Some Goals for 2016

I meant to get this post up in December or at least a few weeks ago, but this post is a compliment to my post where I outlined what a typical good day looks like. I spend much of my time coordinating my care, resting, and working around my symptoms. I make weekly goals in my planner every week and then prioritize them, always making exercise number one no matter what else is going on that week. The rest of my goals usually involve phone calls, paperwork, appointments, etc. Thus, my life often feels like it boils down to constant management of my own health. I need a reminder to focus on life and my other goals.

I made this list in December and strategically left out my health-related goals because I’m trying to find a way to carve out a life, or a semblance of a life, outside of illness. I would say that the last few years, illness has controlled my life no matter how much I try to make it the other way around.  I like to believe I’m the captain navigating these rough waters, but often I’m really just the vessel plodding along in the storm. I have surrendered to the fact that illness is a constant source of chaos but it doesn’t mean I can’t at least attempt to make a life in conjunction with that chaos. This is what I’m telling myself at least.

My BFF Carrie Anne has an enviable Life List and she inspired me to make one a few years ago. It’s funny; I actually recently went back and looked at the one I made, which is from my pre-sick life, and I put things like “hike Yosmite’s Upper Falls,” “go whale watching,” and “publish more academic articles” on there. Uhhh….not quite. I’ll have to start from scratch at some point on it. 

But here are some goals I think I can manage this year:

1. Get Back to Creativity

Whatever your passion or skills, creating and the desire for self-expression are the essence of our humanity. I have always been artistic but I lost some of that creative spirit when I became an academic and while dealing with illness. I used to play music regularly, even getting paid gigs for weddings or at restaurants. I worked as a children’s illustrator for years at our local library. I was constantly creating and producing. This is my number one goal for this year: do something creative every day.

I’ve been playing my keyboard almost every day for a few months now so I’m on track with music. Even though I cannot perform right now (which was always my motivation to keep practicing), I’m working on learning and memorizing new material and trying to improve. I’m hoping to try to focus more on writing, finishing, and recording my own material. That’s at the top of my list for my creative goals.

I dream of getting back to painting and giving friends and family gifts of artwork regularly. I dream of sitting in my yard and drawing for 10 minutes at a time and taking breaks. Honestly, working as an artist for so many years put a damper on my desire to create my own artwork. As with all creative pursuits, it takes commitment to improve as an artist and develop skills. I have not been committed to painting for many years. But I still desire to do it more consistently.

I have some clear writing goals. I’m working on getting at least one blog post up a week, getting more writing published, and working toward writing my book. I got six posts up last month, so I’m already on my way toward reaching some of my writing goals.

2. Go Outside

I try to remember what pre-sick life was like and what I did every day in those years, and I would not describe myself as necessarily a home-body then. Yet, since I’m home-bound now, I don’t even leave the borders of my own home with any frequency. The boundaries of the world I inhabit now can be measured in mere feet. There is no literal or figurative horizon to look out to and build dreams on. My horizon is now internal.

We live in a duplex that has an enclosed yard and that was the main reason why I wanted to live here. I try to sit outside in our yard every day. It’s difficult during the warm months (which is most of the year here), but I try to time it right each day to get outside even just for a few minutes. I try to walk with my trekking poles regularly (I’ve had limited success with this in the last few months unfortunately). My goal this year is to get outside every day. 

Along with meditation, this is fundamental to my mental health and sense of well-being. Getting outside, even just sitting in our yard, helps me feel like I am part of the world and feel less trapped. I talk to my cats and the birds in our yard and watch the flowers bloom. It’s glorious.

3. Listen to more music

This is separate from number 1. Since I have to spend so much time resting, it’s a good opportunity to listen to music, yet I honestly spend much of my resting time either reading the news, watching documentaries, or staring off into space. I’ve been anxiously waiting for the full swing of the election season so I’m already spending too much focusing on it. I’m not very interested in football or baseball. The World Series or the Super Bowl are barely a blip on my radar. Politics is my sports.

