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"

Dreams Deferred, Dreams Discovered

What happens to a dream deferred? Does it disintegrate, never to be replaced?

Sometimes it’s transformed into something new.

About a week ago, it was my one year anniversary of having to stop working and leaving my dream job, a full time professor gig I had worked for many many years to achieve.

It feels like it’s been a few months and a lifetime at the same time. And so much has changed in that time. My condition has declined considerably and my independence has been steadily chipped away. I’ve also learned to make peace with my illness and the world around me in ways I was never able to before. The bad is always tempered with the good.

This is the longest I’ve ever gone without working since I was 15 and the first time I’m not beginning the academic year as a student or a teacher since I was 4. This is brand new territory. If someone had told me five years ago that this is where I would be right now, I would have thought it was pure fiction—the makings of a great book, but not reality.

I’ve been dreading this anniversary. I knew when I saw my friends and former colleagues talking about the beginning of the semester on social media that it would be painful. But the anniversary passed when I was bedridden for weeks so I was distracted by surviving to really be overwhelmed by it. There was an upside to that at least.

I never imagined not being able to work. I never imagined being in this position, but I knew it was a very strong possibility for some time. The health issues started in 2011 and it’s been a decline ever since, and when things really started to change and go downhill in 2013, I knew I was inching closer and closer to this point. I was on an impossible path: working a few months at a time and then having to go on medical leave, over and over. It wasn’t sustainable and I regret taking my health for granted. I always expected to snap back each time I hit the wall and get to where I was before. But each time I hit the wall, I never fully recovered to where I was. Until I hit the wall too many times...

I treat my health as sacred now. My body gives me no other option. I know some of you out there are living this too. I used to avoid reading stories about people who had to stop working. I would see the stories in the health communities I'm in and just skip over them, saying “Nope. There’s no way. There’s no way. That’s not me.”

Perhaps you don’t want to read this because you feel the same. But I want to tell you that you don’t have to be afraid. There is so much that is beyond our control and all we can do is keep up the good fight each day. Do the best you can and whatever the future holds, you can face it like a champ. You’ve survived this long so you can continue to survive. The future isn’t pre-determined.

Statistically, about 25% of people with POTS are unable to work. I'm not sure what the percentage is for Myasthenia Gravis or other conditions. Many of us who are too disabled to work are young (if mid-thirties still considered "young"). We’re at the age when typically you start building a career, planning for retirement, building a family. Too young to have to spend most of our time in doctor’s appointments, rolling the dice with new medications, getting lawyers to appeal for disability benefits, trying to live life from a bed/couch.

When your worst nightmare happens, you accept it and you find a path forward. You have to remember it’s not the end of the world.

The path forward is what I’m focusing on now. My life has changed considerably. Instead of focusing my energies on a career, planning syllabi, working through piles of student papers, reading new research, I spend most of my time managing symptoms now. I plan doctor’s appointments. I coordinate my care. I portion out my medication. I plan for med changes (there are always changes). I use my inhalers at the right time every day so I can breathe. I stick to a strict exercise routine. I read. I write. I play music. I play video games and watch sci fi tv with husband. I see friends and family sometimes. I see how fast I can go down aisles in my wheelchair (who wants to race me?). I sit quietly outside in my yard and ponder the universe. I sing to my cats. I’m trying to make a good life around my limitations. I’m making it work.

A friend gave me shark bag for my wheelchair, Looks badass, right?

I live honestly and truthfully now. I’m no longerliving a lie. My normal has changed and that’s ok. I have a comfy couch at least. 

There is some emotional baggage that comes with losing your career. I won’t deny that. I imagine San Francisco International Airport has less baggage than I do. So much of our identities are tied up in work, career, independence. It’s difficult to unravel that to find out who you are without it and what your purpose is. I’m still trying to figure out what my purpose is.

But I have used some resources and tools to work through the baggage, work through the grief, and find a path forward. Here are a few:

1. I see a therapist. Talking to friends and family is helpful but I can see many of those around me with care-fatigue, the on and on of illness is wearing them down too. Sometimes you can't go to your support network anymore and you need professional support. Dealing with illness is exhausting on all levels and working with a therapist can help you attain vital coping skills. I have worked with one off and on most of my life and I had a really great one for the last two years, until sadly he moved. Now I’m starting over with a new one, which is daunting. Until science can create teleportation technology so I could I see him still, those are the breaks.

2. There are a lot of books out there about how to cope with illness, mental health issues, and difficult transitions in life. I’m working on reviewing each book I read related to illness as suggestions for others going through the same thing. You can find reviews in the “Spoonie Reads” section.

