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. 

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. 

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"

Pushing Against the Current

A bit beat down.

That’s how I have felt for the last few months. Just kind of beat down. Pushing against a rising current.

Sometimes I can swim that current. Sometimes I just have to let it take over.

I haven’t been sleeping or breathing very well, and they both work together to exacerbate the other. I'm always having difficulty breathing but it has been much worse over the last month. I continually wake up in the middle of the night not breathing and then struggle to breathe all day. My medication, my inhaler, and my canned oxygen only do so much right now. I consider it really annoying that breathing is such an essential function. Is there a comment card somewhere I can submit so I can complain about this? 

All the oxygen in the world couldn't put her back together again...

Monday was one of the worst days in some time. I was desperately struggling to breathe and should’ve gone to the ER. But I didn’t. I always say “next time. I swear next time I’ll go. Today I don’t have the fight in me to battle with doctors at the ER or sit in a waiting room for hours.” Next time. The problem with Myasthenia is that you can go into crisis and stop breathing suddenly. The condition can become fatal then. I tried to push through and by evening I was doing a little better. Thank god for Mestinon. I see my pulmonologist next week so maybe she'll have some ideas. Full body transplant? 

I’ve also had some disappointments the last few weeks, but I’m working on rising above them. I have mentioned that I have put an immense amount of energy working on my long-term and short-term disability applications over the last year: gathering medical documentation, sifting through them, making copies, organizing notes, requesting more documentation, making phone calls. My short-term disability was denied in January and I am waiting to hear the results of my appeal right now. My long-term disability was denied two weeks ago.

I was denied based on a “pre-existing condition” because I stopped working within a year of when my insurance policy started (I had to pay into a private system as an educator). As a lowly adjunct, I never paid into any type of disability before that. I wasn’t denied because of medical necessity; I was denied based on a bureaucratic caveat.

I missed the cut off for the pre-existing denial by a few days. If I had been able to hold on at work for just a few more days, I would have been eligible. But that was an impossibility. I held on longer than humanly possible. I tried every loophole with the insurance company and battled the best that I could, but I don’t see a way around it.

Luckily, husband and I have worked some financial wizardry (which unfortunately included him selling his beloved truck) and we can survive on his income. We can make it in a future that will likely include me being unable to work for a long time, possibly indefinitely. It’s a relief.

I can’t rage against the injustice of the “pre-existing” condition nonsense because there are too many people who have also fallen in the cracks and who must struggle because of an inadequate system. I count my husband and I as incredibly lucky compared to some of the stories I have read.

I saw a woman post a picture of her empty refrigerator a few weeks ago. She is waiting for her disability hearing (which can take 12-18 months), and it was the end of the month so she was waiting for her food stamp money. In a Dysautonomia group I am in, I saw a young woman ask “what essentials do I need to survive? I will be homeless in a few days.” She didn’t have any family to rely on and was too sick to be able to work. I see people who are treated like frauds and criminals before they finally get their disability benefits. It can take many years to finally get them. How exactly is anyone supposed to maintain their health or live under those conditions? I could go on and on. 

I don’t know where I’d be without my husband. I wish I could do something to help all of these people who must suffer because they are sick and lost the genetic lottery. It’s heartbreaking. I dream of starting a non-profit that works to support people who have fallen in the cracks. Or winning the lottery and building a commune for all the Spoonies out there who need a home. I like this dream. The commune would also be filled with cats from shelters who need homes. So many cats.

I also got the results of my thymus scan.

Normal. No surgery and I perhaps lose my best possible chance of remission. I may be the only person crazy enough to look forward to the prospect of surgery. My neurologist told me he really expected there would be a problem with my thymus. I tried not to get my hopes up but I thought my trusty thymus might be my ticket for some real answers finally.

This may provoke cognitive dissonance but normal results come with heartache. Once again, you have to hear “everything is normal. Nothing is wrong.” And the subtext I always hear in this is “you’re just crazy and imagining it.” This probably comes from years of being told I was wrong by doctors. I haven’t heard those exact words in awhile but I’m always waiting for them to resurface. I fear that I am going to make a full circle and after all these years, I will just end up back at the dead end of “you’re imagining this.”

Perhaps the tools for really identifying what is wrong may not exist yet, and this is true for so many diseases. When you have lived on the outer edges of Western medicine and turn to stare into the impenetrable abyss of the unknown, you appreciate the limits and hubris of human intuition. We do not know everything.

So I’ve been failing at pushing against the currents of hopelessness of late. It’s been too hot to sit outside, so I’ve been trapped inside, which is not helping. Usually I can sit outside in our little yard that is my oasis. I have two blue jays who have made a home there, a few butterflies, my flowers that can survive the heat. I sit out there, listen to my neighbor’s scream-talking, listen to the great live Mariachi music from the house down the street, and I feel at peace with the world. I just have to hunker down and ride out summer.  

A little patch of heaven 

I know that I’ll get the strength to push against the current again.

I can already feel it building.

In the haze of hopelessness, you reach out a hand into the fog

Hoping for a corporeal grasp, a lift up

Calling for a response

Sometimes only despair is waiting

The current picks up your disparate limbs, a body in pieces, and drags you in its weighted storm

Until

The ground hurdles from under you

You land, bewildered and blinking

You stand up and stare into a world that suddenly has dimension and shape again

But you see the fog in the distance, gathering motion to consume everything once more

Then music. Sound. Booming, glittering life

Make it as loud as possible to drown out the fear

Dance like the fog will never take you again

In a body strengthened in persistence

These are obstacles, riddles to solve, barriers to challenge. I’ve climbed over many before so I know I will again.

I believe sometimes obstacles are there to challenge your will and your warrior spirit; they make you dig deep to see how hard you will fight to climb over them. And sometimes when they are insurmountable, you recognize their immutable weight and just walk around them, waiting for a time when you have more strength to climb over them.

But you never give up. That—at the very least—is non-negotiable.

You press on. Pushing against the current the best you can. Tomorrow is another day and today is worth the fight to make it there.

In the meantime, I'm going to crank up Stevie Wonder, drink my electrolytes, and dance from my couch. Waiting for a lift up.