I don’t have much to say this week. I hope that all
of you reading this had a good holiday if you celebrated Thanksgiving, and if
you didn’t, I hope you had a good week in general.
I've been physically in pretty bad shape still, but I got to enjoy the holiday. I anticipated it being more
difficult since this was the first holiday without my mother. It was definitely
difficult but my family and I managed to still celebrate and enjoy our time
together. It definitely won’t ever be the same. My mom was my ally in the
family; she was the only one as weird as me. We had the same humor. She was the person who loved me the most in this world. She was my best friend. Now it feels like a piece of my
soul is irrevocably gone. But it’s ok.
The thing with surviving something
traumatic and devastating is you think you can’t survive it. And then somehow
you do. You put one foot in front of the other and just keep going.
I can survive it. I can keep going. I’ve built up a
pretty strong reserve of resilience the last few years.
That’s what I’m thankful for this week: resilience.
Before I got ill, I was a survivor but I don’t think I was very resilient. It’s
taken years and quite a bit of training to learn resilience. You have to with
illness or you’d never be able to get out of bed every day.
Resilience means hope
It means acceptance
It means survival
It means renewal And renewal is a promise for a better day
I’m not consciously feeling resilient right now but
I know it’s there. I know it’s my life support that is keeping me going. It’s
giving me strength unconsciously.
I’m grateful for that strength to enjoy every bit of life right now: spending energy on creativity, seeing my friends, watching their
children get older, spending time with my family, eating pumpkin pie, watching
Star Trek with husband, going outside, relishing that first note when I play a song, breathing in chilly autumn days, drinking a good, strong cup of tea.
Every bit of it.
I hope you had moments to savor this week too, and whatever battle you are fighting, that your resilience is sailing you to the other side as well.
Outside to walk a few feet with my trekking poles. Who could ask for more?
I’ve been trying to come up with a focal point for
this week’s post about gratitude, but the only I can really think of is being
thankful for being alive and appreciating the little things right now.
My heart is very heavy after the attacks in Paris,
my body is exhausted from a string of appointments, and I’m still in throes of
grief. One of my best friends just lost her mother this
week as well, and I’ve known her family for 20 years. I’m just trying to take a
step back and feel some gratitude that despite the physical and emotional
wounds we have all acquired, we survived them, and in that survival there is
solidarity—a collective spirit that life must press on.
I was so weepy this week that I’ve reached new levels of absurdity. I was watching that video of Fred
Astaire and Ginger Rogers dancing to “Uptown Funk” that’s been circulating
everywhere and I started crying a few seconds in. I dare anyone to watch it and
find a reason to cry. I at least had a good laugh about the absurdity of it.
Even though my body wasn’t able to exercise much
this week, I still went for my daily walk almost every day. It’s been a bit
warm this week but I’m loving the hazy autumn days. I'm always grateful each day when I am able to get outside just for a few minutes. On bedridden days, I dream of taking my short walk.
One of the trees next to my house has gone full autumn
It’s supposed to get colder next week and dip under
freezing temperatures. That doesn’t happen much in these parts because we live
in varying stages of living at the center of the sun most of the time, so I’m very much looking
forward to that cold. I love the cold. I prefer the cold.
Thanksgiving is next week and it’s going to be a
really rough one. I’d say Thanksgiving and Halloween are my favorite holidays
and my mom and I always watched the Thanksgiving Day Parade and the dog show
that follows together. I’m not sure I’ll watch it this year, but if I do the
sight of the inflatable Snoopy or Minions floating down the parade route will leave me in tears. I'll be laughing at the same time.
The rest of the year is going to be packed with
gatherings, including my husband’s birthday. He is having a birthday party for
the first time in years and I’m very much looking forward to it. His birthday
is at the beginning of December and when I was teaching or in grad school that
was always the busiest time of year for me so his birthday celebrations have
been unfortunately minimal in the past. I hope we can make up for it this year.
Our four year old nephew’s birthday is the day before my husband’s so I kept
telling him he should have a dinosaur –themed co-birthday party. Maybe next
year.
Then we’ll have our annual NYE gathering at my
parent’s house and since my step-father is moving out of state, this will be
the last one there. I’m terribly sad about all of it but I’m trying to remind
myself to enjoy these moments since everything has changed and will continue to
change.
