Mindfulness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here are some related links that might be useful:

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

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


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

"Mindfulness Meditation Physically Changes the Brain"

"6 Mindfulness Exercises You Can Try Today" 

Surviving the Holidays

 A sense of panic starts to awaken around October, as Christmas decorations start furtively replacing Halloween decorations and the realization that the holidays are upon us. When you are chronically ill, the holidays offer added stress and panic. In the online communities I’m part of, I have already noticed the anxiety levels increasing with questions like “How will I prepare a meal?” “How do I get my house ready for guests?” “What do I talk about?” etc. My anxiety about the holidays started in September. Spoonies are great at finding solutions in difficult situations. We’re professional survivors, so I think it’s safe to say that we can find solutions during the holidays as well.

Holiday gatherings and parties are taxing for anyone, but for Spoonies they are especially challenging. For me, this year will be different. I’m not working and I have become home-bound. I have been able to do less and less over the years, but this year will be all about survival. My biggest concern is the New Year’s Eve party my husband and I always have at my parents’ house every year. Throwing a party is out of the question for me at the moment so my husband will have to do most of the work unfortunately, which he understands. Sometimes, this is reality. My goal is to be able to show up for the holiday gatherings and this party. If I can accomplish that, I’ll be over the moon.

Here are some suggestions to consider for the holidays and I would love to hear if you have other suggestions:

1.  Plan Ahead
I’m sure many of you are like me: I have a very careful plan whenever I leave the house and I try to prepare for all contingencies. This may mean bringing medication, mobility aids, fluids, etc with you.  If you are going to a friend or family member’s house, you may need to discuss your needs with the host or your family members. You may need extra care during a gathering but no one will know this unless you communicate it.

Maybe you’ll have to break up your preparations over a few days because you know that trying to do it all in one day will mean you can’t enjoy yourself or you’ll end up bed-ridden. You can even make a list or a plan for yourself if that helps.

If you have to travel, have your emergency supplies on hand with you. I have a giant purse that has water, salt, meds, and protein in it at all times. Prepare for the worst and hope for the best. You know how many spoons you have so conserve and use them judiciously.

If you are spending the holiday alone, as Spoonies must do sometimes, prepare to have a restful and enjoyable day. Do something for yourself and know that spending time alone means you can celebrate on your own terms and manage your health without extra stress or pressure.

2.  “What do I say?”: Listen

I saw someone mention this and I often ask myself the same question. I’m not working, I only leave the house for appointments, I spend most of my time managing symptoms, and I’m re-watching Downton Abbey for the thousandth time. What do I have to discuss with anyone? Sometimes illness can be the elephant in the room when you are with friends and family, but it does not have to be a focal point. You only have to discuss whatever you feel comfortable with.

Although some Spoonies do not have a vibrant external life, this often strengthens a person’s internal life. Whenever I think of this exchange, I think of Emily Dickinson. We still have much to share.

It can be difficult to not feel sad or even resentful when you hear others discuss working, traveling, or exciting social lives, but holding to this negativity will never lead to happiness. These feelings can take us out of the present and make us feel worse about our quality of life. I have found a lot of joy in just listening to others discuss what they are doing and living through those experiences vicariously. I think illness has given me the gift of being a better listener and living more in the present. This can make you more compassionate as well. Share your ideas and thoughts and enjoy listening.

3. Ask for Help

This reiterates the first point. If you know that an activity or condition will sink you, ask for help. Maybe you’ll have to delegate cleaning or cooking. Maybe you’ll have to explain your dietary needs. Asking for help is anathema to my nature, but I’ve learned the hard way that every time I didn’t ask for help when I should have, I ended up not succeeding.

Don’t set yourself up for failure. You know more than anyone else what you are capable of and your limitations so communicate this. Hopefully you have people in your life you can rely on and trust so you can communicate that this time of year is especially challenging because they may not know this.

I have a very specific diet, so sometimes I bring my own food or eat before a gathering. Maybe you’ll need to bring a chair to sit in. Do whatever you have to do. It’s easy to ignore our own needs to maintain the appearance of functionality or to not create distraction, but your self-preservation is the utmost importance. Going to parties and being part of celebrations is a rare treat for many Spoonies, so do whatever you have to do to enjoy it.

