never a week where I don’t have to do something related to managing my own care. What if I took a week off? Maybe in June? A whole week where I don’t do any of this? Maybe.”

"Sit still. I have to make lunch somehow in an hour and I need to rest for that. I’ll make the phone call after lunch. After I use my afternoon dose of my inhaler. That way I won’t be gasping for breath once I get off the phone. The only way I can sit still is if I force myself to read or watch something. I’ll watch another episode of Time Team. I never get tired of Time Team. One episode is enough time to be still and rest before I have to make lunch. Do I have enough energy to make myself something besides the usual eggs I eat for lunch every day? It’s a nice thought. The pain in my intestines tells me that I shouldn’t risk trying to eat other food anyway.”

I watch an episode of Time Team, one I’ve probably already seen and have the dialogue memorized, or a documentary or live music on YouTube. Then I try to get enough energy to make myself lunch and maybe unload the dishwasher in stages. I take an hour to eat lunch, which is the amount of time I need for each meal. Because of the Dumping Syndrome related to Dysautonomia, I have to eat very slowly. That way I can get enough calories and the food has a good chance of actually staying in my body long enough to digest it. 

All cooking is done while sitting, of course!

“It’s 1:00. I guess I’ll make that phone call. Then I’ll sit outside in the yard for a bit. That sounds lovely. That will be my reward for getting this off my to-do list. The birds in my yard always hang out with me when I’m out there. They make me feel like Snow White, if Snow White was a crippled, recovering academic with a Zeppelin habit. I’ll read or work on some writing while I’m out there. Or just listen to music. Or read the news. Either way, it will help me sit still and rest. I’ll check Twitter and see what my friends and spoonie friends are up to, or what political nonsense is happening. Look at the sky. Feel good about life and my place in the universe at this moment.”

Husband gets home in the afternoon and we talk about how his day went. He lets me vent my frustration about American politics or whatever news I read. We laugh at some random thing we saw online or heard and banter about our nerd interests. Then he usually plays video games and I read or work on some writing for awhile.

As my morning Mestinon dose starts to wear off, the afternoon is a slow climb. It’s the worst time of day for me so I try to spend most of it resting. My inclination is to keep moving, try to clean, do things, so I really have to force myself to rest during the day. If I push myself, then I can end up bedridden and struggling to breathe and move. Then the day is completely over. It's a constant balance to try to stay mobile and active enough while resting significantly. By 4 PM I can take my afternoon dose and then things start to turn around a bit. I can breathe better, have more energy, and more use of my limbs. I can maybe try to go for a walk or do a bit of cleaning or play my keyboard for 15 minutes. Usually I keep resting. If I don’t eat dinner by 6 PM, I start crashing again.

Husband makes dinner most days. Cooking complicated meals is just not something I’m able to do anymore, so he does the cooking. But it’s a fair trade because I do all the clean up. I don’t mind doing that part. It feels like my contribution. I take my vitamins with my dinner since I have the best success with food at that time.

The evening is the best part of the day because that's our quality time. We usually eat our dinner and watch whatever Sci Fi show we’re currently watching. I also watch the news at 5:30 every day. We sit on the couch and watch our show with our cats and then husband goes to bed around 8:30. I go to bed later than him so sometimes I’ll go in and lie down with him for awhile. We’ll grab one of the cats and have a team snuggle for 15 minutes and then husband falls asleep.

I usually shower, a very quick, lukewarm shower with my shower chair as one with Dysautonomia must take. A hot shower is one of the worst things you can do with Dysautonomia because it dilates the blood vessels and your body is already having a difficult time keeping blood flowing to your heart and brain from blood pooling. Gravity combined with heat is Dysautonomia kryponite. That’s how one ends up unconscious on the shower floor, which is not sexy. Even with the fast, lukewarm shower while sitting on my shower chair, I can feel my brain start to turn off by the end of the shower so I rush through it. After I shower, I sit for a bit and rest. I can’t shower in the morning anymore unfortunately. If I do, it could take me all day to recover from it. Evening is usually a success.

Around 8 PM, I usually get my second wind or at least a small surge of energy. I usually finish the dishes if I haven’t already or try to do some of my very easy physical therapy exercises. In the summer, I sit outside and read since I can’t go outside during the day. I loathe summer now but eating my breakfast outside in the morning and then sitting outside in the evening and reading are both real treats. I look forward to that bit at least.

