Invisible Illness Awareness and #MyVoiceMyBody

This week is Invisible Illness Awareness week and although technically this entire blog and everything I share on the Facebook page are related to invisible illness in some way, I wanted to write a specific post to celebrate the week.

There are many issues related to invisible illness that are near to my heart but one point I hope to make by sharing my story is the importance of maintaining authority over our experiences of illness and our own bodies. So many of us suffer through years of being told "it's all in your head" by doctors or told we don't qualify for treatment by insurance companies because we don't fit into a specific label/category or told we aren't "technically disabled" by government assistance programs. I've been told all of this. We see illness and disability misrepresented in media or appropriated for the able-bodied.

It's difficult to quiet the noise sometimes and remember to find our voice again and reclaim the authenticity of what we experience.

For so long I hid my illness and didn't talk about it. I thought if I could just ignore it, I could control it and make it go away. I internalized the voices around me and even punished my body for not adhering to what I was being told: if it truly was all in my head, I thought I could force my body to just comply. It only made me worse.

But going through this made me realize that honesty with myself, with those around me, with the medical community (and refusing to believe I was wrong) was the only way I could achieve acceptance and find a path forward. When I started to be honest, I found that I coud reclaim authority over my body again with my voice. I didn't have to live in terror or punish my body for its refusal to just get back to "normal."

I had to find my own truth again.

Starting this blog and talking about my experience on social media has helped me rediscover that truth and live honestly. It has helped me understand that I cannot control my illnesses but I can control how I respond to them.

I try to represent my experience truthfully, even though it may create cognitive dissonance for some. There is no rhyme or reason with illness. Sometimes you have good days. Sometimes you have bad. And there's a ton of grey in between.

These picutres are an example:

The one on the left was from a few days ago. I've had to spend most of the last two and half months in bed. But every day I wake up, I put some make up on, I get dressed, and I hope today is better than yesterday. I don't feel the part, but I want to look it. I wheeled myself outside and took a selfie. I posted the picture on my blog page and talked about finally getting the Myasthenia diagnosis last month and finally starting treatment. I was feeling ok at that moment and feeling positive about the future. I wanted my smile to represent that. I even put a scarf and earrings on. Bonus points!

Sometimes people will comment about how well I look. I know whatever I look like on the outside belies how I really feel. But I also like puting in the energy to feel good about myself and hoping my body in turn feels a little better. Sometimes it works.

Not long after I took that picture, I had to go lie down with my BiPAP and rest. That is what my day entails now. I have to spend either most of the day or just the afternoon in bed on my breathing machine. I look like a comic book villain when I wear my mask but at least I have some mascara on. You have to own it.

I post pictures of myself when I'm wearing my BiPAP too. I try to make fun of myself sometimes but I also want to represent my experience truthfully. The two pictures are a dichotomy but often that's what illness is.

Whenever I talk honestly about my experience of illness, I have started using the hashtag #MyVoiceMyBody as a reminder that I'm not trying to fit into anyone else's expectations about illness or disability; I'm using my voice to represent my truth. I hope anyone who is reading this will join me in using the hashtag.

Use it to talk about your diagnosis story, use it to spread some humor despite the horrors of illness, use it to raise awareness about your specific condition, use it to make illness (physical and mental) visible, use it to speak your truth and reclaim authority over your own experience.

Over the years, I have found that too often when we speak our truth about our experience of illness, that truth isn't visible for a wider audience. Either we talk in closed groups and message boards online or behind closed doors. Many able-bodied people and many in the medical community have no idea what living with an invisible illness entails. They don't know that so many of us suffer for years without a diagnosis. They don't know that our experiences have been misrepresented. They don't know how good life can be despite illness and all that you can learn from it.

The writer Cherríe Moraga said "silence is like starvation." Speaking your truth is a form of power, a means of survival. When others hear our stories, the stories can raise awareness and inspire change.

All I want is for no one to ever have to hear either "you're wrong" or "I don't believe you" ever again.

So I'm hoping by making illness visible and sharing our truth, someday no one will ever have to hear that and go through the same suffering.

Because this is my voice, this is my body, this is my truth.

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 

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.

Celebrations

So it is my 34^th birthday today....a very sassy 34

My birthday is a weird time of year since I got ill. POTS entered my life in 2011 and things started to go rapidly downhill for me around my birthday that year. I was still pushing through the PhD program and everything hit critical mass that fall. By October, I was fighting so hard to pretend everything was ok.

