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.

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 Four: Resilience

I don’t have much to say this week. I hope that all of you reading this had a good holiday if you celebrated Thanksgiving, and if you didn’t, I hope you had a good week in general.

I've been physically in pretty bad shape still, but I got to enjoy the holiday. I anticipated it being more difficult since this was the first holiday without my mother. It was definitely difficult but my family and I managed to still celebrate and enjoy our time together. It definitely won’t ever be the same. My mom was my ally in the family; she was the only one as weird as me. We had the same humor. She was the person who loved me the most in this world. She was my best friend. 

Now it feels like a piece of my soul is irrevocably gone. 

But it’s ok. 

The thing with surviving something traumatic and devastating is you think you can’t survive it. And then somehow you do. You put one foot in front of the other and just keep going.

I can survive it. I can keep going. I’ve built up a pretty strong reserve of resilience the last few years.

That’s what I’m thankful for this week: resilience. Before I got ill, I was a survivor but I don’t think I was very resilient. It’s taken years and quite a bit of training to learn resilience. You have to with illness or you’d never be able to get out of bed every day.

Resilience means hope

It means acceptance

It means survival

It means renewal

And renewal is a promise for a better day 

I’m not consciously feeling resilient right now but I know it’s there. I know it’s my life support that is keeping me going. It’s giving me strength unconsciously.

I’m grateful for that strength to enjoy every bit of life right now: spending energy on creativity, seeing my friends, watching their children get older, spending time with my family, eating pumpkin pie, watching Star Trek with husband, going outside, relishing that first note when I play a song, breathing in chilly autumn days, drinking a good, strong cup of tea.

Every bit of it.

I hope you had moments to savor this week too, and whatever battle you are fighting, that your resilience is sailing you to the other side as well. 

Outside to walk a few feet with my trekking poles. Who could ask for more?

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