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.

Momentary Distraction

So much has happened since the last time I posted but I am still not doing well enough to type an update. I'm writing this on my phone. I've spent almost all of the last two months in bed on my BiPAP, recovering and trying to improve. I'm not there yet but I'm starting to get there. In the meantime, I'm going to try to share some little writings and crappy poems from my journal that I still write in almost every day. That seems manageable. I wrote this one a few days ago:




I crackle
I break
A body with a language all its own
No one can decipher
But a petal here
A petal there, look
It bends, snaps
A momentary distraction
Pause the piecing together
Holding limbs that fray and unravel
Clenching it all together for just a breath
To let it collapse
Look as it blooms
There's life pulsing there
A tiny blade of grass alone
A diaphanous web clinging in memory
Sunlight piercing trees
For just a moment the internal battle ceases
And I remember how to feel alive

Lamentations and Celebrations

This month has been a bit of a whirlwind, a blur, a catastrophe, a gift.

Physically, I have not been doing great. I’ve had some pretty severe insomnia. I’ve been an insomniac my whole life and in moments of stress and physical strain, it gets significantly worse. I’ve had a few nights this month where I don’t fall asleep until the sun comes up. Then sleep for a few hours and get up so I can stick to the strict med routine. Naps are the worst thing for insomniacs so I trained my body not to nap many years ago. Naps and I aren't on speaking terms. Sleep is the most fundamental element for staying afloat with chronic illness, and I need it to breathe ok. But I know eventually things will normalize. Although I don’t think I was ever meant to be a norm.

We had the celebration of life gathering for my mother two weeks ago at my parents’ house. A gathering was the best way to celebrate her since we’ve had so many at their house throughout the years. I was worried about being able to show up and interacting with so many people, but I managed to piece myself together enough and I did it. It’s brilliant sometimes what strength we have in our depleted reserves that we are able to tap into sometimes. It was actually a wonderful day. 

I saw many people and family I had not seen since I was very young. About 70 people came, which is a testament to the impact my mother had on people. I wish I could’ve had more energy to talk to more people and hear more stories, but I’m satisfied with what I was able to do. It was a day injected with positivity and love that me, my sister, and my step-father all needed after the trauma of the last year. It almost felt like an episode of “This is Your Life” with seeing people from different eras of my life at the same time, all coalescing around the influence of my mother.

Almost my whole gymnastics team reunited. We reminisced about all the trouble we caused together 20 years ago

Now I’m working through the grief—in a haphazard fashion because I’ve never done this before. As my mother was in hospice care, I had anticipated that this part would be easier. I thought since I had a chance to say goodbye, and I was able to prepare, minimally, it would make grieving easier. I would feel relief and gratitude. I do feel those things, but they are muddled underneath giant waves of regret, sadness, and disappointment.  

We had a slideshow of pictures of my mom at the gathering and looking at them felt like falling back in time, back to when my mother was my best friend and we could laugh and talk. Back before I was ill. Back when my family was whole and all the pieces seemed to fit together, unlike the jumbled, disjointed present that lacks congruity. But it was a day of remembrances and joy, and I'm incredibly thankful to have experienced it.

So I’m still trying to chart a path forward. Try to work through the grief of losing my mother far too young, the grief of losing my health and independence, and feeling tremendous gratitude for what I still have. Those remnants of what remain are gifts—treasures bestowed in the form of lasting relationships, talents, memories like movies I can still get lost in, and love that still reverberates all around me. I finally feel some comfort again when I listen to and play music, which is my greatest solace. If you walk by my house, you’ll hear Stevie Wonder, Van Morrison, Led Zeppelin, or Vince Guaraldi blasting. I'm still listening to the playlist I made of my mother's favorite music. You’ll also hear me playing some Elton John or jazz on my keyboard (and sadly not singing still but hopefully eventually), but I'm still playing. I'll always keep playing.

It was my birthday last week. It was a hard one but I still managed to have a good time. I went thrifting with my besties, which we haven’t done in some time. My nephews came over and brought me mermaid pajamas. Husband and I ate some sushi. All around, pretty solid. 

The best part was seeing everyone’s pictures for the “Go Blue on 22 for Dysautonomia” event I created on the Facebook page. It was a great way to raise some awareness communally and celebrate together. I’ll definitely do it again next year. Here are a few of the pictures a few people shared that day:

My BFF Carrie Anne and her daughter Isobel

My mother-in-law: A nurse, all around badass, and always my biggest cheerleader

My gorgeous sister and her friend Scottee

My sister-in-law who was born to wear blue

My crazy nephews

My BFF and sister in music Melynda

My Dysautonomia shirt I ordered didn't come, but I had a backup plan

Next year, I'm hoping I can have a bit more energy and focus and I'll put all the pictures people shared together and post them here. That was all I was able to pull off to celebrate Dysautonomia Awareness Month but I'm satisfied with it. It was a good day.  