I’ll be bringing a blanket to our NYE party so that I can lie down in one of my parents’ rooms throughout the party because I won’t make it otherwise. I’m also going to adjust my medication schedule and hydrate all week to see if I can last for a few hours. I’ll put on a smile and do my best to enjoy it.

4.  Celebrate

Maybe the overwhelming stress, the sight of singing Santas, and having to hear Paul McCartney’s “Simply Having a Wonderful Christmas Time” one more time is putting you over the edge, but it’s easy to lose sight of the fact that this is a time to celebrate. Find something to celebrate, whether it’s spending time with friends and family, cheating by eating food you normally wouldn’t allow yourself to eat, or getting to wear something sparkly. Carve out some celebration and enjoyment for yourself.

I thought the last two years were difficult, but this year was the most difficult year health-wise for me by far, but I feel like a warrior for surviving it. I know that I can continue to survive it. That’s worthy of celebrating.

Even if you don’t have anyone or many to celebrate with, celebrate yourself. If you can't go to a gathering, you can celebrate on your own terms. You made it through another year of battling illness with dignity and grace. Your strength is worth celebrating!

I wish you symptom-free days, chocolate, and lots of joy for your holidays. How are you going to enjoy yourself despite your illness?

Absurdities

This blog is an exercise in honesty and exposing the often invisible battles of the chronically ill. This is the truth. I am digging deep into my reserves of perseverance right now and keeping a stranglehold on hope. I am living a life much less vertical these days. I rarely am able to leave the house, so I’m feeling less of a member of the daylight experience. I’m considering only dressing in black and really committing to this vampire lifestyle.

The weight of the world is heavy on my shoulders. There are some intense family issues going on. Not only am I not able to work, doing basic things like showering, preparing meals for myself, driving is getting harder. Leaving the house requires using the wheelchair. I've lost my independence, but I'm working on adjusting to this new normal. I keep thinking “I’m 34 years old. This can’t be it. This won't be it” 

I’m trying to focus on the present because that’s easier. I am living authentically still and learning how to not fight my illness so hard, but it feels sometimes that I have relinquished even the illusion of control over my life to this illness. It will take time to adapt. Luckily, time is what I have right now.

Life is filled with an endless string of absurdities. I like to get lost in the abstraction of it sometimes. One way I’ve learned to cope with all of this is to focus on the nonsensical nature of being, and living with illness turns the absurdity up to eleven. This helps relieve some of the heavy weight off my shoulders if I can laugh about it or see it objectively as a ridiculous charade. 

Here are some recent absurdities: 

  
--- My husband and I have gone to Stanford so many times this year, we’ve joked we should get an apartment in Palo Alto (except we aren’t exorbitantly wealthy enough for that). So I sent a message to my local neurologist to see if she could do one of the tests they asked me to do at Stanford nearby. Instead of giving me a yes or no response, my doctor’s nurse turned a simple communication into an impossible riddle. It was like communicating with the Mad Hatter. I even had my primary doctor intervene to no avail. I asked that question over and over and could not get an answer. So I gave up. I’m making the long trek to Stanford to do the test. Forget it.   

I then tried to make an appointment with that same doctor and I made the dumb mistake of mentioning I may have a new diagnosis to that nurse. The nurse told me “if you have a new diagnosis, you can’t get an appointment without a new referral.” I’ve been seeing this doctor for eight years, and I need a new referral? I've been doing this long enough to know that this not how the referral process works. Ridiculous obstacles and incompetence like this explains why the average time to diagnosis for the chronically ill is six years. 

I was already thinking about breaking up with this doctor, and this sealed the deal. I don’t have the energy to fight obstacles I shouldn’t have to fight and this nurse has been a huge obstacle. When I do finally get a new doctor, I will write a letter explaining how much extra stress that nurse has caused and why I had to move on. I want to tell my doctor “It isn’t you. It isn’t me. It’s your impossible nurse.”

 

  

Finding a new doctor is hard. I'd compare it to dating because the goal is to find a doctor you can be with long-term. You need compatibility and shared goals, so I don’t want to make the wrong choice. Divorcing a doctor is messy, complicated business. We need something like a dating website for patients and doctors. I want to plug in what I’m looking for in a doctor and a website will connect me with a doctor who has similar interests and who has heard of my bizarre conditions. We could talk online and exchange pics and then decide to meet in person. The first question I’ll ask: can your nurse answer basic yes or no questions?

