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. 

Lamentations and Celebrations

This month has been a bit of a whirlwind, a blur, a catastrophe, a gift.

Physically, I have not been doing great. I’ve had some pretty severe insomnia. I’ve been an insomniac my whole life and in moments of stress and physical strain, it gets significantly worse. I’ve had a few nights this month where I don’t fall asleep until the sun comes up. Then sleep for a few hours and get up so I can stick to the strict med routine. Naps are the worst thing for insomniacs so I trained my body not to nap many years ago. Naps and I aren't on speaking terms. Sleep is the most fundamental element for staying afloat with chronic illness, and I need it to breathe ok. But I know eventually things will normalize. Although I don’t think I was ever meant to be a norm.

We had the celebration of life gathering for my mother two weeks ago at my parents’ house. A gathering was the best way to celebrate her since we’ve had so many at their house throughout the years. I was worried about being able to show up and interacting with so many people, but I managed to piece myself together enough and I did it. It’s brilliant sometimes what strength we have in our depleted reserves that we are able to tap into sometimes. It was actually a wonderful day. 

I saw many people and family I had not seen since I was very young. About 70 people came, which is a testament to the impact my mother had on people. I wish I could’ve had more energy to talk to more people and hear more stories, but I’m satisfied with what I was able to do. It was a day injected with positivity and love that me, my sister, and my step-father all needed after the trauma of the last year. It almost felt like an episode of “This is Your Life” with seeing people from different eras of my life at the same time, all coalescing around the influence of my mother.

Almost my whole gymnastics team reunited. We reminisced about all the trouble we caused together 20 years ago

Now I’m working through the grief—in a haphazard fashion because I’ve never done this before. As my mother was in hospice care, I had anticipated that this part would be easier. I thought since I had a chance to say goodbye, and I was able to prepare, minimally, it would make grieving easier. I would feel relief and gratitude. I do feel those things, but they are muddled underneath giant waves of regret, sadness, and disappointment.  

We had a slideshow of pictures of my mom at the gathering and looking at them felt like falling back in time, back to when my mother was my best friend and we could laugh and talk. Back before I was ill. Back when my family was whole and all the pieces seemed to fit together, unlike the jumbled, disjointed present that lacks congruity. But it was a day of remembrances and joy, and I'm incredibly thankful to have experienced it.

So I’m still trying to chart a path forward. Try to work through the grief of losing my mother far too young, the grief of losing my health and independence, and feeling tremendous gratitude for what I still have. Those remnants of what remain are gifts—treasures bestowed in the form of lasting relationships, talents, memories like movies I can still get lost in, and love that still reverberates all around me. I finally feel some comfort again when I listen to and play music, which is my greatest solace. If you walk by my house, you’ll hear Stevie Wonder, Van Morrison, Led Zeppelin, or Vince Guaraldi blasting. I'm still listening to the playlist I made of my mother's favorite music. You’ll also hear me playing some Elton John or jazz on my keyboard (and sadly not singing still but hopefully eventually), but I'm still playing. I'll always keep playing.

It was my birthday last week. It was a hard one but I still managed to have a good time. I went thrifting with my besties, which we haven’t done in some time. My nephews came over and brought me mermaid pajamas. Husband and I ate some sushi. All around, pretty solid. 

The best part was seeing everyone’s pictures for the “Go Blue on 22 for Dysautonomia” event I created on the Facebook page. It was a great way to raise some awareness communally and celebrate together. I’ll definitely do it again next year. Here are a few of the pictures a few people shared that day:

My BFF Carrie Anne and her daughter Isobel

My mother-in-law: A nurse, all around badass, and always my biggest cheerleader

My gorgeous sister and her friend Scottee

My sister-in-law who was born to wear blue

My crazy nephews

My BFF and sister in music Melynda

My Dysautonomia shirt I ordered didn't come, but I had a backup plan

Next year, I'm hoping I can have a bit more energy and focus and I'll put all the pictures people shared together and post them here. That was all I was able to pull off to celebrate Dysautonomia Awareness Month but I'm satisfied with it. It was a good day.  

