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. 

Happy Myasthenia Gravis Awareness Month

June is Myasthenia Gravis Awareness Month and since I’ve been mentioning it so much over the last year on this blog I wanted to take this opportunity to explain this obscure condition that needs more awareness.

I had never heard of MG before June of last year until I glanced at the results of some of my blood work and saw the words “serological Myasthenia Gravis.” When I saw my neurologist last month, he explained that he was looking for the antibodies related to autonomic dysfunction but accidentally discovered that I had the antibodies typical for MG. I imagine that some or maybe many with MG fall into the condition through happenstance. If you laughed at “fall,” then you are acquainted with this peculiar disease.

Since then, I have learned so much about this condition. MG is a rare neuromuscular autoimmune disease that causes weakness in voluntary muscle movements. It’s not as rarely diagnosed as POTS and has an established history of research and treatment. Like other autoimmune diseases, the immune system sees the body as a foreign entity with MG and begins attacking itself. It does not attack the muscles but specifically the receptors that allow muscles and the brain to communicate. Maybe you can see the problem here. Here is a great infographic that does a better job explaining this. I’m just a Humanities nerd, so the science bit is always above my head:

As mentioned above, common symptoms include droopy eyelids and weakness in muscles that affect facial movement, chewing, breathing, swallowing, talking, and limb mobility. MG was termed the “rag doll disease” because of the severity of the muscle weakness. The ocular symptoms are the most common symptom in MG, and some only experience the ocular symptoms. The level of disability and severity of symptoms can really vary person to person. Men, women, children, and even animals can get the disease, and in some cases the disease can go into remission.

Like Dysautonomia, MG can be considered an invisible illness yet the symptoms can manifest visibly. As with most complex conditions, diagnosis can be tricky. I am going on year three of working toward a diagnosis but for some it can take many years. There are blood tests that can identify the antibodies that are specific to MG, EMG tests, breathing tests, and your medical history can help your doctor determine if you have this disease. Myasthenia is usually only fatal during a “Myasthenic Crisis,” which means respiratory muscles become paralyzed and the patient needs ventilation.

About two and a half years ago, I started having difficulty walking and my breathing problem that started with POTS was getting worse. I tried to brush it off for a long time. When I saw my doctor’s NP, she also brushed it off. Yet, my mobility was rapidly declining. I had to start driving between all of my classes I was teaching and eventually, after much fighting, fretting, and cursing my fate, I started using a cane. Then a few months later, I had to get a walker and then over the last 9 months, I've had to use a wheelchair. My breathing problem has also declined rapidly.

My doctor had me start taking Mestinon, a drug commonly used to treat MG. This drug provides the acetylcholine that the immune system attacks in MG so that the brain and muscles can communicate once again.  My breathing improved immediately with this drug, and I’m dependent on it to breathe normally. From August-November, I spent almost every day in bed, but since I started the Mestinon I only have to lie in bed on bad days or if I push myself too hard. It has given me some quality of life back. Yet, this is a short acting drug and has to be taken every 8 hours. It treats the symptoms but does not treat the mechanism of MG by stopping the body from attacking itself. 

I have documented my journey with diagnosis extensively on this blog because it’s been a difficult ride. I have the antibodies but the number is small and my EMG results were mostly normal. If one the antibodies for MG, it is considered a “serological diagnosis." Some with MG are "seropositive" with the antibodies and some are "seronegative" who test negative for all of the antibodies. I also did a spirometry breathing test earlier this year and that was very abnormal. My neurologist explained that it’s still indeterminate at this time. I’m also having some problems such as intense balance issues that are not typically related to MG. Like I said, the journey to diagnosis with many complex conditions is long and bumpy.

Treatment usually includes Mestinon, immunosupressants like Prednisone, IVIG, and plasmapheresis. In my experience with Dysautonomia, the treatments and research about the condition have been extremely limited and recent. There are “common” treatments for Dysautonomia but essentially every treatment is “off-label,” meaning there are no drugs to treat it and doctors use drugs for other conditions that have beneficial side effects for Dysautonomia. There are established treatments for MG and it has a much longer history of research. Yet, these treatments for MG can come with serious side effects. My doctor explained that this is why he has been waiting to be absolutely certain before diagnosing me. I know that many have also heard this from their doctors. I have learned an important lesson about the stakes involved in diagnosis this year. 

The thymus can play a role in Myasthenia and about 15% of people require a thymectomy. The thymus can become enlarged or have tumors, either benign and rarely malignant, called "thymomas." Removal of the thymus offers the best chance of remission of symptoms compared to other treatments. I have even heard recently of doctors removing the thymus even if there aren’t any problems with it because that can be beneficial sometimes. Just a few days ago, I had a CT Scan of my thymus to see if it needs to be removed.