Hey girl, I even know what POTS stands for

 ---I'm having a hard time getting around my house, even with my cane sometimes. If we have the ingenuity to identify the Higgs boson particle, I think we could start creating teleportation technology. That would make getting around easier. Imagine what it could do for traffic congestion.

--- I mentioned in my last post that I am going to Stanford next week for another test to perhaps get a confirmation of Myasthenia Gravis. I am not sure what's been more difficult: getting the initial diagnosis for POTS or getting this differential diagnosis. I will hopefully leave that day with some answers and maybe even a diagnosis. My husband and I are preparing for this appointment. If you are young, female, and fabulously ill, I recommend taking someone with you who can confirm the accuracy of your explanation of symptoms. I’m using a wheelchair, having difficulty talking and breathing at the same time (totally overrated anyways), and working hard to maintain enough functionality to not be constantly bed-ridden, but I have still been met with skepticism. I have only seen this doctor twice in two years, so I’m trying not to take it personally. 

When I saw this doctor in May, I was in really bad shape. I was in my second leave of absence that semester. I missed the end of the semester and didn’t get to say goodbye to my students. I was bed-ridden most of the time and devastated that I could not succeed at life let alone succeed at my dream job. I left there thinking it was a good appointment. A few weeks later, I read his notes and at the end he wrote “patient needs a more positive outlook.” Absurd. I’ll never forget those words because they undermined how hard I work every day to maintain my health and hold onto hope.

I’m not worried about the test; I’m worried about what my doctor will say and whether I’ll be able to keep it together. I have learned the hard way: there’s no crying in baseball and there’s no crying in appointments. Keep it together because any emotional response could lead to invalidation. All I want is to leave there with some answers. After all this time, I just want something tangible I can hold onto that explains this chaos.

If it really is Myasthenia Gravis, another very rare illness, I should probably start playing the lottery if I'm this good at ridiculous odds.

--- Halloween was just a few days ago, but I’m probably going to get my Christmas tree up this week. Surrounding myself in glitter and twinkly lights makes everything better. I like to celebrate glitter year-round. I don’t think that’s absurd at all.

 

I hope you have a tactic you use to navigate life’s struggles. Stepping back from the madness of life to appreciate the absurdity of it all gets me through sometimes.

Why Getting a Diagnosis Matters

I’ve been thinking a lot about why getting a diagnosis matters lately. Because many with Dysautonomia or other rarely diagnosed and invisible illnesses must go through months to years of appointments and testing to get a diagnosis, I have often wondered why we fight for one despite the constant obstacles and hurdles to obtain it. For many illnesses, especially rare and complicated ones, time to diagnosis is typically six years or more.

In 2011, I spent a year going through endless appointments and testing before I finally got diagnosed with POTS. I’ve spent most of the time since then going through endless appointments and testing to figure out what else is going wrong. Comorbities are common for Dysautonomia patients and they can spend years trying to obtain differential diagnoses. Never expect life to be easy, that's for sure!

I’ve mentioned before that about a year and a half ago I suddenly started having difficulty walking. I’ve gone from using a cane, to a walker, to now having to use my wheelchair if I leave house in that short amount of time. I am rarely able to leave the house at this point. Leaving the house is overrated anyway. Except, I miss it.

When I mentioned my walking issue to my doctor’s nurse practitioner when it started she basically told me I was imagining it. Invalidation all over again. So I tried to believe that for many months. But then I couldn’t get around and had to get a cane. I was continuing to lose my mobility rapidly. Hey, every 30 something goes through that difficult period of trying to figure out life while losing their mobility, right? Well, maybe not. I wasn't imagining this.

Having just one random illness no one has heard of is not a thing

I finally saw my neurologist this year. It had been two years between visits (the dude is popular and busy), and I told him what I was experiencing along with other disabling symptoms, he gave me a list of tests I would need to do. My heart sank. He was taking me more seriously but I knew all of those tests and appointments meant there would be no answers for at least another year. That was over seven months ago. I have only gotten progressively worse since then. My couch has a permanent Stefani shaped dent in it. 

While I fought to get the POTS diagnosis, I never dreamed of giving up. I'm in my fourth year of seeking a more complete diagnosis. The drive to give up has been surfacing from my subconscious, but that's not in my nature.