But music gives me more joy than almost anything else, so I would like to disconnect more and just listen. Listen to all the new music from my favorite artists I haven’t listened to yet. Listen to some of my records I haven’t listened to in ages. Just listen.

4. Read more

I wrote a post a few weeks ago that listed the books I had finished in 2015. I finished 20 books but I’m aiming for 30-40 this year. I know I’ll likely never get back to the 50-70 I read when I was an academic but it will feel close enough.

5. See more of my friends and family

Even though I don’t get out much, I see some of my friends somewhat regularly. But I want to see more of them and see more of my family. The last few years have not been kind to my family and our relationships suffered significantly under the strain of my mom’s failing health. I have high hopes that we can start to move forward this year. I want to see more of my husband’s family too, especially my crazy nephews.

I’d love to be able to drive again. That would make a huge difference with being able to see family and friends more often. Hopefully at some point I can do that again.

6. Work on projects with husband

My husband is a builder and maker of things but the times I have participated in his projects have been slim to none. I have a gorgeous 1920s antique armoire that my mom saved for me that desperately needs to be refinished. It’s been sitting in our garage for three years and I can’t wait to see it back to its full glory. It’s a serious undertaking but husband is on board to help with it.

We have some other projects on the table. We ordered a flint-knapping kit last year and have been waiting for some warmer weather to practice making hand axes. We can party like its 10,000 BC and make some prehistoric tools. Sounds fantastic.

This could come in handy in the zombie apocalypse

7. Travel (i.e leave the house for things that are not appointment-related)

I sometimes think about what my life would look like if illness hadn’t taken it over. I’d still be a workaholic and spending much of my time working, but I’d also be playing music and travelling. I have always loved to travel. I honestly cannot remember the last time I left my town for something other than an appointment, even just to go to neighboring towns. One of my BFFs moved to the next town over a few years ago and I still haven’t seen her new place. My sister moved to the Bay Area a few years ago and I still haven’t been able to visit her there yet either. It’s just absurd.

I want to attempt to venture out this year. ‘Travel’ for me doesn’t mean I’m going to travel up the Pacific Northwest (though I’d give anything to do that again). It means going places that are nearby, even just a mile or two down the road, and the excursion NOT being appointment-related. I’m going to actually count any activity where I leave the house that isn’t for some kind appointment as “travelling.”

There are places I really want to go that are not that far from us but would take some serious planning to pull off, including having to stay overnight. I haven’t been to Yosemite in 3 years, which considering we used to go there multiple times a year, is desperately sad. I’d love to take a trip to Monterrey and go the aquarium. We both love the Foothills and had family in Sonora when we were growing up. Ultimately, our goal is to move there, but I’m hoping this year I could pull off a day trip there again. If I can start slowly working my way up to these things, maybe we could finally get back to thinking about our bigger travel plans like visiting my husband’s aunts in southern California again or finally making a trip to Yellowstone. Someday.

8. Meditate more

I had a great therapist when we lived in Nevada who had a background in mindfulness, and she helped me get back to meditating. I used to do a lot of yoga years ago and meditation was always part of that practice. I would like to consistently meditate again, preferably once a day. I have found that morning is the best time for me, and I have actually discovered that it helps to stabilize my heart rate and breathing. I usually wake up with my heart rate around 160 (thanks POTS) and struggling to breathe (thanks Myasthenia), but sitting and focusing on my breath helps to improve these symptoms that are usually the worst in the morning. But more than anything else, meditation offers benefits for mental health. For me, it has improved my anxiety significantly and helped my depression too. When I feel myself starting to spiral out of control mentally, I try to sit still for a few minutes and just focus on my breath. It really helps.