That’s the strange thing about life. You think that
everything will just somehow continue as it has been. That the march of time
will somehow leave the details of life, the simple things we take for granted,
untouched. But that’s not how it works.
I’ve been re-learning Christmas music to play at the
assisted care facility where my mom was, and it’s been probably a decade since
I’ve learned more than just a few songs this time of year. It’s given me a reason to practice with purpose and I’ve
been playing every day. I’m very much looking forward to playing music for them and sharing some joy. They are a great audience and deserve some joy. I even sang an entire verse of a song this week, which
is an improvement over what I have been able to do. I hope that’s a sign I can
someday make it through an entire song.
This is what I save my spoons for
I hope you also had some little things that made you
feel gratitude this week. We could all use some joy in whatever form we can
find.
Like I mentioned last week, I am writing one post a
week this month about gratitude, specifically how illness has taught me to feel more
gratitude.
As illness peels away layers of identity and you’re
left with just the essential, you are able to see the very center of your happiness and what feeds it. I hope you have one thing, more than anything else in your life, that illness or pain has
not taken from you and brings you the most joy in life.
My one thing is music. Aside from rap and modern
country, I like most music genres (even those two I listen to occasionally).
Jazz is my home but I also love classic rock, world music, alternative, blues. I
have probably mentioned before that I’m a musician/songwriter and have been for
a good portion of my life. If I could choose just one profession in life, I’d
be a performing songwriter. Although I was rarely paid for it, I did get to
live that dream. I haven’t talked about music much because it’s one of the most painful aspects of illness for me. I haven’t been able to perform in about a
year and a half, and because of my breathing problems, I had to stop singing a
year ago. It feels like I have literally lost
my voice.
But this wasn’t always the case. My whole life I
begged my mother to let me take piano lessons. Most kids are forced to take
them, but I wanted them desperately. She couldn’t afford to pay for lessons, so my
first year in college I made enough at my job to pay for lessons myself. I took
lessons for about two years. My piano teacher would often put classical music
in front of me but she humored my love of jazz and my need to improvise.
Although I didn’t take lessons for long, she taught me how to create
arrangements and improvise. She used to tell me, as I was playing something from
a piano book or something classical, “you don’t have to swing everything.” The
rhythm of my heart is jazz swing. Even now when I find myself trying to swing some music that doesn't need it, I think of her teasing me and I laugh.
When I was a teenager, my best friend used to live out in the country and I would use the time I spent picking her up to sing in my car. When one of my
acquaintances during that first year in college started a band, I went out on a
limb and asked if I they needed a vocalist. I had not really ever sang in front of anyone before, but I wanted to be musician, even if I had to pretend. I was in a band for about a year,
and it was fun learning how to build a song with a group of people, but my
bandmates had no desire to perform. We had different goals. The band disbanded
and my friend and I started a duo together. We wrote a bunch of songs and would
perform in coffee shops. We’d throw in a few Nirvana and Tori Amos covers since
we were children of the 90s. We only performed a few times so I
decided to take my nascent piano skills and start performing solo. Those first
few shows must have been painful to watch. If I heard a recording of them now I
would cringe. But I was determined.
A year or so after I started going solo, another acquaintance
organized a show at a local renovated old theater. He made me the headliner.
That was the first time I ever played for a live audience. I was only the half
the musician then that I am now, but it is still one of my favorite memories.
There’s nothing quite like sharing your passion with others and getting an
instant response. I got great feedback and I pressed on with my dream.
I played in coffee shops, bars, restaurants,
weddings, and even a flower shop that had a piano. I got to play for live
audiences again when I did musical interludes for my college’s performance of
The Vagina Monologues. One of my best friends is an obscenely talented
keyboardist and we decided to join forces a few years ago. We started doing a lot
of shows and it became a reason for all of our friends and family to gather.
Those are still some of my favorite memories. Our last show was July 2014.
