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.

The No-Win Scenarios of Illness

I’ve been thinking about no-win scenarios quite a bit over the last few years because illness is starting to feel like one. I’m starting to think that I am living in my very own Kobayashi Maru simulator.

*It’s going to get nerdy for a second* In the Star Trek universe, the Kobayashi Maru is a simulated test for Starfleet cadets. They are presented with a scenario that is rigged to cause destruction and loss of life no matter what choice is made, and the cadet's response to the test demonstrates their character and leadership skills. The conditions of the test ensure no can “win” it.

My last few appointments really solidified this for me.

Going to Stanford two weeks ago included a lovely stay at our favorite hotel in Palo Alto that was a serious splurge (but so worth it) and a very anti-climactic appointment. I had been waiting to see my neurologist for a year, and in that time I had to leave my dream job, stop driving, and I rarely leave my house. I went through more testing than I can remember in a year, on top of all the testing of the last 5 years. I had to start using a wheelchair, which I must say I’m finally getting pretty good at using. So much has changed. Appointments with him are usually about an hour, but I only got 20 minutes with him because he was running behind.

He explained that although the signs may point to Myasthenia Gravis, none of my test results can solidly confirm it, and he said we have to be absolutely sure because my treatment options going forward if that is the diagnosis “will not be good.” They can cause as much harm as they can help. Woo hoo! 

I have to do a CT scan of my thymus and then potentially have surgery to have it removed. Sometimes Myasthenia can be caused by an enlarged thymus or benign tumors on the thymus. A scan will show if it is causing trouble for me.

Other treatments for MG are immunosuppressants like Prednisone, which are known colloquially as “magic poison” for a reason, IVIG, or plasmapharesis. A constant dose of Prednisone can cause long-term damage and lead to other problems, but many people with autoimmune diseases rely on it. IVIG can also cause other problems. My new local neurologist who I saw last week explained all of these options are “multiple steps up from taking medication and dealing with side effects. We have to be sure.”

I already knew about these treatment options for some time. After I saw the note that said “serological Myasthenia Gravis” on my bloodwork a year ago, I have done a lot of research since then. I had never even heard of MG before that or even knew what a thymus was until a year ago. It’s amazing the things you learn through this process. 

I also learned that the medications I’ve been taking for MG and POTS contradict. I’ve been taking Mestinon for about 8 months, which is typically used to treat MG, and it has been a life saver.  It has made such a huge difference. However, it aggravates some of my POTS symptoms so I’ve had to take a minuscule dose and work my way up to a regular dose. The Florinef I’ve been on for 3 years is contraindicated for MG because it causes muscle weakness and is likely contributing to my breathing problems, which explains why I have never ever felt good on it. My attempts to get off of it have been unsuccessful but I have to keep trying.

I guess this is the thing with comorbidity: medicine is not an exact science and your conditions can conflict, each trying to prove their alpha status and dominance. So if I get the Myasthenia diagnosis I feel screwed with the treatment options. If I don’t, I continue to be exiled in the grey haze outside of the nirvana of diagnosable conditions, still waiting for a tangible label.

In the bigger picture, I’ve had to slowly accept that these conditions are likely lifelong and now it’s time to figure out what the way forward will look like.

It always feels like every ounce of progress that is made must come with some sort of setback or hardship, like the game is rigged for an unwinnable victory. Yet, I believe “defeat” and “success” are not absolute terms. They can be self-defined inside and outside of the parameters of this chronic illness game. I believe we are masters of our own destiny despite whatever external forces try to push and pull us from our trajectory. 

So if I really am in a Kobayashi Maru simulator, I need to figure out some cheat codes to either cope with these seemingly unwinnable scenarios or hope that someone accidentally steps over the plug and I go back to my normal life.

Stay with me on this metaphor. Recognizing that illness is like a no-win simulator is not a matter of resignation—it is a hail Mary, hard-fought, grit-filled realization that acceptance is the only way forward. It is the courage in realizing that you may not win the war but you won’t give up the battle, no matter how ugly it will get in the trenches. But it doesn’t have to be a no-win scenario. You have to find other ways to “win.”

You can change the game, change the rules, change perspective. Dig deep and find your inner James T. Kirk and change the conditions of the game and get away with it on pure charisma and bad-assery.