And just for fun, here are some big dreams and goals—some I’m actually working toward and some that are just crazy ideas I want to throw out to the universe:

1.      Finish my album of originals and sell it or make it free online

2.      Write a book (or two or three)

3.      Perform regularly again

4.      Start a non-profit that will help disabled chronically ill patients get access to important resources

5.      Travel to the UK

6.      Be able to drive to my friends/family’s house and be able to drive myself to local appointments

7.      Organize fundraiser events (for Dysautonomia, Myasthenia Gravis, and Alzheimer’s)

8.      Be able to teach in a classroom again (or any capacity really)

9.      Take freelance writing jobs

10.  Have a vegetable garden that I am able to maintain

11. Go camping

12.  Get an MFA or finish my PhD

13. Sell some of my artwork or give it away for free

I don’t know if I’ll accomplish any in this last list but these goals beckon to my soul for completion someday

I recommend making a list for yourself also, making sure to separate the health goals from your life goals. Even as I was writing this, I kept finding myself listing health-related desires. This was a good exercise to try to delineate my own desires from the health-related goals I’m working toward every day. We have to remember to live sometimes, even if much of that life has to be lived internally. There are still universes within each of us that deserve exploration.

Month of Gratitude, Week Two: That One Thing

Man this is going to be an emotional post.

Like I mentioned last week, I am writing one post a week this month about gratitude, specifically how illness has taught me to feel more gratitude.

As illness peels away layers of identity and you’re left with just the essential, you are able to see the very center of your happiness and what feeds it. I hope you have one thing, more than anything else in your life, that illness or pain has not taken from you and brings you the most joy in life.

My one thing is music. Aside from rap and modern country, I like most music genres (even those two I listen to occasionally). Jazz is my home but I also love classic rock, world music, alternative, blues. I have probably mentioned before that I’m a musician/songwriter and have been for a good portion of my life. If I could choose just one profession in life, I’d be a performing songwriter. Although I was rarely paid for it, I did get to live that dream. I haven’t talked about music much because it’s one of the most painful aspects of illness for me. I haven’t been able to perform in about a year and a half, and because of my breathing problems, I had to stop singing a year ago. It feels like I have literally lost my voice.

But this wasn’t always the case. 

My whole life I begged my mother to let me take piano lessons. Most kids are forced to take them, but I wanted them desperately. She couldn’t afford to pay for lessons, so my first year in college I made enough at my job to pay for lessons myself. I took lessons for about two years. My piano teacher would often put classical music in front of me but she humored my love of jazz and my need to improvise. Although I didn’t take lessons for long, she taught me how to create arrangements and improvise. She used to tell me, as I was playing something from a piano book or something classical, “you don’t have to swing everything.” The rhythm of my heart is jazz swing. Even now when I find myself trying to swing some music that doesn't need it, I think of her teasing me and I laugh. 

When I was a teenager, my best friend used to live out in the country and I would use the time I spent picking her up to sing in my car. When one of my acquaintances during that first year in college started a band, I went out on a limb and asked if I they needed a vocalist. I had not really ever sang in front of anyone before, but I wanted to be musician, even if I had to pretend. I was in a band for about a year, and it was fun learning how to build a song with a group of people, but my bandmates had no desire to perform. We had different goals. The band disbanded and my friend and I started a duo together. We wrote a bunch of songs and would perform in coffee shops. We’d throw in a few Nirvana and Tori Amos covers since we were children of the 90s. We only performed a few times so I decided to take my nascent piano skills and start performing solo. Those first few shows must have been painful to watch. If I heard a recording of them now I would cringe. But I was determined.

A year or so after I started going solo, another acquaintance organized a show at a local renovated old theater. He made me the headliner. That was the first time I ever played for a live audience. I was only the half the musician then that I am now, but it is still one of my favorite memories. There’s nothing quite like sharing your passion with others and getting an instant response. I got great feedback and I pressed on with my dream.

I played in coffee shops, bars, restaurants, weddings, and even a flower shop that had a piano. I got to play for live audiences again when I did musical interludes for my college’s performance of The Vagina Monologues. One of my best friends is an obscenely talented keyboardist and we decided to join forces a few years ago. We started doing a lot of shows and it became a reason for all of our friends and family to gather. Those are still some of my favorite memories. Our last show was July 2014.

