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.