You have to find your own cheat codes. Even if we can’t rid our bodies of illness, we do have the power to change our perspectives. These are some “cheat codes” I’ve come up with, things I think of or try to remember while fighting what seems like a no-win battle.
*You can find a printable version here

     1.   In the dark depths of a bad day or a bad week(s), try to remember that they serve to punctuate the sweetness of the ok days and even the once in a blue moon great days

     2.   Remember what you do have control over in terms of your illness and your life, whether it be your diet, your routine, your exercise efforts, your attitude, your will to keep going, your passions

     3.  The hard times and dark periods are like battle medals: you fought hard to win them. You survived this long, so you can survive whatever may come

     4.   You can live in denial that leads to endless frustration, or you can live with acceptance and find a path forward for the best life possible. This one took me a long time to really learn

     5.   The past and future barely matter. The present is really the only reality that matters. Live the fullest life you can in just this moment. 

     6.   You are the ultimate decider when it comes to how you handle and treat your condition. I really believe that we still have choices, even when it comes to medical treatment. Your intuition is an asset. Hold onto your voice because you are not powerless

     7.    Even if you have a tenuous relationship with hope and you and hope part ways for a brief time, hope will always be there waiting for you to return when you need it most

     8.   You have a story to tell that matters. Never surrender it

     9.   You play this game long enough, you get even better at it

    10.  Success and victory can be self-defined. The conditions of the game may constantly change and continue to seem insurmountable, but you can adapt and “win” each day on your own terms

Bonus: Chocolate is a great listener 

Keep up the good fight no matter what obstacles are placed in front of you. Cheat if you have to. We got this. 

Getting Around the Hard Things

Stephen Hawking is one of my heroes and I'm trying to live by these words. Last week was rough. All the hard things coalesced into a perfect storm, but I’m navigating it. Things seem to change with my mother’s health every day. I’m working on my disability appeal because my claim was denied (they determined I’m not technically “disabled”). I had to resign from my dream job. 

When I was diagnosed with Dysautonomia in 2012 and I started to look out into the ether to see how others coped and lived with it, I came across a lot of stories of people who had to leave their jobs and careers. I’m a workaholic through and through. I thought “no way. That won’t happen to me. There’s no way.” When I left the PhD program in 2011, I didn’t work for a year, but eventually when I finally got a diagnosis and treatment, I was able to go back to teaching. It was challenging to say the least, and I had to adapt everything I knew to make it work. I had varying levels of success. I’d have to go on medical leave usually every other semester because I had pushed myself too far, but I still anticipated having a long career. I knew things would keep improving, or I was at least convincing myself of that.

When a full time, tenure-track position appeared at the college where I was teaching, my husband and I debated whether the timing was right to apply. Getting a tenure-track position is a bit like winning the lottery in academia, especially if you transition from teaching part time. Only a tiny percentage of people finally make the transition, usually after working part time for many many years. My dream for the last 10 years was to teach full time at a community college. It’s the reason I made the crazy decision to get a PhD. I handed in my carefully prepared application and the next day had to go on medical leave for two weeks in spring 2013. This is when I started having trouble walking and breathing—issues I thought were related to pushing myself too hard and would resolve quickly.

Right before they announced interviews, my husband and I decided I would rescind my application. Then, I found out I got an interview; I could not bring myself to do it. I could not walk away from this chance to achieve one of my goals. I went through the process and somehow, some way, somewhere, actually got the position. I had totally just achieved one of my biggest dreams. No big deal. One of my friends who I went to grad school and worked as an adjunct with for years told me "you made it! you're the first one out of all of us to make it."

We were financially stable for the first time, and we started making plans for the future. But it wasn’t meant to be. My struggle to be able to teach full time is documented in detail on this blog so I won’t go into it. Yet, I have absolutely no regrets. I loved the time I had. It was my dream job, I was fulfilled, and I saw myself there until I reached retirement age. I loved the people and students I worked with, and I felt like I was making an imprint on the college, despite my health struggles every day. There’s something deeply satisfying about going from being an adjunct and using your car as your office to getting an entire office to yourself. I decorated it with Harry Potter nerdom and pictures of Yosemite. Only in academia can you really let your freak flag fly and legitimize your eccentricities by turning them into “research.”

