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.

Mindfulness

If you are an adult living in the modern world, you know that stress is a bitch. It’s also an essential, inescapable part of life. Often it is our response to and perception of situations that determines our stress levels. You may think you’ve mastered strategies to tackle stress in life, and then chronic illness throws you a curve ball.

Illness causes an immense amount of chaos in your life. It is an unpredictable beast. The key is managing the stress this causes because stress will aggravate illness. Most patients with Dysautonomia and other illnesses are sensitive to medications so anxiety treatment often needs to be in a non-pill form. We need other strategies to manage the anxiety that comes with illness.

When I got ill and left grad school, I started seeing a therapist who happened to have a background in mindfulness. I am incredibly thankful that our paths crossed and she introduced mindfulness practice into my life. Mindfulness is useful for anyone and especially for those who are ill.

I promise I am not trying to drop some New Age-y nonsense on you or start selling you crystals or ask you to join a yoga cult. This is a simple technique that has given me much relief so I wanted to share it. Mindfulness essentially means training the mind to concentrate on the present by focusing on the breath and the physical body and surroundings. Psychology Today defines it as “a state of active, open attention on the present. When you're mindful, you observe your thoughts and feelings from a distance, without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to experience.” You do not have to be a Buddhist or ascribe to any religion to enjoy the benefits of this practice, but mindfulness and faith can go hand in hand if that works for you. Prayer is essentially a mindfulness practice.

There are many avenues to achieve mindfulness, and it is a practice I have been working on the last few years. Meditation is probably the most obvious form of mindfulness but it isn’t the only form. If you’ve never meditated before, it might be strange to try it for the first time, but it’s easier than you think. There are quite a few free apps you can download to get started. Headspace is a popular one. There’s also Calm.  You can also find videos on Youtube. Search for “guided meditation” or “guided visualization” and see if you find one that sounds beneficial, such as this one. You can also find meditation music on Youtube as well.

What I like about meditation is you can make it your own, such as connecting it to your faith or finding a regimen that works for you. My therapist wanted me to meditate every morning and evening but that can be a tall order so my goal is to meditate at least once a day. I like morning or just before bed the best. The most difficult part may be carving out some time for yourself without interruption.

My routine goes like this: I usually start sitting with legs crossed but I have too much weakness and neck pain to sit for too long so I eventually lie down. I do a 20 count of deep breaths, speaking one word in my head when I exhale, such as “rest” or “calm.” Sometimes I focus on a visualization such as lying on a beach and imagining the tide washing over me and washing away the tension and anxiety with it. Often, I imagine floating among the stars.  I think about the energy of the world around me and the mysteries of the universe. It helps me escape my physical body and feel connected to something larger, especially as often feel isolated from humanity. It’s a chance to feel free of that pesky mind-body dualism. I might speak a mantra in my head such as “I trust my body. I feel strong. I feel connected.” I try to do a minimum of 15 minutes but a half hour would be ideal.

There are also books to help you find your own mindfulness practice. A great place to start is Toni Bernhard’s How To Be Sick: A Buddhist-Inspired GuideFor the Chronically Ill and Their Caregivers. She offers suggestions specifically designed for the chronically ill and she even has POTS as well. I particularly like her suggestions about learning how to be compassionate for yourself and your struggling body and learning how to find joy in others’ joy.

You don’t have to meditate to practice mindfulness. Simple activities we do every day such as cleaning, cooking, reading, writing, drawing, playing music are ultimately mindfulness tasks. They are an opportunity to live in the present moment without thinking about the past or future and just focus on a task or creativity. When I am able to play music and I’m in the middle of a song, I feel truly free. I can let go of the physical symptoms and just ride the wave of the music until the end.

When you realize that these activities are opportunities for mindfulness, you can really embrace them and enjoy those moments, even if they seem mundane. If you can do these tasks despite pain or fatigue, it may be an opportunity to focus on the simple intricacies of the routine and let go of focusing on the physical symptoms for awhile.

I find myself, especially during the difficult times of when I am bedridden or lying ill on my bathroom floor, obsessing about illness and my symptoms. It’s difficult to not feel like the world is crumbling from under me in those moments. Even when I’m just sitting on my couch I can feel my mind start spiraling into anxiety about the future. These are opportunities to take a step back and focus on the present moment. Focus on the breath and stay calm. Mindfulness can train you to do this, but it definitely takes practice. It can alter mental patterns and destructive thinking. 

Sometimes I do the 20 breath count in these moments. If I’m having a difficulty sleeping, I’ll get out of bed and do the 20 count. It stops my brain from spiraling out of control and contributing to physical symptoms. When I was teaching, I tried to do the 20 count between classes just give my brain and body a rest.

Now that I’m not working, I’m trying to get back to meditation and a determined mindfulness practice again. Meditation actually had a benefit I didn’t expect. It gives me boosts of creativity. After meditation, I often feel like I was just given a cosmic hug. 

I hope that this is helpful to you and that you can introduce mindfulness into your life as well. We all know the brutality illness can cause in our lives but it can also open new possibilities and opportunities to know ourselves and feel gratitude for the world around us. Mindfulness could be an option to fulfill these positive aspects of illness.

Here are some related links that might be useful:

"The Power of Concentration": A NYT article about mindfulness and concentration

The Six Benefits of Practicing Mindfulness Outside of Meditation by Toni Bernhard


"All It Takes is 10 Mindful Minutes" Andy Puddincombe's TED Talk about mindfulness

"Mindfulness Meditation Physically Changes the Brain"

"6 Mindfulness Exercises You Can Try Today"