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.