I don’t know what’s next. I would love to be able to teach in some capacity again in the future but I really don’t know what will be possible. I can't even wrap my brain around working because I'm focused on being able to breathe, drive again, use my wheelchair less often, reclaim some of my independence, and leave the house successfully and regularly again. These are my goals right now.

My job title right now is “couch barnacle.” I’m a recovering workaholic who spends most of her days sitting. Our culture grooms us to equate success with money, and our identities become so entangled in our careers. It can be so difficult to disentangle your self-worth from these trappings of “success.” When that is ripped from you, it is challenging to not feel an overwhelming sense of failure. It takes some serious mental effort to work through that conditioning. Thank god I have a great therapist I’ve been working with for years now to help with that.

This story is not uncommon. I still read so many stories of people who lose their careers, have to leave college, or lose relationships because of illness. I’ve met people who have lost absolutely everything, but life goes on. Life presses on somehow despite how irrevocably everything can change in an instant. I’ve talked to many people who rebuilt their lives from the ashes and found happiness. They are truly inspiring. You can’t reclaim the old life. You have to make something new.

It’s difficult to avoid letting your worldview be dipped in a pervasive coating of bitterness when you lose so much to illness. It’s a constant struggle to avoid this and look at everyone around me who can work, drive, travel, do whatever they want without bitterness and envy. It can take root in your soul and it could take years to weed it out. I’m a die-hard pessimist but I have really learned how to value what I do have and redefine success on my own terms. These days, if I can vacuum our house or exercise for a few minutes I feel like I’ve earned 10 gold stars and handfuls of chocolate. That’s success for me right now.

My dream now is to live a life where I don’t constantly set myself up for failure and I live within my physical limitations and feel satisfied. That’s really all I want from life.

These are very hard things, but I honestly would not trade the wisdom I have attained over the last few years. I feel like a better person than I was a few years ago. My spirit feels stronger now than it has in years. 

Most of the time, I look at my life and I feel blessed and lucky. I have an amazing husband who is my best friend, my caregiver, and the love of my life. I still get to see friends and family sometimes. I have people I can rely on. I get to sit out in our yard with my cats and drink tea and read most days. Who could want more than that? I still have my passions that I have neglected for too long: music, painting, reading, writing. Terrifically blessed. It will take some time to really process and recover from this but time is something I have.

Despite having to resign from my job, the week had some bright spots. I had an appointment at Stanford with my neurologist’s Nurse Practitioner. I discussed how terrible my last visit at Stanford was and that I do not always feel like I have their support. Going there is often a crapshoot it seems. But this appointment was great. She took my symptoms seriously, and before we left she told me “I’m pulling for you.” I left there feeling like I had support and some hope. The medication I started a few months ago, Mestinon, is really helping my breathing and fatigue issues and they want me to start taking more. She gave me some recent research about POTS and exercise which I will share on this blog once I get through it.

Got my #hospitalglam on while I was at Stanford. Blue compression stockings. Purple cane. Jaunty butterfly scarf

I also saw a Pulmonologist last week. She was kind and thorough and she believes my breathing problems may be related to muscle weakness, a common symptom of Myasthenia. I have another lung function test next week that will give more information. While I was there, she had me try a brief test to see if I had asthma. I had to breathe into a machine that looked like an old Gameboy with a picture of a cloud on it. My husband does a hilarious impersonation of the sounds the cloud made. I wish I had that machine to bring out at parties. No asthma but she explained I will probably get a machine to help me breathe at night but hopefully I won't have to use it during the day too. I don't want to be part robot during the day time as well.

I’m thankful these appointments were uplifting. I needed a win.

Now I go back to my normal life of being a couch barnacle, watching videos of live concerts and documentaries about prehistory on YouTube, being aggravated by American politics, and worried about the state of the world. I want to start thinking seriously about writing my book, finishing recording my album, and getting back to participating in the world again. 

With a hope that keeps burning on an altar of faith and perseverance, unrelenting and determined to burn even brighter some day

The Invisible Decline

I am working on other posts, especially ones that I think are helpful. I’ll start one and then abandon it. I guess I need to honestly discuss what I’m living. I don’t want to talk about this but I think I need to get it off my chest before I can move on—this is real. This is true. This is now.