“It’s 9 PM so I have an hour or so before I take the next round of meds and start preparing for bed. Should I try to exercise more? No. I did enough today. I have to save some energy for tomorrow. Do I watch some crappy tv? Or read? Maybe I could try to mop? I’d give anything to mop. I need to invent a vacuum cleaner/mop that I could ride because I just cannot successfully do that now. I miss the days when I could clean our whole house in an hour. Now so little gets done. Thank god no one ever sees our room and bathroom. I need to learn to live with it. It’s not the end of the world. I did enough today. It was good enough.”

“Maybe I could try to drive tomorrow? It’s been almost a year. Maybe I could walk all the way across the street? It’s been so long. Maybe I could go somewhere with husband? I don’t want to get my hopes up. I’ll just take whatever my body throws at me and accept it. I had an ok day today so I just need to be satisfied with it."

"I didn't have to spend any time in bed, and that my dear is glorious.”

“But I need to sit and rest before bed. I should do my evening dose of my steroid inhaler now. I may need a hit of my rescue inhaler before bed since I’m not breathing great. Hopefully they’ll both be enough to breathe ok through the night. I don’t want to have to use them back to back right before bed. That will lead to endless coughing and could keep me up. I’ll use it now.”

Then I take my evening meds and try to get to bed before 11. I usually feel my best if I can get to bed by 10:30 and wake up around 8, but I’ve always been a night owl. I wish I could stay up later, but those are days are over. I lie in bed and read for awhile, my cat climbs up next to me, and then I eventually fall asleep to start the day all over again.

***

What I hope to show with this is a little of what it’s like to manage chronic illness day to day and a little of what it’s like for those who are so ill that they are home-bound. This is actually what an ideal day looks like, without having to spend any time in bed and accomplishing a few things. Perhaps I'll outline a really bad day sometime, but it won't be an easy read that's for sure. I hope I showed not just the constant battle of managing illness, but more importantly, what it means to live a good life despite it—what it is to attempt to thrive despite a body strained by affliction and in constant chaos. 

This wasn’t my normal a few years ago because I was working still. I left the house every day. I lived among the rest who have a career and a sense of purpose. But this is my normal now and I have adjusted to it. My sense of purpose has changed significantly and often that purpose is just to try to make the most of each moment, in the hopes that I’ll feel well enough to enjoy it fully. 

I never know what I will wake up to each day or how I will feel moment to moment. The day can vary so widely that it is often impossible to predict what I’ll be able to do. But no matter what the day becomes, I have learned how to feel satisfied with whatever I get and whatever I'm able to do. It's not an ideal life, but it is still a good life. A good life indeed.

The Week that Was, January 15th

What a week of ups and downs! I wrote last week that I was finally having an ok week after months of hanging on by a thread and struggling to move, eat, and function. This week hasn’t been as good as last week but good enough for sure. 

-I mentioned last week that we were going to drive to Stanford for my brain MRI this week. It didn’t happen. I rescheduled it for a variety of reason, but mainly because I didn’t want to jeopardize finally feeling a little better physically. Our last trip there in November wiped me out for weeks. Then the festivities of December wiped me out so I just could never catch up. I haven't met my exercise goals in months. Yet, I feel like I’m making a bit of a turn around finally and I wanted to capitalize on that and get back to exercising. It was probably the wrong choice to not show up, but I really needed some time. Also, I have a few local appointments next week I must show up to and a trip to Stanford could risk not being able to show up. My husband and I were so relieved not to have to make the trek there this week and stay the night. I was able to get out and walk instead!

- I see my GI doctor next week for the first time in a year and a half. I need to talk to him about the intestinal infection, constant pain and nausea, struggling to eat, and not being able to put weight back on. But really I’m going to tell him, “eating food is important and everything but what do I need to do to be able to eat Girl Scout cookies when they come in a few weeks?” That is priority #1. 

-My next article, "Why the Fight for a Diagnosis Matters," at The Mighty is up and you can read it here. I wrote about the battle of living on the Hamster Wheel of Diagnosis and why the fight to finally get a diagnosis matters despite the exhaustion and invalidation that can come with it. Most people do not know that the typical time to diagnosis can be six or more years. Most people don’t know that being told “it’s all in your head” by countless doctors is an almost universal experience for people with Dysautonomia and other invisible illnesses. That’s what I was trying to give voice to in this article (and on this blog).

-There was a controversy recently over at The Mighty and some disabled writers have decided to no longer write for them, which I think is a great loss. You can read a bit about it here and you can follow the #CrippingTheMighty hashtag on Twitter to read more responses. I think overall the comments were justified, it started good dialogue between the writers and editors, and The Mighty has made some changes in light of what happened. I decided to keep submitting writing to them because I think it is still a good resource for voices who discuss disability and illness. 

