Sunday, November 29, 2015

Month of Gratitude, Week Four: Resilience

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?

Sunday, November 22, 2015

Month of Gratitude, Week 3: Little Things

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. 

Thursday, November 12, 2015

Month of Gratitude, Week Two: That One Thing

Man this is going to be an emotional post.

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

Sunday, November 8, 2015

Month of Gratitude, Week One: Satisfaction

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. 


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"