3. You’re allowed to be sad, to wallow a bit, and even to give up sometimes. That’s completely allowed. Working through the chaos illness brings to your life is a process that takes time and patience. You don’t have to make it look easy. You just have to find a way to keep fighting, whatever it takes.

My policy is to never give up when anyone is looking and to always get myself together in time to face the next day. Every day has new possibilities. I’m grateful to have the chance to meet them. Whatever you have to tell yourself to keep going. If you focus on the unfairness of illness and count your disappointments each day, it’s difficult to move forward. There has to be a way forward.

4. Find new hobbies and interests within your limitations. As an academic, I never had time for hobbies. It is an all-consuming gig. I played music but even that became a job as I would play in restaurants and weddings, etc. I even worked as an artist doing children’s artwork for many years. A lot of my hobbies became jobs at some point, so now I’m trying to find some joy in them again for myself. I have other things I’m interested in now that I had no idea I had a passion for while I was working. Now I have time.

5. Use online communities to help you feel less alone. It is easy to feel like you are suffering on an island of pure absurdity when you have rarely diagnosed conditions. Often times, you never meet someone in person who also has your disease. The online communities help you feel less alone, yet I try to use them sparingly now. It can get easy to get sucked into these communities and end up even more frustrated. Take some time away to live life. It’s easy to let illness become your identity, but it doesn’t have to be.

6. Remember what you still have and what you can still do. Besides finally finding acceptance and living authentically, learning how to feel gratitude has been the greatest lesson I’ve learned since I stopped working. My whole life my brain is always saying “what’s next? Where am I headed next?” but now I’m trying to learn how to feel satisfied for once. I try to live in the moment more. I have an overwhelming sense of gratitude that I draw from for strength on most days.

Although my life is very limited, I still have so much. I have an amazing husband, my family is rebuilding our bonds and moving forward despite my mother’s continued decline, I still have my creativity and passion. I am able to finally live within my limitations. There’s still so much to be thankful for.

7. When your dreams are dashed, you also have to make new dreams. Pining for the old dreams that are outside of my physical limitations is a fool’s errand. That will only lead to frustration. So I’m really working on creating new dreams and new goals. Everything takes some adjustment and I’m a professional at adapting at this point. I should put that on my business cards.

When I left my job and finally started to work toward acceptance, I realized that my ultimate goal in life was to be able to live a good life within the limitations of my conditions—instead of constantly having to push myself past my limitations. Whatever that looks like, that’s my goal. Everything else must fit within the parameters of this goal.

The dream deferred can rise from the ashes to take flight again. It just needs some coaxing and some determination. In the next part of this post, I’ll discuss what dreams and goals I’m trying to work toward now. 

The Next Round

It’s been a relatively quiet April on the health front, which I am so grateful for. I still had appointments almost every week but they were not necessarily related to diagnosis and treatment. I needed that break, and the universe gave me a win. I’m still filled with frustration about test results, the struggle to get a diagnosis, and the daily battle of managing a nebulous condition, but I’ve been able try to get to a better place this month, reorienting myself into a life that isn’t completely defined by being ill. Listening to the suffering and experience of others, trying to understand the historical civil unrest in my country, helping my family when I can, reading about prehistory, analyzing every detail of the results of the ancestry tests my husband and I did.  

But it's time to re-focus. I start the next round of appointments next week. I see my new local neurologist in two weeks, and I have an appointment Stanford on Tuesday and will finally see my neurologist there.

I’ve had that appointment for almost a year. I saw him last May, which feels like a lifetime ago. I had just finished my first year as a full time professor and it was the most brutal semester I’ve ever been through. I had to go on leave twice during the semester and my symptoms were worsening every day. I wasn’t using a wheelchair yet, but I needed to. I was struggling to drive and my independence was starting to slip away. 

I’m trying not to let the ghosts of that last appointment haunt this one. I left feeling like it was a great appointment but when I read his notes he mentioned that he discerned no walking difficulty and that I needed a “more positive outlook.”

I cried a little during that appointment. Life was pretty bleak at that moment. I didn’t get to say goodbye to some of my classes (again) because I was on leave, in my heart I knew that I was going to have to either radically change how I did my job or it was over, and the mysterious symptoms were only getting worse. Of course I was upset. I try to smile and keep a calm demeanor in appointments, otherwise you end up with notes about mental health and stress if your file, further invalidation. But I’m honestly getting to the point that I don’t care what they say. 

I spent a lot of years trying to justify and explain in appointments to get them to hear me. At this point, I don’t have the energy for that. Now I just try to present my symptoms and experiences and communicate effectively. These are my symptoms. Take it or leave it.

At that appointment a year ago, he explained that my mystery symptoms of weakness, difficulty walking, difficulty breathing, etc were not related to POTS. I had those symptoms for over a year at that point but I was still hoping they were related to POTS so I didn't have to get back on the hamster wheel of diagnosis. He gave me a list of tests he wanted me to do, and as I listened I knew those tests would take a very long time and that a diagnosis was at least a year off. At least. 