One of my favorite memories is when years ago I
contacted one of my favorite artists Janis Ian, the consummate
singer-songwriter. We corresponded through email a few times, and I asked her
for any pointers she had to share. She told me that in her 60s she felt
that she was just finally getting her stride with performing. I was planning on
recording one of her songs and had hoped to include it on a cd I wanted to sell so
I asked her about royalties. She responded that she didn’t own the song but
wished me the best of luck and asked if I’d send it to her. I did record it but
never sent it to her. That was almost 10 years ago. I suppose I should send it
to her someday. (You can find the song, “The Come On,” on my soundcloud page). I
don’t have those emails anymore but I wish I had saved them, if only to
convince myself it wasn’t just a dream.
I didn’t play much while I was an academic and when
I was teaching. I wish I had set aside more energy for it. I assumed, as so
many of us do, that nothing would change. That I would be able to play music in
the same way for the rest of my life. I was wrong.
When I got ill in 2011 and had to leave my PhD
program, music was my solace. I wrote a few songs during that time that I’ve
never performed or recorded, but hopefully will someday. I played a private gig
for about 10 of my good friends in the program before I left as a goodbye gift. I had lost
about 20 lbs and was very ill, but I powered through for them and I think they
appreciated it.
After we moved back, my friend and I did a few shows
together, but every single one I had pushed myself too hard to practice and I was
in very bad shape on the day we played. That last show we did, I should've spent the day in bed but I'm glad I pushed myself to do it. I left each one feeling tremendously disappointed I couldn’t
be the performer I used to be. Yet, I look back now and feel thankful for those
shows. My mom was at most of them. Every time we played, I always tried to
throw in a song just for her. I played Fleetwood Mac’s “Crystal,” one of her
favorite songs she introduced to me, at one of our last shows in 2014. She was
not well but I watched her sing along with me as I played it.
Now that so many things have been stripped away from
my life, I can see clearly what I valued the most, what is integral to my
identity. That is music and performing. I could accept never teaching again or
having to use a wheelchair for the rest of my life, but playing music is
non-negotiable. That will not be taken from me. That is the one thing that is
mine still that gives me the most joy.
I still play my keyboard most days and still try to
sing. I can get through about half a song before the respiratory weakness kicks
in. I don’t have the power in my voice I
used to have and I don’t know if I’ll ever get it back. But that’s ok. I live
on a quieter frequency now anyway.
When my mother was in the hospital and then hospice last month,
I lost music briefly. Playing music and listening to any of my favorite
artists/bands brought me no joy. But in the last few weeks, I’ve been listening
to the playlist I made for her and playing my keyboard again and it is once
again a source of solace. I played the piano at the assisted care facility
where my mother was while she was in hospice. On that last day when we were all
there to say goodbye, I played for about a half an hour and many of
the residents gathered around the piano. One man who was in a wheelchair would
clap along to every song. Although he was hunched over and had difficulty
talking, he had an impeccable sense of time. I adjusted the time signature for
each song to match his clapping. Right now, I'm trying to re-learn some Christmas
music to play for them next month. I’m hoping to go back there soon.
I am going to get back to singing and I am going to
perform again. Whatever that looks like, it will happen. I have a collection of songs
that I’m ready to record and turn into an album, and that will happen. Illness
has been a gift in that it has shown me that music was ultimately my greatest
passion in life and it’s also inspired many songs I've written. I was able to record
one last year, “Upright,” which you can also find on my soundcloud page and on the bottom of this post. Illness has given me a new sense of purpose and drive to play music as often as possible.
I didn’t mean to divulge so much and miss the point
here. I guess I needed to look back and celebrate these memories I still have. The
point is I hope that you also have one passion or joy that brings you the most
pleasure and no matter what setbacks you’ve experienced that you are able to
return to it again and again. That it is never taken from you. That it is your
greatest solace.
I would’ve continued to take this passion for
granted if illness hadn’t let me see it for what it was.
No matter what, I still
have all of those memories. As I talked in my last post about learning how to feel satisfied, I feel satisfied that I can still play, even if it’s not the
way I ultimately want to. I still have it. It’s still there for me, and nothing
can wash away what music has given me.
My wish for you is that whatever your greatest
passion is, whatever that one thing is, that you can hold fast to it and enjoy it for as long as you can.
Never surrender it. Make time for it. Celebrate its role in your life and your
identity.
And then, more than anything, share that one thing with others.