In one of the blood tests, I tested positive for an antibody for Myasthenia Gravis. Loss of mobility, weakness, difficulty breathing, and fatigue are signs of this autoimmune condition. In two weeks I do another test for MG. Maybe a diagnosis? My doctor had me start a medication last week that is used to treat this illness. But still, no official diagnosis. After all this time, will I finally know? But this led me to question why does a diagnosis matter? I am technically already being treated for this and have been learning how to cope with it, so why does the label matter?

Not many people want to be pigeon-holed and labeled. When you are desperately ill, that label is a like a trophy, engraved with the words "I Was Right!" Some never get a complete diagnosis and must suffer the costs of uncertainty long-term, but many of these patients still search for a label for their suffering. A label of an official diagnosis can matter for many reasons.

   Official Recognition and Documentation

Insurance companies and the medical system seem to operate in a very black and white world although there are some of us who live permanently in the grey area in between. There is nothing cut and dry about rare, complex conditions. Yet, a label and diagnosis fits into that tiny square in many medical forms titled “medical conditions" (good luck fitting more than one condition in that square). Having to list a grab bag of symptoms doesn’t seem to hold much weight in their world. Sometimes a grab bag of symptoms leads doctors or medical professionals to instead give a patient a psychiatric label such as “depressed” or “anxiety.” It’s easier than admitting they don’t know sometimes or investigating further. The irony is that depression and anxiety often are an effect of disabling symptoms met with invalidation, not the cause.

This is unfortunately incredibly common for many Dysautonomia patients. There can be serious ramifications from this invalidation. A lack of diagnosis could lead to patients not getting approved for a needed test or treatment option. It could mean a patient cannot get needed accommodations at work. It could impede accessibility to essential services for the chronically ill and disabled.

For those who are so disabled that they are unable to go to work or attend school, an official diagnosis could be a life line. This could help them qualify for disability or other types of assistance. For many, a diagnosis is essential for these practical concerns.

Often when you are chronically ill, you will encounter many doctors who do not know your medical history, you will have to fill out stacks of paperwork, and you will need to communicate to the medically uninitiated (such as employers, family members, etc) your needs. A diagnosis provides a concise explanation. 

Truth really is stranger than fiction. You can't make this stuff up. There’s nothing quite like having an entire Wikipedia page dedicated to your rare condition that you can direct them to when you have a diagnosis. The label leads to vital information and resources. It provides you with a prognosis and information to understand your body. A grab bag of symptoms rarely does. That leads to fruitless internet searches and typing into Google "am I dying?" The label can matter.

 

     Validation (Hey, I’m not just crazy!)

Finally leaving the inhospitable world of uncertainty behind for the more ordered, life-affirming nirvana of diagnosis gives patients validation, especially if they have been told they are wrong by many doctors. It lets patients at least take a break from the endless hamster wheel of diagnosis. This has practical financial, legal, and bureaucratic concerns as I mentioned above, but it also assuages the psyche of those who are desperately ill but have been denied proper care and treatment under the label of mental illness.

When I was finally diagnosed with POTS, I wanted to sing in the streets. Then I wanted to send the primary doctor I had who told me over and over “you’re just stressed” and ended up making me worse a flaming bag of dog poop. Ok, I won’t do that but I still think about it.

After being told by so many doctors that I was wrong, I was finally right. When you get a diagnosis, it's like reading a prequel to your life. The plot holes, disjointed timelines, and weird flashbacks of your story start to make sense.  I have learned that sometimes you will still encounter invalidation and continue to have to “prove” you are ill, yet you can wield a clinical diagnosis like a weapon against these forces. You aren’t wrong. You have proof. The label can matter. 

     Treatment

Perhaps most importantly, a diagnosis can lead to treatment options where there were none before. As with most rare conditions, no specific drug has been created to treat Dysautonomia and POTS as a whole, but there are drugs that treat symptoms such as Midodrine. Drugs are typically used off-label for Dysautonomia and POTS, such as Florinef (which was created for Addison’s Disease). The FDA did recently approve Droxidopa, an Orthostatic Hypotension drug.

It is difficult to treat a patient without a specific diagnosis, so finally getting that label gives a patient some options as opposed to few or none. Even with a probable diagnosis, you can have treatment options. For example, since my doctor suspects Myasthenia Gravis, I have started taking Mestonin and started physical therapy. Proper treatment can provide hope and can lead to a better quality of life. The label can matter.