After some time off, I have multiple appointments in November to prepare for, including one at Stanford next week. I’ve been debating not going to it the last six months because my appointment there in May was very disappointing, for a variety of reasons. There is an enormous physical and financial cost to going to appointments there. We have to stay the night now because I can’t do the 5-7 hour drive and the appointment in the same day anymore. I’m hoping this next one is better because it’s difficult to fend off the “I give up. Burn it all down” impulse and disengage from the medical process, but I’m going to put my head down, show up, do my job, and be there. It's all part of the ultimate quest for a better quality of life. I'm trying to remember that. It’s at least a reason to leave home, see the beautiful Bay, and miss my cats.

So thanks for the patience as I’ve been posting sporadically the last few months. I’m hoping to get back to life back to reality in the near future and start posting regularly again. I have a long list of posts to work on. I was even thinking about signing on for NaNoWriMo that starts on November 1^st, but I think that’s a bit ambitious right now. I want to stop putting off the book I want to write and just jump in, but I think I need some attainable goals right now; writing 50,000 words in a month just isn’t realistic right now. I’m going back to my goal of getting at least one post a month up. That sounds pretty manageable right now.

It feels a bit like I’ve drowning this year and then surfaced into a world that looks the same but has irrevocably changed. But it’s time to grow some legs and adapt to this new world. This year has been difficult, and when I look back at my birthday post from last year, I want to get some of that spunk and spark I had back. I will. I definitely will. Loss and grief do not "happen for a reason" but it is possible to find some meaning and learn from them. Here's a beautiful article that articulates this better than I ever could.  

I am learning good lessons from the ups and downs and still standing strong, even if only a few seconds at a time with the power of compression stockings. I have a good feeling about 35. Let’s do this. 

10 Songs

I’ve written before that as illness consumes your life and your body, it often feels as if your identity and your worldview is violently washed away. There are positive and negative implications of this. The negatives are obvious. I read stories of Spoonies who have lost their careers, their spouses, their financial security, their friends, their passions, and even some who became homeless. It’s difficult not to feel like your sense of self is under assault. 

Yet, battling illness and disability provides gifts as well. It becomes an opportunity to discover a truer self, one that has faced the Gorgon and survived. You’ll never know who you really are until your worst nightmare becomes reality. You’re given an opportunity to create meaningful new relationships and to strengthen existing ones.

Illness also makes you cling tighter to your passions. Your passions can link all the many versions of yourself through the years and serve as a reminder of your gifts and contributions to the world. They can provide some certainty and a tangible source of equanimity and strength to weather the chaos of illness. I read stories of Spoonies who are artists, cooks, crafters, etc. Illness forces you to slow down, and this can be opportunity to delve into whatever passion you have. 

A few years ago, my husband gave me a challenge: create a mix cd of your 10 most favorite songs. He created his right away, but I’ve been thinking about mine for years now. I’m a musician and songwriter, and music is probably more important to me than almost anything else. I finally finished my list and it’s been a means to celebrate life experiences, since getting ill and before. 

Tori Amos, “Liquid Diamonds”

The album this song is from is almost 20 years old at this point, but my reverence to this song has never subsided. Like most Tori Amos fans, I’m obsessed with her music. Her catalog includes hundreds of songs and I know them all. She is the reason I became a musician. This song has a quiet ferocity that pulls me in, under the waves of all the water imagery. It's the jazziest song she's ever done. I've seen her live a few times and was supposed to see her a few months ago. I was too ill to make it but my best friend went, and I got to live it through her. 

Nat ‘King’ Cole, “There is No Greater Love”

Well, I owe my desire to become a musician to this guy too. I like to wrap myself in his velvet voice. He has taught me everything I know about how to play standards and improvising. Not many know he was also a brilliant pianist and organist, though he was marketed as a vocalist. He’s been one of my favorite artists even before I was a teenager. This is my favorite song off my favorite Nat Cole record.

