Thursday, October 29, 2015

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 1st, 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. 


  1. I've been thinking about you a lot lately. Thanks for opening your heart to your readers. You are a class act. <3

  2. I admire your strength, as always. I would be interested in hearing more about this book you're thinking of writing. And I have the same thing as you - I'm often up most of the night, then finally get tired when everyone else is getting ready to wake up. I think part of it's the adrenaline surges all night. Also, I totally understand about just wanting to bail on appointments and give up on trying to feel better. I walk that line all the time. At any rate, I'm thinking of you. Stay strong.

    1. Thank you April for always being so supportive. I'm so glad we started corresponding this year. I think of you often and hope you're doing well. I'm glad we can be on this crazy ride together at least ;)


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