*Special thanks to Carrie Anne for all the great pictures over the years
As it is the month for gratitude, I am going to
write at least one post a week this month discussing illness and gratitude. Although illness has
taken many important things from me, there are many gifts it has given in
return. One of the most important lessons illness has given me is to learn how
to be satisfied and gracious in that satisfaction.
Dissatisfaction is a state of being for many of us,
and it can be a valuable tool to help us achieve goals. I lived most of my life
always thinking, literally, “what’s next?” I wouldn’t have been able to go to
grad school twice, achieve my goal of getting a tenure-track professor
position, climb mountains, or power through illness like a warrior the last few
years if I didn’t know how to channel “what’s next?” into achieving goals.
Yet, this “what’s next?” also pushed me to make
choices that weren’t good for my health and, more importantly, it blinded me to
the immeasurable gifts I already had in my life. If I have one regret since
getting ill it is that I took too much for granted and didn’t appreciate what I
once had that is now gone. “What’s next” was a distraction from being mindfully
present and allowing myself to surrender to satisfaction, to look around me and
feel grateful for my life.
We are trained from a very young age to never be
satisfied. We are conditioned to become consumers from the moment we are born
and to look for “bigger and better.” Satisfaction, in American culture
especially, is a truly radical idea. Everywhere we turn, we are constantly persuaded to want more and to be more. “Bigger and better” and “what’s next” are
illusions; they create desires that can never be quenched.
Yet, as the speed in which my world spins has slackened,
as the alacrity of my own body has dampened and my legs—once athletic and
invincible—stumble along at a glacial pace now, I am now still much of the
time. It has helped my mind be still as well. In moments that are thick with
suffering when I’m lying in bed and surviving moment to moment, I am forced to
live in the present. The pace of my world has significantly decelerated, but the
images of life are no longer blurred in speed. They have color, texture, definition.
It seems ironic that illness would give me this
lesson. If we are often told “your health is the most important aspect of life,” then you
would think living with a life-limiting illness would be the most
unsatisfactory state of being. Yet, “your health is the most important thing”
is a platitude; it assumes that those of us who live with chronic illness have
nothing because we don’t have “our health.” This is fundamentally false. The loss
of my health and my independence has taught me to value what I still have and despite being ill I can still enjoy what I still have.
It has taught me that there are moments to savor in
life. There are moments when all of the ingredients of life—the people in our
lives, the words we say to each other, our perceptions of the world, our
self-image—meld into something truly delectable. These are the moments when we
can feel truly alive, feel the electricity of being human. These moments were
not on my radar before illness—before I was forced to be still and live in the
present. When you live under the spell of “what’s next,” it’s easy for these
moments to pass by.
I try to find moments throughout the day to just
breathe in satisfaction and feel it completely. Feel...
Satisfied with the limitations I have now and what I
can still do
Satisfied with my appearance
Satisfied with spending most of my time at home
Satisfied with each moment I get to be outside and
be part of the world
Satisfied with my relationships
Satisfied with my material possessions
Satisfied with how I physically feel in this moment
right now
Satisfied with my talents and abilities
Satisfied that the present is here but the future is
a mirage
Satisfied with the treatment I have right now
Satisfied with the time I had with my mother
Satisfied with the change I am able to enact in the
world
Satisfied with the energy I can give to others
Satisfied that my condition may get worse or get
better
Satisfied that I may work again or I may not
Satisfied that my place in the world is just as it
should be right now
Feeling satisfied at times doesn't have to stop us from setting goals and seeking improvement in our lives and in the world around us, but it's ok every once in awhile to appreciate and value that what we have is enough. Satisfaction also doesn’t have to be a constant current
and it is by no means a constant sensation for me, but illness has forced me to
look around at the world and appreciate the gift of life. It is an integral part of living with acceptance. In those
delectable moments I can say thank you for the giftedness of life, even if it’s
just for a breath—but I’ll make it a long breath and try to feel an entire
lifetime of satisfaction in that moment.
I hope that you also have moments of pure
satisfaction, moments where you can just stop and say "thank you."
How has illness or any other setback in life helped you feel gratitude? Here's a great TED Talk about gratitude: "It is not happiness that makes us grateful. It's gratefulness that makes us happy"
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.
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:
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