Led Zeppelin, “Stairway to Heaven” BBC Sessions

I’m serious about Led Zeppelin. I mean really serious. They aren’t my favorite band; they are my religion. Stairway is not my favorite Zeppelin song but this version is just perfection. Page’s solo is transcendent. My husband introduced me to them, and our wedding ceremony was all Zeppelin. My husband also loves them and whenever we travel, especially when would go hiking, we would listen to Zeppelin. There are so many great memories that unfurl when I listen to their music.

Miles Davis, “All Blues”

I have so much admiration for Miles Davis. He was the ultimate innovator and so many genres of music owe him a huge debt, not just jazz. I have every note of his album Kind of Blue memorized, especially this one. I listened to his music often when I was studying in my undergrad and in grad school. I especially love Bill Evans' solo in this one.

Jeff Buckley, “Lover, You Should’ve Come Over”

I like artists with prodigal talent who treat any form and genre of music as material to claim and transform. Buckley was a brilliant songwriter, musician, and a fantastic cover artist. I’ve been listening to this song for 20 years, and I can play it as well. I’ve performed it a few times, but no one can really match Buckley’s vocal range. 

Nina Simone “Black is the Color of My True Love’s Hair”
Nina Simone could play anything. Like Buckley, she claimed any genre of music and blended them seamlessly. This song is like lightening on my spine. She was primarily a classical musician, but she melded folk, jazz, blues, classical so well. One of my favorite albums is her version of folk songs from all over the world. She could do anything. I got to present a paper on Simone at an academic conference, and I performed her song "Four Women" at a production of The Vagina Monologues. Her music has been an integral part of my life for so long. 

Dave Matthews “One Sweet World”

Before my husband and I got together, we used to talk to each other online. A mutual friend connected us. We would talk on ICQ, and if you weren’t using the internet in 2000, you probably won’t know what that is. It’s proto-social networking. It was so long ago, that we would discuss what music we were downloading on Napster. At this point, you could say we grew up during the Stone Ages of the internet. He sent me this song one night. I’m a sucker for good songwriting and Dave Matthews can write a song. His band masquerades as a pop group, but they blend jazz and world music in as well. This is a love song to mother earth. It’s my husband’s favorite DMB song too. 

Kate Bush, “Running Up that Hill”

There are many reasons why I love this song that include the complex questions it asks about gender and that despite the dated synths and drum machines, it still sounds fresh over 30 years later. I bought Hounds of Love on vinyl when I first got a record player and have been listening to it for almost 20 years. It might be the most-played vinyl record I own. I don't know what planet Kate Bush is from, but I want to go to there.

Norah Jones, “Something is Calling You”

This was recorded before her blockbuster first album, and I think her earlier recordings are better than that album. I love this little song. Like Simone and Buckley, she has knack for seamlessly blending many genres of music. I'm not sure everyone has figured out she is really a country artist more than anything else. When my parents had a boat, we would fish all day and I’d play a Norah Jones mix cd on the radio. This song is a lazy summer day, fishing and hanging out with my parents and husband. Pure bliss.

Sting “Why Should I Cry for You” Live in Berlin

Like I said, I’m a sucker for good songwriting. I’m not a very good hipster when I love music that is so mainstream, but I have always loved Sting’s intellectual pop songwriting and his musicality. This song has gotten me through the hardest times this year. I would listen to it on repeat and when I was struggling to drive to work and when I was sitting in my yard thinking about life, accepting the difficult cards I had been handed.  He wrote it for his father, and his story about him moves me to tears.

Sam Cooke, “A Change is Gonna Come”

I don’t like rules so there’s one more. When my sister and I were young, my father would take us to the Sacramento Delta to cruise around on his friend’s boat. Apparently, I have a lot of boat-related memories. When I think of those memories, Sam Cooke is always playing. I really believe Sam Cooke's voice has healing powers.This song has also gotten me through the difficult times this year. I know a change is gonna come.

This was a self-indulgent exercise but a good, positive one. I recommend this to anyone: create a list for yourself of whatever your passion is: movies, music, tv shows, sports, books, life memories, anything. For the Spoonies out there, I think it's useful to do positive exercises like this to draw ourselves out of the fog of illness. It will remind you of who you are, what matters most to you, and let you reminisce and celebrate your life.