Friday, July 17, 2015

When Love Prevails

My husband and I celebrated our ninth wedding anniversary at the end of June, which gave me a chance to really reflect on the challenges we’ve faced and the great life we’ve made together. The strength of our love for each other has weathered some serious setbacks over the last few years but I think it has been made stronger by these hardships. We've found a way to value the memories we have and laugh about the absurdities of life. 

Maybe you know my husband. Maybe you don’t. If you do know him in person, you may not know the full story. My husband is goofy, hilarious, sharp-witted, a gifted artist and maker of things. He has an encyclopedic knowledge of animals. He is an athlete as much as he is a nerd and has spent a good portion of his life playing D&D.

He is also the sole breadwinner in our family and has had to assume the role of caregiver as well, and he has done so without complaint. I think the key to marriage is to marry someone who is a better person than you and who in turn makes you a better person. Also, find someone who is as much of a weirdo as you are. I lucked out.

I met him in high school when we had a mutual friend who my husband would draw comics with. When we had art class together senior year, I thought he was one of the most obnoxious human beings I had ever encountered (but pretty cute). He was so effortlessly happy all the time, laughing and finger-painting with his friends. I was an angry person with some serious unresolved issues then and suffering through 8 A.M. art class didn’t help my demeanor.

We had another mutual friend who helped us connect during our first year in college. When we started meeting at a coffee shop to do homework together, I saw that his happy-go-lucky attitude had been tinged with some cynicism and I had started resolving my anger to be a little more at peace with the world. We met somewhere near the middle. We started dating and my husband moved in with me and my parents within a few months. We knew it was life-long from the get go.

We’ve had a few bumpy patches from the beginning, and my health has never been great, but we saw our lives stretched out in endless possibilities. One of our favorite pastimes was to talk about our dreams and goals, make 5 year and 10 year plans. We were broke but we were happy. We spent our 20s hiking, playing video games, spending a lot of time with our family and friends, trash-talking each other during board games. I look back on this time with fondness.  

We've had so many great memories along the way. He took on the role of a roadie as I was performing often and he would carry my equipment wherever I played. We would drive to the foothills on a whim and pay his grandma a surprise visit. We would visit his aunts in southern California and play games and go to the LA zoo. I never realized families were not all dysfunctional until I met his family. They are some of my favorite people. 

My parents took us to Hawai'i twice years ago and snorkeling, boogie boarding, swimming in the ocean together, sitting on the beach with my family are probably some of my favorite memories still.  

We literally climbed mountains together and have put in a lot of miles hiking Yosemite. Halfway through most hikes, I would be struggling and he would offer words of encouragement. Suffering and cursing my body, we’d eventually reach the top together and it always felt like a miracle. The climb down together was the easy part. This continues to be a metaphor for our lives together. Every day is a miracle.

I was in college almost all of the time we’ve been together and working at least one job, nose to the grindstone always. He worked jobs that allowed him time for his hobbies, making sure every day was filled with “good times.” As my friends and I in grad school often lamented that our lives were spent working for nothing 7 days a week, he jokingly would say “life choices.” I didn’t realize he chose the smarter path until I left grad school for good.

He always supported my long-suffering, financially precarious academic habit and even agreed to leave his home and friends and move to Nevada with me so I could do the absolute absurd: try to get a PhD in literature. He was in a motorcycle accident within a few weeks of moving there. His beloved scooter was toast and now he now has a bionic arm from the ordeal, although he suggested to the EMTs in the ambulance that he wanted a hook if he had lost his arm. We often joke that Reno tried to kill us both.

We made a good life for ourselves in Nevada, became liberal gun owners (as one does in Nevada) and would go target shooting in the desert, we watched wild horses roaming in the desert, did some hiking, and saw ourselves potentially staying there for good.

But I guess plans, especially ones that are carefully orchestrated and plotted, are made to be undone.

After I got ill in 2011, all the plans we had made were in question, and I wanted to go home and try to reclaim some sense of normalcy. Once again, he agreed to move back to California despite how much he loved living in Nevada. Our lives since then have been filled with ups and downs, including years where I am working and contributing and years where I’m not.

Every time our plans come crashing down, we gather the pieces and put them back together—creating something new, adjusting to a transformed reality and carving out a way to thrive in it. I would say we have been successful—at least successful on our own terms. We have become professionals at adapting and adjusting on the fly.

I’ve been watching all of The West Wing and am intrigued by the storyline of President Bartlet’s Multiple Sclerosis. In one episode, his MS left him paralyzed and as the First Lady helps him get into in his pants, he looks at her and says, “I guess this is what vows are for.” Indeed. Through sickness and health. Through thick and thin.

We have adjusted. We are adjusting. Although we aren’t able to do many of the things we used to do together, we haven’t lost everything—not by any means. We still have sci fi shows, video games, board games, Led Zeppelin, making art, philosophical debates, and the occasional excursion into nature. We're making new memories with our families, our crazy nephews, our friends who are more like family. We're still a bunch of nerds. 

I often read other's stories who have lost so much because of illness, including the dissolution of what they thought were unbreakable vows. I think we are aware that things could be much worse and I wake up and go to bed every day with a conscious, determined sense of gratitude. As often as I come across stories of dissolution, I find stories of people who found a way to use catastrophe to build stronger bonds. The material realities that we believe determine so much of our lives, our identities, our relationships—I have learned—ultimately mean very little. If nothing else, this is one of the most invaluable lessons illness can provide.

Every time we hit a setback, I am often panicking, worrying, filled with fear. My husband just accepts the setback and figures out a way forward. He is brilliant at finding solutions and fixing things that seem irrevocably broken. My ringtone when he calls is the MacGyver theme song. I may have the degrees but he is the real brains behind the show. While I’m pondering the abstract, he is coordinating the particulars. Somehow we find a way to reach the top of the mountain together.

Most people don’t have to manage these obstacles at this age. Most don’t expect to have to be a caregiver for a spouse in your 30s. And this hasn’t been our only challenge faced too soon. We had to place my mother in a convalescent home earlier this year, far earlier than expected for her age. It often feels like we have lived a lifetime in the span of a few years, but we have weathered these setbacks with our love for each other and with the support of our family and friends. For our tenth anniversary next year, I am hoping we can have a party to celebrate with all of them. We need cake, good food, and great music.

We try to laugh about the absurdity of our lives often. Finding the absurdity in any situation is one our strengths. I told him once "I guess I'm now your trophy wife." He replied, "No. You're my trophy wheels." 

Every relationship will face some kind of test at some point, and every time you get to other side of it together, the narrative of the bond you share widens and deepens. The story of your entwined destinies motions to new hope, new challenges, new utterances of strength. Ultimately, you choose to face what remains still unwritten together, and that, more than anything, is the bravery of love.

Wednesday, July 1, 2015

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
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.