Yet, the fact that there is treatment provides hope, and hope is a treatment in itself.

Maybe you found this blog and this post when searching about MG, or POTS, or chronic illness, and information and knowledge is a vital step in learning about conditions you may have and all of us raising awareness about invisible and rarely diagnosed conditions. Yet, knowledge is only a piece of the puzzle.

When you get a diagnosis, arming yourself with knowledge is only half the battle. Something that I wish someone would’ve told me when this chronic illness journey began in 2011 is that acceptance is your greatest survival tool in your arsenal in living with illness. There will be self-blame, guilt, and profound disappointment, but acceptance can help you live a full life no matter what illness throws at you. Someone in the great circle of being pointed their finger and chose you as the lucky winner to bear this absurd burden. I try to remember this is not my fault. I didn’t choose this, but I accept this burden and seek to make a life bearing it with grace and dignity. These are hard-fought lessons I am continuing to learn and I think they deserve a place among the science and physical realities of any illness.

If you are out in social media, check out and participate in the hashtag #IhaveheardofMG, a movement to give MG more awareness and a face for the condition. 

I leave you with this great video from 1935 that shows the early days of the discovery of acetylcholine treatment for MG. Wait until the end when the woman begins to mop. Every time I attempt to do house work I think of the smile this woman has on her face because I couldn’t do it without that drug either. 

Also, check out the links section of the blog for more information about Myasthenia.

Going it Alone

Sorry for the silence on the blog the last few weeks. May was a bit of a rough ride for me. I had a  “probably should go to the ER” day  almost every week during the month and then got hit with some kind of GI virus which I termed “barfing disease.” It’s taken me a few weeks to feel more like my regular broken self instead of unable to leave my bed or eat food. I’m still fighting nausea every day. 

But I’m getting back to my exercise routine. I’m on the upswing and have a good feeling about June.

Mainly what terrified me the last few weeks as I could feel the deconditioning setting in as I had to spend most of my time in bed was the fact that I had to get my strength back because I will have to go it alone for the first time in almost a year this weekend. Deconditioning is your worst enemy with POTS and it sets in so quickly and is so hard to climb out of. My husband is going on a trip this weekend to participate in the Tough Mudder in Tahoe. He is going to get electrocuted, get hit with tear gas, and jump in ice water over a 12 mile course, and he couldn’t be more excited about it. He’ll have a great time. Plus, he gets to escape the 100+ degree weather we’re having.

So I’ve been crawling my way back and working hard since this will be the first time I will be solo since I’ve become home-bound and dependent on my husband for help with basic necessities. The last time I was solo, he went to Minnesota for our friend’s wedding in September. I was still able to drive myself to a store then, and I even drove myself to Costco to pick up my medicine. I haven’t driven myself to a store since then. That is not my reality anymore.

When he left in September, I had just gone on medical leave and had every intention of returning to work in a week or two. I was still trying to make everyone, including myself, believe I was still capably independent and able to have a career—not fighting an invisible decline that was steadily chipping away at my independence. In those first few days of his trip, it started to dawn on me how dependent I had become, how much I was struggling to do basic things. I realized that I had been living a lie for a very long time. That realization came at just the right time. I wrote this post about authenticity during those few days and made a deliberate shift in my life and self-perception—finally embracing authenticity and honesty. It was the catalyst that finally helped me accept and appreciate my limitations. And I haven’t looked back. Life is so much better for it.

I have this fairy tale image of how it’s going to go this weekend:

I’ll get our house clean while listening to a lot of jazz, play my keyboard, read, make myself meals, exercise every day, watch all four hours of Kenneth Branagh’s Hamlet and other nerdy things husband isn’t interested in, do some painting and writing, my friends will come over and we’ll drink wine, sing, play games…..

A fairy tale indeed. 

I’ll try to do some of those things but I’ll also have to be very careful not to max out all of my spoons so I can keep up with basic necessities. I can't do anything crazy like trying to drive or try to shower in the morning or get over ambitious with my exercise goals. I will take it one moment at a time, try not push myself too hard so I don't end up bedridden again and try not to panic as I wake up in the middle of the night not breathing. Slow and steady. My goal is to successfully make it through.

I want to say I was able to do it.

I am keenly aware that there are many Spoonies out there who regularly go it alone or who are single and do this alone every day. I applaud your tenacity and courage. It is no easy feat because there is very little room for error when you have to do this without help. You are true warriors. Living with chronic illness is a bit like caring for a body that is an impetuous toddler: your will is subjugated to the whims or tantrums the body will unleash at any moment. Any sense of control over your life is a thin veneer you feign to conceal what is truly fathomless chaos. Yet, we keep going and keep fighting. In the words of Elizabeth Taylor...