- I celebrated not having to drive to Stanford by finally getting my flu shot. Excitement! Husband works at Costco so he worked all morning, came home and picked me up, and then we drove back over there (that dude is amazing). He got to show me what he has been working on recently and I got to sit on the couches they have. I love couch season at Costco. It’s a nice way to remain in my natural habitat outside of home.

-I haven’t discussed this much on the blog, but I’ve been fighting a very exhausting, protracted battle with the insurance company over my disability insurance. As a public educator, we had to pay into a private system. They awarded me a few months of short-term disability at the end of 2014 but denied my long-term disability and the last few months of my short-term disability. I have not received any benefits since January 2015. I’ve sent them over 100 pages of medical documentation, including letters from my doctors, but they determined that I was not “technically disabled” and am able to do all of the “extensive walking and standing” required for teaching. You could almost laugh at these words.

I have appealed multiple times. My long-term disability case was a lost cause. That part is officially over. But I’ve been trying to find a lawyer to help with my last appeal for my short-term because I have no chance of winning without legal help. Finding a lawyer who will take a private disability case is nearly impossible. So few of them will. Many of my conversations with local law offices went like this:

            Me: “Hi. I was wondering if your law office takes private disability cases?

            Them: “No” *click*

            Me: "Well have a good a day anyway!"

A law office in San Francisco considered my case but months later decided not to take it. I then found a law office in Texas that considered taking my case. They were incredibly kind and easy to deal with and contacted me every week to keep me updated. A few days ago they informed me they ultimately were not going to take my case. I was given six months by the insurance company to appeal the decision but being ill, my mother passing away, and the struggle to find a lawyer ate up all of that time.

I submitted a one letter appeal this week one day before the deadline for my very last appeal. I’m trying to decide if it’s worth trying to find another, third lawyer. I’ve been dealing with this since I stopped working in August 2014 and this battle has caused tremendous stress for me. I've wasted so much valuable energy on this. This is the thing with the American for-profit insurance system: the sicker you are, the more benefits you need. It is a constant fight with insurance companies to get benefits and access to care. It is the job of insurance companies to maintain profits and deny benefits to protect profitability. It’s not personal. That is just how the system works.  

I long for this particular battle to finally be over with. I’m going to try to apply for state disability next, but I will likely be ineligible since I never paid into social security as a public educator. That’s the next battle. The prospect may be that not only can I not work but I cannot even get disability payments to help support my medical costs at the very least. This entire process has broken my spirit a bit. It has definitely had a physical cost. And I’m not alone. The struggle to get access to benefits and care is a struggle for many with chronic conditions.

I should've put a handful of glitter in the envelope when I mailed my last appeal. That would've felt like sweet justice.

-Husband and I left the house to go to the thrift store around the corner yesterday. Thrifting has been one of my favorite activities since I was in high school, and it was so great to get out. Oh, the benefits of doing a little better! This particular store is not very accessible and is really difficult to navigate in my wheelchair but I still like to go when I can. We only stay for a few minutes usually before I start to crash but I’ve gotten really good at making a quick of survey of everything to find some treasures before we go.

-My sister-in-law and baby nephew stopped by for a visit a few days ago. Look at all of this handsome.

-My daffodils I bought with my mom a few years ago have already started to sprout. I can't wait to see them bloom. They are my favorite flower. 

-What terrible news this week that we lost two brilliant souls, Alan Rickman and David Bowie. We watched Labyrinth and one of the Harry Potter movies this week. I have the Harry Potter movies memorized because I’m an unabashed Potter obsessive but it’s always great when husband wants to watch one with me. Rickman steals the show in all of the films and played Snape, the most complex character in the series, brilliantly. What a loss of a great talent.

How do you choose a favorite David Bowie song? It’s so difficult. But this one from Labyrinth has been one of my favorites forever and I learned it years ago. Sadly, I never performed it. It's such a gorgeous song. 

I hope you all had an ok week!

The Week that Was, January 8th

I'm considering trying to write some weekly or bi-weekly updates on the blog to supplement the longer, topic-driven posts I usually write. I always need a reason and purpose for doing anything here, especially to convince myself that this is not an exercise in narcissism, so doing this might highlight a bit of “slice of life” of living with illness, with emphasis on “living” to show that although there is sickness here there is life too. This might help me post more too.

I had a bit of a miraculous week this week. Let the record show, it is possible to have an ok week!

* The last few months have been especially rough. I felt like I’ve been just surviving day to day, so a week where I wasn’t just surviving has been a welcome change. I think the insanely expensive, medical-grade probiotics I’ve been using are helping. I'm taking them to kill my current intestinal infection and to treat the constant oral thrush I have, which is caused by my steroid inhaler and rescue inhaler I have to use multiple times a day. I have to use the inhalers to help offset the respiratory weakness from Myasthenia. Ah, the constant struggle to manage side effects and even side effects of side effects. Sometimes it’s more difficult than managing the primary illness. 