By the time my birthday hit, the gig was up. I left the PhD program on November 2^nd 2011 and life looked crushingly uncertain. It’s three years later and I am in the exact same place, at rock-bottom and gazing wearily once again at a very uncertain future.

So yea, my birthday is always a strange time. I am constantly measuring time and illness—thinking “this time last year I was better. I was able to do this and that.” Last year, we had a party at our house because my BFF and I celebrate our birthdays together since they are so close. We had a good time and danced a little. I had finished my first evaluation as a full time professor and did so successfully despite being putting on a brave face while ill. I felt badass and accomplished. I inhaled some decadent chocolate cake in celebration.

This year is completely different. I'm not working. My new office I prepared during the summer is sitting empty. There is no dancing. Instead, I spend my days asking myself “Can I safely drive, shower, prepare a meal?” "Am I able to walk to my kitchen?" I sit on my couch or lie in bed and ruminate on life, surrendering to this opportunity to recover an authentic self. 

My goal was to just show up and be present for my birthday gathering this year. I did have to lie on my friend’s bed through part of it, but I showed up and had a good time. I missed everyone else's birthday this year but made it to my own at least. We sat around and talked about the absurd things we always talk about. It was glorious.

I’m trying to remember that measuring is not living. Pretending is not living. 

My circumstances may be similar to three years ago but my outlook is changing for the better. Although this year has been an endless roller coaster of struggle, I’m working on bringing joy back into my life, which has been absent for years now. Climbing the academic career ladder and fighting a devastating illness blinded me from the things I used to love. When your body is just holding onto mere survival, there isn’t much room for anything else. But I am trying to re-discover the things I left behind.

I’m working on celebrating life and finding small pieces of joy in it by reclaiming my creative spirit.

Like music. I finally finished some songs I’ve been writing for years now and even got one recorded this summer. Music has been my guiding light for most of my life. I may have degrees in literature, but music is more important to me than any piece of literature. I desperately miss performing, but I still play and sing almost every day when I am able. I used to play in restaurants, bars, and weddings, and I took being able to perform for granted. Now, when I get the chance I really savor it. My dream is to record an album of all originals. It’s my number one life goal, and it will happen.

You can hear the recording of "Upright," which I wrote as a reminder to myself of my strength despite my limitations. 

I am listening to my records again. I have been listening to vinyl for the last 15 years, before it got cool again (I am such a freaking hipster). I’ve dragged this collection over state lines multiple times. I’m rediscovering records I haven’t listened to in years.

A few of my favorite things: vinyl records, Harry Potter, twinkly lights

I’m drawing and painting a little again. Just a little. 

I studied American literature, but since I left school all I’ve been reading is fantasy literature. I am reveling in reading whatever I want. When your body refuses to let you move, reading can be transportation.

One benefit of being ill (there are a few) is being forced to be still. I’m a workaholic, so this is anathema to my nature. My brain used to be constantly in motion preparing for what was next and what else I could achieve. But now that I’m regularly bed/couch-ridden, I must lie still and just exist in space. I remember the flavor of life and the pulse of community.  I am given time to reflect—to be truly tethered to the present. This has been transformative. I crave the things I genuinely love, relinquishing the trappings of adulthood that can blunt so many of our real desires.

It’s an opportunity to peel away the layers of self we build to present to the world to instead find a truer self, one that has been lost in the saturation of daily life. It’s been a chance to say I survived going over the edge of the cliff, a chance to observe with clarity and then ask myself, “What do I really want? What meaning can I make from this experience?” 

This sounds hokey, but it’s a reality I’m living. It’s brutal and harsh but beautiful and worthy of celebration as well.

I was a writer before I was anything else. I came to music as a writer. I became an English major because I’ve loved writing and pursued an academic career on the strengths of my writing. Starting this blog and writing again feels like a rebirth and celebration of what I still have and what I have learned. It is the gravity that pulls all the random pieces to make them unexpectedly fit together.

Even in the darkest of times, there can be an opportunity for celebration. Today I celebrate what I have overcome and what I’ve endured. I celebrate who I am, those I love, and all that life gives and takes from us that is truly worthwhile.

The even-numbered years seem to have a better track record for me. I'm letting go of the things that don't matter. I'm bringing the sass. Let's do this 34 

I even ventured outside briefly today. The demon in the background appreciates the sass

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?