So all of you out there going it alone or who have access to invaluable help, you got this. We got this. Wishing you all the best 

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. 

A New Year

I don’t really go for sappy sentimentality but I do like the power of reflection, reflecting as an impetus for learning and changing. 2014 was a rough ride to say the least. It was the most difficult year for me health-wise and I felt like I was perpetually trying to claw my way out of quicksand. 2014 was a re-play of the nightmare of 2011: bizarre symptoms that only got worse and worse, trying desperately to hold onto a career and some normalcy, constant tears and heartbreak, low after low. But I don’t want to think in those terms anymore. 2014 also brought gifts that I never expected and wouldn’t trade for anything.

This was the year that I essentially “came out” with my illness and started to be comfortable talking to people about it and even feeling empowered by what I’ve survived. Starting this blog in February was a catalyst for this. As I look back through the posts, the chaos and desperation is palpable in almost all of them but I tried to use writing to regain some power over my life and to understand that chaos. It allowed me to stand in the eye of the storm and sometimes even laugh at the absurdity of it. I had been thinking about starting a blog for awhile but resisted taking the plunge. This has helped me be able to externalize my experience to try to make it useful and educational for others. I’ve also met some great fellow Spoonies along the way.

This is the year I became comfortable with the term “disabled.” I put off getting a cane, then the walker, and then the wheelchair as long as possible. I didn’t want people to see me for what I truly am. Now, I don’t care anymore. I’m more than happy to take my wheelchair or use an electric cart. They mean being able to leave the house safely and comfortably. They also have the added bonus of wearing less sensible shoes and using mobility aids as an accessory, like the glitter cane my husband made me . You also get VIP parking wherever you go when you’re disabled. There has to be a perk somehow.

Glitter cane!

I’ve been reclaiming some things I lost over the last few years. When I was ill, working, and resisting my illness, I was an empty shell of a person. I had no energy for anyone or anything. I was living in a perpetual state of terror, maintaining a calm exterior and an interior in profound disarray. Not living. Only surviving. Living a double life. Now I’ve been reading more, watching endless history documentaries about Neolithic Britain, and trying to write and play more music. It’s nice to have other interests besides working.

2014 was filled with strange enhanced interrogation medical testing, including getting stabbed with needles repeatedly, doing a balance test designed for NASA, and having hot air blown in my ears. Some people can talk about their adventures in travelling over the year, but I wonder how many of them have had a doctor say to them, "Ok. Now it's going to feel like you're peeing." Now, this is how to party.

I have made some progress toward a diagnosis. We know I have some kind of neuromuscular autoimmune disease that is likely Myasthenia Gravis but my doctor is hesitant to provide the official diagnosis. I'm trying to get comfortable continuing to live in the grey area. The plot twists of this medical story just keep getting more and more strange. Even without an official diagnosis, they started treating it and I can do more than I could a few months ago, including doing some sort of exercise every day. I hope to keep up the momentum of that success this year.

Since I’m home-bound now most of the time and creating a permanent indentation in my couch, I really savor moments spent with family, friends, my husband. I am more present than I’ve ever been in my life and that has given me real joy. I’ve stopped taking on things I am not physically able to do with the idea that “things will just eventually get better and I’ll be able to do it” and instead started thinking about living a life within my physical limitations. The process of attaining these gifts was brutal but in many ways it was worth it.

The best gift 2014 gave me by far is acceptance. I spent a lot of energy the last few years hiding my illness, feeling shame and guilt, and fighting it. This had a predictable outcome of only making me worse. I am no longer fighting it so hard and resisting every change and every low. I truly learned how to get over it. I no longer feel the need to explain, apologize, or justify, even with my doctors. I no longer have the energy to do this anymore and it is emancipating as hell. I am what I am so take it or leave it. I want to scream from the mountaintop “Screw it! Whatever! I don’t care!” Then sip some tea and go back to lying down.

I don’t have any resolutions, just a few goals. I really hope to reclaim some of my independence that I have lost over the last year (including driving), conjure more creative output (maybe even some recording), and keep working toward acceptance. (And maybe, just maybe make more progress with diagnoses). I hope to get back to being in tune with the world again. 

I hope that you are also able to celebrate everything you have overcome and achieved this year and I wish you all the best in attaining your goals. I wish you good health, lots of rest, tons of chocolate, and genuine joy.

Thanks for being part of this journey :)

This song by one of my favorite artists perfectly sums up my year. Not sure how Tori Amos managed to tell my story way back in 2007.

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.