One of my favorite memories is when years ago I contacted one of my favorite artists Janis Ian, the consummate singer-songwriter. We corresponded through email a few times, and I asked her for any pointers she had to share. She told me that in her 60s she felt that she was just finally getting her stride with performing. I was planning on recording one of her songs and had hoped to include it on a cd I wanted to sell so I asked her about royalties. She responded that she didn’t own the song but wished me the best of luck and asked if I’d send it to her. I did record it but never sent it to her. That was almost 10 years ago. I suppose I should send it to her someday. (You can find the song, “The Come On,” on my soundcloud page). I don’t have those emails anymore but I wish I had saved them, if only to convince myself it wasn’t just a dream.

I didn’t play much while I was an academic and when I was teaching. I wish I had set aside more energy for it. I assumed, as so many of us do, that nothing would change. That I would be able to play music in the same way for the rest of my life. I was wrong.

When I got ill in 2011 and had to leave my PhD program, music was my solace. I wrote a few songs during that time that I’ve never performed or recorded, but hopefully will someday. I played a private gig for about 10 of my good friends in the program before I left as a goodbye gift. I had lost about 20 lbs and was very ill, but I powered through for them and I think they appreciated it.

After we moved back, my friend and I did a few shows together, but every single one I had pushed myself too hard to practice and I was in very bad shape on the day we played. That last show we did, I should've spent the day in bed but I'm glad I pushed myself to do it. I left each one feeling tremendously disappointed I couldn’t be the performer I used to be. Yet, I look back now and feel thankful for those shows. My mom was at most of them. Every time we played, I always tried to throw in a song just for her. I played Fleetwood Mac’s “Crystal,” one of her favorite songs she introduced to me, at one of our last shows in 2014. She was not well but I watched her sing along with me as I played it.

Now that so many things have been stripped away from my life, I can see clearly what I valued the most, what is integral to my identity. That is music and performing. I could accept never teaching again or having to use a wheelchair for the rest of my life, but playing music is non-negotiable. That will not be taken from me. That is the one thing that is mine still that gives me the most joy.

I still play my keyboard most days and still try to sing. I can get through about half a song before the respiratory weakness kicks in.  I don’t have the power in my voice I used to have and I don’t know if I’ll ever get it back. But that’s ok. I live on a quieter frequency now anyway.

When my mother was in the hospital and then hospice last month, I lost music briefly. Playing music and listening to any of my favorite artists/bands brought me no joy. But in the last few weeks, I’ve been listening to the playlist I made for her and playing my keyboard again and it is once again a source of solace. I played the piano at the assisted care facility where my mother was while she was in hospice. On that last day when we were all there to say goodbye, I played for about a half an hour and many of the residents gathered around the piano. One man who was in a wheelchair would clap along to every song. Although he was hunched over and had difficulty talking, he had an impeccable sense of time. I adjusted the time signature for each song to match his clapping. Right now, I'm trying to re-learn some Christmas music to play for them next month. I’m hoping to go back there soon.

I am going to get back to singing and I am going to perform again. Whatever that looks like, it will happen. I have a collection of songs that I’m ready to record and turn into an album, and that will happen. Illness has been a gift in that it has shown me that music was ultimately my greatest passion in life and it’s also inspired many songs I've written. I was able to record one last year, “Upright,” which you can also find on my soundcloud page and on the bottom of this post. Illness has given me a new sense of purpose and drive to play music as often as possible.

I didn’t mean to divulge so much and miss the point here. I guess I needed to look back and celebrate these memories I still have. The point is I hope that you also have one passion or joy that brings you the most pleasure and no matter what setbacks you’ve experienced that you are able to return to it again and again. That it is never taken from you. That it is your greatest solace.

I would’ve continued to take this passion for granted if illness hadn’t let me see it for what it was. 

No matter what, I still have all of those memories. As I talked in my last post about learning how to feel satisfied, I feel satisfied that I can still play, even if it’s not the way I ultimately want to. I still have it. It’s still there for me, and nothing can wash away what music has given me.

My wish for you is that whatever your greatest passion is, whatever that one thing is, that you can hold fast to it and enjoy it for as long as you can. Never surrender it. Make time for it. Celebrate its role in your life and your identity.

And then, more than anything, share that one thing with others. 