I started suddenly having mobility problems about two years ago and I told my primary doctor about it first. He took me seriously and said it was likely something else presenting itself. I refused to believe that at the time but I have told him since then that he was totally right. He figured that out before any other specialist. I really need to send him a fruit basket someday.

I saw him yesterday so that he could fill out my long term disability paperwork, and every time he sees me he asks, “did you finally get a diagnosis?” Nope. Together, we have been fine tuning innovative ways over the last few months to explain and label my symptoms for these forms without using a label that is unofficial, to the point that it becomes a humorous art. You have to laugh at the absurdity of it sometimes.

I don’t want to set myself up for disappointment, but I am hoping to finally get that label in these next appointments. Not just for the peace of mind but mainly because of the material benefits it offers: I could finally put it on my official paperwork, I can wave it in front of insurance companies who want to refuse treatment or deny benefits, and I can have access to other treatments options. If it is Myasthenia Gravis, I'll have a condition that sounds like a Harry Potter spell, so I'll feel pretty special.

I try to remember that a diagnosis is not the end game, a better quality of life is. But I can’t help wanting the diagnosis. It’s been the carrot I hold in front of myself as I’ve gone through all the torture testing for years. Yet, even with a diagnosis I know that my life wouldn’t change dramatically, but damn it would help. 

I’m doing my usual routine of carefully writing out symptoms, notes, and questions, and gathering test results to bring. Most of this has become second nature for me and my husband so it makes it easier to keep going, even when both of us are completely worn down by this process. We are staying in our favorite hotel again next week before my appointment. It’s pricey but I’m very much looking forward to that part. Sometimes it takes little things like this to make it easier, little rewards and treats along the way to make it a little more fun and enjoyable.

So this is what it looks like when you want to give up on this process but you continue to press on, trying to keep a “positive outlook,” keep digging deep for whatever pieces of hope you can find, and remember that you’ve come this far so you can keep beating on. It’s not easy, but it’s not impossible. That’s important to remember.

Whatever the results of the next appointments are, I’ll come home to my life with my cats, my husband, my music, my books, and it will be all good. I'm trying to remember that life will go on no matter what. I’ll keep working toward my goals, trying to create some art and music, write some words that have meaning, exercise as often as possible, and continue to feel grateful for this life and how lucky I really am. 

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

One More Test

I’ve been dreaming about quitting my day job as a disabled couch barnacle to be a more productive member of society again, go back to teaching or become an archaeologist, a scientist, or a jazz vibraphonist. Or all of the above.

But in the meantime, I’ve still got work to do. I’ve been writing about the saga of getting a firm diagnosis for likely Myasthenia Gravis for some time now and mentioned that I had another test last month at Stanford.

I had hoped to come home maybe with something definitive. A label to provide a tangible explanation.

But it didn’t happen.

I haven’t written about it because I needed to try to get my brain around it, try to logically work through the anger and frustration, so that I don't unleash it into the world. No one needs to see that. I was in a dark place last month and the holidays weren’t the real reason I took some time off from writing. I was seriously depressed. I’m doing a little better now but it waxes and wanes. It’s something I’ve battled my whole life and this strange ride through illness really amplifies it. Not even all the chocolate in the world can pull me out of it, but a little doesn’t hurt.

My husband and I made the long trek to Stanford so that I could do a Single Fiber EMG, an EMG that is specific to MG diagnosis. It wasn’t the test that disturbed me (more giant needles. Been there done that. Whatev). My doctor said that I couldn’t take Mestinon for 24 hours. I’ve mentioned before that I’ve been having a lot of difficulty with breathing, a common symptom of MG. More than anything, the Mestinon is helping this symptom. I’ve grown fond of breathing. I’m accustomed to it now. Please don’t take it away.

I had already cancelled this test once. It had to happen. I booked us a hotel for multiple days. I can no longer make the trip to Stanford in one day. The hospital is only about 2 hours away, but with Bay Area traffic, we often spend 6-7 hours in the car. Along with a few hours for an appointment, it’s just way too much for me now. Sadly, my body requires that I treat it like the delicate flower that it is. I needed extra days this time so I didn’t have to travel while coming off the Mestinon. I bought some oxygen designed for athletes. I packed some books, some movies, my shower chair, my wheelchair, and we said goodbye to our cats and headed out.

