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. 

Celebrations

So it is my 34^th birthday today....a very sassy 34

My birthday is a weird time of year since I got ill. POTS entered my life in 2011 and things started to go rapidly downhill for me around my birthday that year. I was still pushing through the PhD program and everything hit critical mass that fall. By October, I was fighting so hard to pretend everything was ok.

By the time my birthday hit, the gig was up. I left the PhD program on November 2^nd 2011 and life looked crushingly uncertain. It’s three years later and I am in the exact same place, at rock-bottom and gazing wearily once again at a very uncertain future.

So yea, my birthday is always a strange time. I am constantly measuring time and illness—thinking “this time last year I was better. I was able to do this and that.” Last year, we had a party at our house because my BFF and I celebrate our birthdays together since they are so close. We had a good time and danced a little. I had finished my first evaluation as a full time professor and did so successfully despite being putting on a brave face while ill. I felt badass and accomplished. I inhaled some decadent chocolate cake in celebration.

This year is completely different. I'm not working. My new office I prepared during the summer is sitting empty. There is no dancing. Instead, I spend my days asking myself “Can I safely drive, shower, prepare a meal?” "Am I able to walk to my kitchen?" I sit on my couch or lie in bed and ruminate on life, surrendering to this opportunity to recover an authentic self. 

My goal was to just show up and be present for my birthday gathering this year. I did have to lie on my friend’s bed through part of it, but I showed up and had a good time. I missed everyone else's birthday this year but made it to my own at least. We sat around and talked about the absurd things we always talk about. It was glorious.

I’m trying to remember that measuring is not living. Pretending is not living. 

My circumstances may be similar to three years ago but my outlook is changing for the better. Although this year has been an endless roller coaster of struggle, I’m working on bringing joy back into my life, which has been absent for years now. Climbing the academic career ladder and fighting a devastating illness blinded me from the things I used to love. When your body is just holding onto mere survival, there isn’t much room for anything else. But I am trying to re-discover the things I left behind.

I’m working on celebrating life and finding small pieces of joy in it by reclaiming my creative spirit.

Like music. I finally finished some songs I’ve been writing for years now and even got one recorded this summer. Music has been my guiding light for most of my life. I may have degrees in literature, but music is more important to me than any piece of literature. I desperately miss performing, but I still play and sing almost every day when I am able. I used to play in restaurants, bars, and weddings, and I took being able to perform for granted. Now, when I get the chance I really savor it. My dream is to record an album of all originals. It’s my number one life goal, and it will happen.

You can hear the recording of "Upright," which I wrote as a reminder to myself of my strength despite my limitations. 

I am listening to my records again. I have been listening to vinyl for the last 15 years, before it got cool again (I am such a freaking hipster). I’ve dragged this collection over state lines multiple times. I’m rediscovering records I haven’t listened to in years.

A few of my favorite things: vinyl records, Harry Potter, twinkly lights

I’m drawing and painting a little again. Just a little. 

I studied American literature, but since I left school all I’ve been reading is fantasy literature. I am reveling in reading whatever I want. When your body refuses to let you move, reading can be transportation.

One benefit of being ill (there are a few) is being forced to be still. I’m a workaholic, so this is anathema to my nature. My brain used to be constantly in motion preparing for what was next and what else I could achieve. But now that I’m regularly bed/couch-ridden, I must lie still and just exist in space. I remember the flavor of life and the pulse of community.  I am given time to reflect—to be truly tethered to the present. This has been transformative. I crave the things I genuinely love, relinquishing the trappings of adulthood that can blunt so many of our real desires.

It’s an opportunity to peel away the layers of self we build to present to the world to instead find a truer self, one that has been lost in the saturation of daily life. It’s been a chance to say I survived going over the edge of the cliff, a chance to observe with clarity and then ask myself, “What do I really want? What meaning can I make from this experience?” 

This sounds hokey, but it’s a reality I’m living. It’s brutal and harsh but beautiful and worthy of celebration as well.

I was a writer before I was anything else. I came to music as a writer. I became an English major because I’ve loved writing and pursued an academic career on the strengths of my writing. Starting this blog and writing again feels like a rebirth and celebration of what I still have and what I have learned. It is the gravity that pulls all the random pieces to make them unexpectedly fit together.

Even in the darkest of times, there can be an opportunity for celebration. Today I celebrate what I have overcome and what I’ve endured. I celebrate who I am, those I love, and all that life gives and takes from us that is truly worthwhile.

The even-numbered years seem to have a better track record for me. I'm letting go of the things that don't matter. I'm bringing the sass. Let's do this 34 

I even ventured outside briefly today. The demon in the background appreciates the sass