*Special thanks to Carrie Anne for all the great pictures over the years

Month of Gratitude, Week One: Satisfaction

As it is the month for gratitude, I am going to write at least one post a week this month discussing illness and gratitude. Although illness has taken many important things from me, there are many gifts it has given in return. One of the most important lessons illness has given me is to learn how to be satisfied and gracious in that satisfaction.

Dissatisfaction is a state of being for many of us, and it can be a valuable tool to help us achieve goals. I lived most of my life always thinking, literally, “what’s next?” I wouldn’t have been able to go to grad school twice, achieve my goal of getting a tenure-track professor position, climb mountains, or power through illness like a warrior the last few years if I didn’t know how to channel “what’s next?” into achieving goals.

Yet, this “what’s next?” also pushed me to make choices that weren’t good for my health and, more importantly, it blinded me to the immeasurable gifts I already had in my life. If I have one regret since getting ill it is that I took too much for granted and didn’t appreciate what I once had that is now gone. “What’s next” was a distraction from being mindfully present and allowing myself to surrender to satisfaction, to look around me and feel grateful for my life.

We are trained from a very young age to never be satisfied. We are conditioned to become consumers from the moment we are born and to look for “bigger and better.” Satisfaction, in American culture especially, is a truly radical idea. Everywhere we turn, we are constantly persuaded to want more and to be more. “Bigger and better” and “what’s next” are illusions; they create desires that can never be quenched.

Yet, as the speed in which my world spins has slackened, as the alacrity of my own body has dampened and my legs—once athletic and invincible—stumble along at a glacial pace now, I am now still much of the time. It has helped my mind be still as well. In moments that are thick with suffering when I’m lying in bed and surviving moment to moment, I am forced to live in the present. The pace of my world has significantly decelerated, but the images of life are no longer blurred in speed. They have color, texture, definition.

It seems ironic that illness would give me this lesson. If we are often told “your health is the most important aspect of life,” then you would think living with a life-limiting illness would be the most unsatisfactory state of being. Yet, “your health is the most important thing” is a platitude; it assumes that those of us who live with chronic illness have nothing because we don’t have “our health.” This is fundamentally false. The loss of my health and my independence has taught me to value what I still have and despite being ill I can still enjoy what I still have.

It has taught me that there are moments to savor in life. There are moments when all of the ingredients of life—the people in our lives, the words we say to each other, our perceptions of the world, our self-image—meld into something truly delectable. These are the moments when we can feel truly alive, feel the electricity of being human. These moments were not on my radar before illness—before I was forced to be still and live in the present. When you live under the spell of “what’s next,” it’s easy for these moments to pass by.

I try to find moments throughout the day to just breathe in satisfaction and feel it completely. 

Feel...

Satisfied with the limitations I have now and what I can still do

Satisfied with my appearance

Satisfied with spending most of my time at home

Satisfied with each moment I get to be outside and be part of the world

Satisfied with my relationships

Satisfied with my material possessions

Satisfied with how I physically feel in this moment right now

Satisfied with my talents and abilities

Satisfied that the present is here but the future is a mirage

Satisfied with the treatment I have right now

Satisfied with the time I had with my mother

Satisfied with the change I am able to enact in the world

Satisfied with the energy I can give to others

Satisfied that my condition may get worse or get better

Satisfied that I may work again or I may not

Satisfied that my place in the world is just as it should be right now

Feeling satisfied at times doesn't have to stop us from setting goals and seeking improvement in our lives and in the world around us, but it's ok every once in awhile to appreciate and value that what we have is enough. Satisfaction also doesn’t have to be a constant current and it is by no means a constant sensation for me, but illness has forced me to look around at the world and appreciate the gift of life. It is an integral part of living with acceptance. In those delectable moments I can say thank you for the giftedness of life, even if it’s just for a breath—but I’ll make it a long breath and try to feel an entire lifetime of satisfaction in that moment.

I hope that you also have moments of pure satisfaction, moments where you can just stop and say "thank you."

How has illness or any other setback in life helped you feel gratitude? 



Here's a great TED Talk about gratitude: "It is not happiness that makes us grateful. It's gratefulness that makes us happy"