 

 ***

HuffingtonPost posted an article listing other, innovative avenues for patients with complex conditions to pursue when you are trapped on the hamster wheel of diagnosis. POTS is even mentioned in the article, how about that! Depending on what happens over the next few months, I may pursue #3. 

I have been telling myself over the past year that perhaps a diagnosis doesn’t matter, but that’s the drive to give up talking. It does matter. The process to get there is painstaking to say the least but I have written before that there are ways to navigate it, which is here. 

Even if I also become one of those who must suffer a label-less existence, I know I'm not wrong, and that's what matters the most.

My last trip to Stanford Hospital. Keeping up the good fight

Why does getting a diagnosis matter or not matter to you?

Authenticity

Being on extended medical leave has been a strange ride. I spend most days couch-bound and riding waves of anxiety and sadness, trying to stay on a schedule to keep myself occupied by reading, writing, playing music, and maybe sometimes drawing. I’m also seeing things more clearly than I have in a long time. I sit outside in my yard and think about life and look clearly at the chaos that is happening around me. I want to make my experience useful for others on this blog, but I am still figuring this one out. I know others who are ill or disabled or face other challenges must struggle with living authentically. This is a strange ride indeed.

I have realized that I’ve been living a double life. Not an interesting or even sexy double life as a secret agent or a superhero. I’ve been living a very boring one. I’ve been pretending to be “well,” to be able to stand, drive, be accomplished and have a career, and then come home on the weekends and be bed-ridden, unable to do the basics like cook for myself or do laundry. My husband picked up the slack on everything else. 

I’ve been pretending to be one of them—living among the well who talk about traveling, doing yard work, or going places after work. Pretend to not be on an endless cycle of suffering and needing to go to the hospital. Pretend to not have just dragged myself off the floor of my office or the bathroom and then walked into a classroom to teach. 

But as I have been getting progressively worse this year, I have maxed out my credit card on pretending. My body will no longer let me pretend. I no longer have the will power to keep up the charade. 

This is a good thing because now I can try to live a more authentic life. I have been lying to everyone and to myself for a long time—lying about what I am really able to do and who I really am now. Maybe living authentically is easier for others with chronic illness, but I thought I was making illness look good. For whom?

I’ve never been much of a liar because I’m really bad at it. Bullshitting is not really my deal. But I can put on a stellar performance of being “well” that I start to wonder if theater was my calling.

I wanted people to think I could do it. I needed to believe I could do it. There’s too much at stake if I really can’t do it. I wanted to believe that if I pretended long enough that maybe the performance would become reality. Fake it until you make it, right? It didn’t work out for me. It only made me worse. My fairy godmother never came to give me some killer heels and turn this pumpkin into a new life.

But I can’t do it. The independent, ambitious woman I was a few years ago is now wholly dependent on others to get by. And that’s ok. I still use my polite words, “please” and “thank you.” I'm grateful for the friends and family who have shown their true colors and stood by me and for my husband, who is my hero.

So I’m going to try this authenticity thing. Reality is harsh. It means doing very little driving. It means not pushing myself so hard every day, which is second nature now. It means accepting that my options have narrowed and I may continue to get worse. I’m going to be honest with strangers, friends, family, myself about what I am able to do moment to moment. I am going to keep using the electric cart at stores no matter how many times I get dirty looks from the elderly. I'll use my wheelchair when I should. I'll use my shower chair with pride. I’m going to remind people that despite being young and having a rosy glow (that’s the makeup talking), I am not well.

It means that I no longer care so much what others think, and that is incredibly freeing. I can deal with the stares when I use my walker. I can now pluck up the courage to say “Pardon me, but I think I’m going to faint. Do you happen to have a fainting couch so I can make this look fabulous?” My illness is an unpredictable beast and I’m going to stop fighting it so hard. It means suffering in silence less and maybe becoming in tune with the world around me once again.The future is very uncertain but I'm getting more comfortable with that. I am gaining a lot of life XP in the process, and that is invaluable.

I don’t know what authenticity will look like, but I like the feel of it already. I am sick. I am unable to stand or walk for longer than a few seconds. I can’t breathe sometimes. I need to lie down. I am kind of broken. I am hard core. I’m a tough cookie. I am smart and educated. I am a warrior, fighting from a seated position with plenty of fluids, salt, and chocolate close by.

How do others live authentically despite adversity?