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. 

Go Blue on 22 For Dysautonomia

As many of you know, October is Dysautonomia Awareness Month and I had plans to celebrate on the blog and some other ideas, but with my mother deteriorating and then passing two weeks ago, my energies were focused elsewhere.

Yet, I did manage to create an event to celebrate. My birthday is this coming Thursday and I am asking everyone to help me celebrate and raise awareness by “going blue on 22 for Dysautonomia.” I’m asking everyone to wear some kind of blue and post a picture of yourself with the hashtag #Dysautonomia or #MakeNoiseforTurquoise on that day to help me raise awareness. Turquoise is the ribbon color for Dysautonomia Awareness. The event is on Facebook and you can find it here. If you are a patient, you can use it as an opportunity to discuss what subset you have and celebrate your own perseverance. 

Ask others to join as well. Since many doctors and patients have never heard of Dysautonomia, it is up to us to help raise awareness about this serious condition. More awareness can lead to more research and more treatment options for Dysautonomia patients, especially considering there are no treatments designed specifically for the condition. All medications patients use are taken "off label." Most importantly, with more awareness many patients will not have to go through years of appointments, tests, and doctors who dismiss symptoms as "all in your head," essentially a universal experience for many with Dysautonomia. 

Dysuatonomia is referred to as an "umbrella term" because there are many subsets of the condition 

Feel free to join and participate! I bought some special shirts for me and my husband that will hopefully come in time.

If you would like more information about Dysautonomia, you can find accurate information and more resources for getting involved at Dysautonomia International.

So let's make noise for turquoise together, celebrate our strength, and raise some awareness together!

Here are some past posts that are helpful to understand Dysautonomia and living successfully with illness:

What is Dysautonomia 

The Spoon Theory 

Why Getting a Diagnosis Matters 

Living Authentically with Illness

Things to Say to Someone with a Chronic Illness

Dysautonomia and Salt: A Love Story 

My Dysautonomia Story 

Navigating the Medical System 

What have you been doing to celebrate Dysautonomia Awarenesss month? 

Learning How to Say Goodbye

Sorry for the radio silence the last month. It has been a rough ride. 

My mother went into the hospital at the end of September and started to decline rapidly. She passed away last Monday and it all feels like a blur. Time is twisting on itself and I can’t remember what happened when.

My mother has not been well for a few years, and her health took a nosedive at the same time mine did. We struggled to support each other and I’m trying to remember that I did the best that I could. My father, my sister, and I keep saying "it happened gradually and suddenly," and it really did. Trying to help my mother and figure out what was going on has caused tremendous strain and stress in my family. We had to place her in an assisted care facility earlier this year, at the age of 60. Her doctors struggled to find a diagnosis and although many of her symptoms seemed similar to dementia or Alzheimer’s, her doctors were skeptical of that diagnosis.

When she went into the hospital, we all expected that she would improve and be able to return to her care facility but every time I saw her she was worse and worse, until I got the call from my step father that she had to be moved into hospice care.

I’m still in shock.

Thankfully, she was able to do hospice care at the same care facility where she had been for the last 6 months, a fantastic place with people who took great care of her. I’m thankful every day that my step father found such a wonderful place for her. The irony is the facility is only about a mile or two from my house, but since I had to stop driving and became home-bound last year, I was not able to visit her very often. This is something that is causing me tremendous regret right now. I was there with her to say goodbye at the end, and as she was in hospice I would play the old upright piano at the facility for all of the other residents, for my mother’s spirit. The residents loved it so much that I’m hoping to go back there regularly and play for them, something I wish I had done when my mother was there. It will be a way to give back to the people who took care of her and treated her like family.

I pushed myself very very hard to be supportive and help my family the last few weeks and have been bedridden because of it. I’m getting to the other side though. We are having a celebration of life gathering for my mother this weekend and I’m working hard to regain my strength to be present. So many people will be there—people I haven’t seen in many years and some I’ve never met before. I made a playlist of all my mother’s favorite music to play during the gathering: Elton John, Fleetwood Mac, The Eagles, Joni Mitchell, etc. I also included some of the 70s progressive rock she loved, which I could never sympathize with. I owe her a great debt for the love of music and groove she gave me. 

It seems absurd that all of the people she loves are going to be in one place and she won’t be there. Absolutely absurd. We have had so many gatherings at my parents’ house over the last 10-15 years. We have a large circle of friends that we love like family and they spent a lot of time with my family too. It will be good to celebrate her with another party with food, music, good company.

I hope that everyone remembers her as she was. She was one of the most generous people I’ve ever known. My sister and I both inherited her work ethic and perfectionism. Later in life, she became one of my best friends. My favorite memories with her are when my parents took us to Hawai’i in 2006 and 2008. She didn't want to get in the water but she waited for me patiently as I spent entire days in the ocean. She was the only one who really understood my strange sense of humor. I’d show her weird videos on YouTube or the latest memes and we would laugh so hard we’d cry.

There are hard days ahead. My birthday is next week and I won’t wake up to a call from her. We won’t watch the Macy’s Thanksgiving Day Parade together like we always did. My parents' wedding anniversary is in a few weeks, and they would’ve been married 24 years. But I know that as time goes on it will get a little easier. I’ll have less regret and disappointment and will instead only value the good memories. I’ve never lost anyone close to me before and it seems like a cruel twist of fate that my mother would be the first.

 I wrote her obituary and you can read it here.

I know that she is finally free, free of the body and the brain that caused her so much torment, and I at least feel happy for her that she is free. I'll never understand why it had to be so soon. I'll find some peace with it eventually. Love you forever mom.

Walking here without you now

I will always have you with me

Your blood flows through my veins, the imprints of life you imparted that made me real

Your green gaze I inherited

The succulents and flowers you planted that flourish still, as if your fingerprint is there

Our memories of sea, salt, air 
The scent of islands that made you sing

Everything you gave without asking in return
How you endured under strain

Now unyielding bonds beyond the linear that reach where you are

The great circle
A return to star dust, return to mother

Your embrace I still sense

The souls you lost you never forgot, holding you now

And your spirit finally emancipated

Your light burned too fast but it burned the brightest