I’m living the invisible decline. I was hoping when I left work that things would plateau a bit or I could at least regain some sort of control, but I’m still learning that control is an illusion. I have always thought since this thing started a few years ago that things would eventually improve. Many of those with chronic illness live with this hope despite declining. I want to pretend that everything is ok all of the time and be a rock star and just go with it.

I see friends, family, acquaintances, doctors, people, and I look the same to them. I look like the same person I was three months or a year ago, but I’m not. I continue to decline—decline with no real explanation. The things I could do just two months ago, I can’t right now. I’m still hoping to reclaim them and am continuing to work hard to do so. My symptoms continue to worsen. The bright spot is the medication I recently started is abating some of it and physical therapy is giving me some strength back. I still have hope that my doctors can make more sense of this puzzle.

I’m grieving and I’m adapting and it’s a slow, painful process to live through. But the decline isn’t completely invisible. If I leave the house, I need the wheelchair almost all of the time. My energy only lasts in short bursts and then I crash very hard and don’t recover for hours. I at least have cats who are willing to snuggle during that recovery time and a husband who never questions what I am experiencing.

I had a wonderful, beautiful Thanksgiving with my family last week that I am immensely thankful for. That day was a real gift. At 8:30 I hit a wall really hard and my sister said, “When I got here you looked good, now you look completely different.” It wasn't invisible. I peeled myself off the couch and my husband drove us home. I feel so much gratitude about making it that long and getting to really enjoy that time.

I don’t always feel sad about this invisible decline. A lot of the time, I’m just trying to adapt to it. I wasted a lot of energy the last year or so fighting it. I don’t have the energy now and maybe that’s a good thing. Honestly, I'm feeling more content with life than I have in a long time because I'm learning how to accept and adapt.

A few weeks ago, I wrote this is in my journal as I way to try to cope. It’s mental dumping to just say what I need to say about it so I can analyze it more clearly. This is the harsh reality of living the invisible decline. I know there are many Spoonies out there in the world who also are living it. So many of them out there. I've heard their voices and joined their struggle. The sense of powerlessness can be overwhelming, but take comfort that all of us, every living thing on this earth is powerless in some sense, and that’s ok. We don't have to succumb to it. Powerlessness doesn't have to define you. I hope these words find you well.

Sinking. Like I’m sinking into quicksand and I’ve lost the strength to pull myself out. Every time I try to adapt to what I’m able to do, the peg moves lower.  Is this life now? Sometimes if I look into the future, it will swallow me whole. I can’t think about it. I can only adapt to each moment. The decline feels like some sort of moral failure. What am I doing wrong? Am I not doing enough? I push myself so hard every day to try to reclaim my treasure, always searching for what I’ve lost but it’s left no trace. No crumbs to follow. Like a weight is tied to my shoulders and I’ve been thrown overboard. My markers of identity have been washed away in a sea of illness. My achievements, my titles, my earnings. Let the tide just pull me in. Wash over me. Let the strings of the universal design pull and guide me. Because I can’t fight it anymore. There’s a new path somewhere. If I hold on. Just hold on.

Feel this tug in the back of my navel. But that’s not what it is. The darkness wants to subsume me. But that’s not what it is. This is grieving, growing pains, and the phoenix rising from the ashes into something new. Something transformed. Sometimes the choice is made for you and you have to make your life into the shape of something new. I’m still pondering that shape, or the universe is pondering it for me. It’s an exchange, a collaboration. The darkness stares back at me, always trying to win. Always trying to cheat me and lie, make me believe it’s too much. That there is no winning. The darkness can win sometimes but not all the time.

I have faith. Such faith because I’ve seen the darkness many times and made it to the other side, sailed a ship straight through it to a serene shore.

I’ll wake up tomorrow. Open my eyes and let the day take me where it will. I will feel gratitude for everything I have and everything I’ve been given. I’m free to accept that this is what’s happening to me. This is what life is. We continue, beating on, against the currents. There is strength and power in this.

I’m figuring out what this path is. What is the journey that lies ahead. Keep listening to the messages of the universe and they will plot a course. Find a way.

And hold it. Hold fast to it.