My husband is a master organizer and packer. All those years paying Tetris really paid off for him

I splurged a little on the hotel since we had to stay there a few days, and it was worth it. It was an adorable little hotel and each room had it’s own enclosed patio. They even gave us the handicapped room, though I think the only difference was that it had a shower chair. We ate over-priced, underwhelming take out, re-watched The Lord of the Rings, my husband slept all day, and as the Mestinon wore off, the breathing difficulty and weakness intensified. Yet, I didn’t have to do anything but sit in that hotel room, read, and hydrate. It wasn’t a vacation but it was definitely ideal.

On the day of test, I put on my finery (workout pants and a loose fitting sweater) and we headed to Stanford.

They called me in and told me to lie on the table. I had flashbacks to exactly a year earlier when I did autonomic testing and a regular EMG in the same room. I thought that EMG was a breeze. They warned me that this one would be more painful and take much longer. They weren’t kidding. The needle had to be placed deep in the muscle and held for 20-30 minutes for each reading. I had to slightly flex my ankle or leg so they could get a reading of how the muscle was responding. By the end, I was convinced I had sprained my ankle. Once they removed the needle, it snapped back. It was fine.

They told me to dress this way so I couldn't get my #hospitalglam on unfortunately

My doctor oversaw the test but it was a different doctor I had never met before who performed it. My doctor came in periodically, making jokes and being jovial as usual. When they finally finished, he read the results. “Slightly delayed but normal.”

 Everyone in the room turned to me and said “Aren’t you relieved?”

I was not. No. I was not. It didn’t matter what the results were. There’s no way that I can accept losing most of my mobility rapidly over a year as “normal.” Or waking up repeatedly in the middle of the night because I’m not breathing as “normal.” What I’m living is anything but “normal.”

Honestly, I wanted to scream. I had made a detailed list of my symptoms before the test since I hadn’t been able to talk to this doctor since May. I wanted to tell him about how much I have declined since then. How I can barely leave my couch or bed. I just wanted to be heard.

Someone in the background said “your next patient is here.” They wrapped everything up and my doctor started leaving. I asked him to wait and tried desperately to compose myself. I was angry and frustrated. I hadn’t gotten a chance to say anything. All those notes I made and I had to try to quickly condense it into a few seconds.

I work hard to maintain a calm, collected exterior in appointments and tests. This is important so you can communicate and to avoid that pesky label of being “overly-anxious.” I lost my cool. When my doctor looked at me, he must have seen it because he asked me, “are you going to punch me?”

I tried to explain the symptoms I was experiencing and my confusion. I had tested positive for the antibodies for Myasthenia (which aren't a false positive for anything else), I had the symptoms, and they were already treating me successfully for it. If it looks like a duck, quacks like a duck, isn’t it a duck? He explained he was hesitant to provide that diagnosis right now. He doesn’t want me to have to start taking a long-term steroid. I understand this, but I don’t understand why we can’t just put aside the song and dance and just finally label the darn thing. 

He said we should do the antibody test again and perhaps the results of that would change the diagnosis and mentioned I should do pulmonary function testing. The results of my antibody test showed that they have doubled. I should probably contact him to ask about it, but I haven’t. 

I knew better than to have such high expectations for one test. This was one test in years of endless testing. I forgot that this is a process. There are often no delineating lines between symptoms, testing, diagnosis, treatment. They overlap and intersect. But this one time, I just wanted something solid. Just this one time. For once.

I was in bad shape at the end of the test. I was off my medication for over 30 hours, had just been tortured, and was exhausted. Yet, I still deeply regret losing my cool. Often when you are doing testing and even during appointments sometimes, you are just a body in a room. Doctors talk about your body to each other in front of you. Motion to your presence. You sit there silently trying to absorb the medical babble to listen for something familiar or understandable. The process can be incredibly dehumanizing.

I don’t regret trying to make my voice heard. The physical and financial costs for me to get to that table were significant for my husband and I. I don’t get to see this doctor again until May. I can’t keep waiting. I can’t keep suffering with no answers and no response. I wanted to be heard. I wanted to maintain my humanity and give voice to the experience of this body.

Another disappointing test. I cried most of the way home. My husband keeps asking “why does a diagnose matter so much?” I wrote a post about it here, but there’s more. There’s something very material about a diagnosis that counterbalances the nebulous, invisible experience of illness. It’s an explanation, a satisfying answer for my broken body and spirit. It isn’t the end game, but it’s a means to move onto the next stage in the journey, open possibilities for treatment, and I could finally put the label on documentation.

So I came home and went back to my job being a couch barnacle. Maybe I’ll make employee of the month soon. I'm still waiting and waiting for some answer. Still dreaming and fighting for a better tomorrow still.

Next week I have another test, pulmonary functioning test. I hope that I can finally have some proof for my breathing difficulties, but I’m not holding my breath (see what I did there). One more test. Not the last surely. Not the end of this journey, with miles to go before I sleep.