But I think they are helping. With how expensive they are, they better. My GI doctor originally gave me these probiotics and when I see him again in two weeks I need to ask him for a cheaper option because these are out-of-pocket, not a prescription. Oof. 

Designer-priced bacteria

* So I took advantage of this miraculous week and my husband and I went to our local arts center (which we had inexcusably never been to) that’s right down the street. They have an exhibit of one of my favorite artists, Alphonse Mucha. My mom loved him and some of my first memories are staring at the prints she had of his work. Now I have one of her prints and some of my own. The exhibit ends this weekend and I would’ve never forgiven myself if I had missed it. They had some original drawings, some prints and lithographs, and a lot of information about what inspired him and his life. I had no idea that his nationalist sentiments were so pivotal to his work. It was a great experience.

I can’t remember the last time my husband and I went somewhere for fun together that wasn’t appointment-related so something like this was overdue. Despite the fact that my husband is also my caregiver, I’m learning it’s important to still maintain our relationship as husband and wife—to cultivate and nurture that role just as I did before I got ill. We are always trying to come up with things to do together.

The building was luckily very accessible and had an elevator to get to the other floors, which is always welcome. I’m hoping we can go there again when they have other exhibits.

* Although, there is constant debate about whether those with chronic illness and autoimmune diseases should get a flu shot, I get one every year. If you aren’t sure if you should or not, talk to your doctor about it. For me, the risk of getting the flu outweighs whatever risk there is with the immunization. I’ve never had a problem with it. I always get it in January but I swore last year I was going to get it when it came out in October. I still haven’t gotten it.

So yesterday, we headed out to Costco so I could finally get the shot. I was feeling really terrible yesterday (likely the fallout from our outing) so while we were in the car I told husband I didn’t want to go. As we circled back home, we drove by a new thrift store and I suggested we make a quick stop. We went for a few minutes and then husband rolled me over to the used bookstore next to it. I picked up a few books I’ve wanted for a long time. We left the house together for something fun TWICE this week. It’s unbelievable.

I probably should’ve spent yesterday resting or really pushed myself to finally get my flu shot, but I spend most of my life making good decisions and doing whatever my body demands that I do. I guess sometimes it’s ok to not make good decisions in favor of living a little.

* I talk to quite a few Spoonies on Twitter and I had a conversation yesterday with someone in Canada. She posted a picture of an accessible dressing room that looked like a dream but then explained that unlike the Americans with Disabilities Act we have here in the states, Canada has no comparable legislation. Someone else chimed in and said the Netherlands also does not. I had no idea so many industrialized nations, even ones who are politically more progressive than this country, have no accessibility legislation. They have no legal recourse to ensure public places are accessible. It solidified for me that disabled rights are a global issue, not just a national or local issue. Although the ADA has limitations and lacks enforcement, it does provide legal protection and makes the disabled a protected class of citizens in this country. We definitely have more work to do globally.

* When I’m feeling slightly better, it’s like a veil is lifted from my life, the perpetual shadow recedes and I can think about the future instead of just surviving moment to moment or each day. As I’ve been feeling better this week, I’ve been thinking more about changes and additions I want to make to this blog and my ultimate project of writing a book. I still have so much research, reading, and planning to do. I started reading Laurie Edwards' In the Kingdom of the Sick, which I’ve started multiple times but never finished. Eventually I’ll have a review of it in the Spoonie Reads section (along with all the other books I finished recently).

*It's been rainy here all week (who knew that was possible in California?) and playing my keyboard while it rains is one of my favorite things to do. I've been playing one of my favorite standards, "When Sunny Gets Blue," which is a perfect rainy day song: "Pitter, patter. Pitter, patter. Love is gone so what could matter?"

* One of my Spoonie friends who I talk to regularly (I even sent her a Christmas card) sent me a link to this great article about what it’s really like to live with chronic illness, in contrast to media representations of illness. It’s a great read. I also recommend this article from a woman on the patient advisory board at Dysautonomia International about her struggle to get a diagnosis for POTS. 

* I have to do an MRI at Stanford next week so I'm trying to mentally prepare for the long trek. Our last trip there wiped me out for weeks so I'm hoping this trip won't be quite so exhausting.

* I have exercised almost every day this week, wrote two blog posts, and I’m having kind of a good hair day today. A miraculous week indeed.

I hope that all of you are having an ok week.

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?