After some time off, I have multiple appointments in November to prepare for, including one at Stanford next week. I’ve been debating not going to it the last six months because my appointment there in May was very disappointing, for a variety of reasons. There is an enormous physical and financial cost to going to appointments there. We have to stay the night now because I can’t do the 5-7 hour drive and the appointment in the same day anymore. I’m hoping this next one is better because it’s difficult to fend off the “I give up. Burn it all down” impulse and disengage from the medical process, but I’m going to put my head down, show up, do my job, and be there. It's all part of the ultimate quest for a better quality of life. I'm trying to remember that. It’s at least a reason to leave home, see the beautiful Bay, and miss my cats.

So thanks for the patience as I’ve been posting sporadically the last few months. I’m hoping to get back to life back to reality in the near future and start posting regularly again. I have a long list of posts to work on. I was even thinking about signing on for NaNoWriMo that starts on November 1^st, but I think that’s a bit ambitious right now. I want to stop putting off the book I want to write and just jump in, but I think I need some attainable goals right now; writing 50,000 words in a month just isn’t realistic right now. I’m going back to my goal of getting at least one post a month up. That sounds pretty manageable right now.

It feels a bit like I’ve drowning this year and then surfaced into a world that looks the same but has irrevocably changed. But it’s time to grow some legs and adapt to this new world. This year has been difficult, and when I look back at my birthday post from last year, I want to get some of that spunk and spark I had back. I will. I definitely will. Loss and grief do not "happen for a reason" but it is possible to find some meaning and learn from them. Here's a beautiful article that articulates this better than I ever could.  

I am learning good lessons from the ups and downs and still standing strong, even if only a few seconds at a time with the power of compression stockings. I have a good feeling about 35. Let’s do this. 

Buck Up Buttercup

I think I am turning that corner finally. It’s nice to be a little part of the daylight experience again. Those weeks I was bedridden, my husband was my lifeline to rest of the world. I started wondering if there were still other humans out there. Did a zombie apocalypse happen? Did the machines finally become sentient and take over? I wouldn’t know. I was in bed listening to Enya, focusing all my energy on breathing and surviving.

It’s been a slow climb back. Deconditioning is the enemy with POTS but MG is often the buzzkill for exercise for me. My limbs have minimal movement right now because of the weakness/paralysis, but I am working hard to convince my body it wants to move again. I've been trying to get back to walking and my stationary bike. Slow and steady. I'm moving at a turtle's pace while the rest of the world rushes around me at a hare's pace. Slow and steady.

Willing my legs to move so I can walk with my trekking poles

The last few weeks were some of the worst in some time, but I’m trying to remain undaunted and keep moving forward. The thing with bad patches is they start to feel like they will never end, like sinking into quicksand and every time you move or make effort to climb out you just sink further and further. That's a lesson I hope to learn finally: sometimes you have to just let your body sink and then eventually, with patience and diligence, you make the slow climb out. I'm almost there.

This week has been a significant improvement. I’m taking joy in little things and accomplishments:

One of my friends had a yard sale and gave away many of her vintage clothes. I love all things vintage, and I woke the morning of the yard sale knowing there was no way I could leave my bed/couch still and venture out. The thought of all those clothes sitting there made me so sad. But one of my besties, Carrie Anne, my thrifting soulmate and sister in brokenness, gathered up what she thought I might like and brought them over. My world was complete.

A pile of free vintage clothes. Who could ask for anything better?

**

Something really really great happened. One of my goals has been to get some of my writing in online publications. I sent out an adapted version of one of my blog posts about learning to live honestly and authentically with illness to a few places. I wrote this post about a year ago when I had to stop working and I had realized I had been living a lie for years and the gig was up. The Mighty picked it up and posted it a few days ago. You can see it here. I'm hoping to start sending more work out there. I recommend all the articles at The Mighty. They post stories from the ill, the disabled, and their allies. It's a great platform for voices that are so often invisible. 

After this article was posted and I started sharing it in some of the groups I'm in on Facebook, I had an unbelievable response and a few people started contacting me. I’ve met some new, fantastic people in the last few days because of this article.

This is my favorite unintended consequence of “coming out” with my illnesses and starting this blog: meeting kindred spirits and so many inspiring people. I had no idea that would happen. I’ve made quite a few friends along the way, those who are “kind of broken” and those who aren’t. That has been an incredible gift. 

 ** 

I hadn’t left the house for two weeks, perhaps the longest of any rough patch I’ve ever had, but husband took me to the used bookstore around the corner today and I wheeled around a bit. I got a new book to feed my nerd interests. He bought a book about engraving. It was nice to see other humans and to see that the zombie apocalypse had, in fact, not happened yet.

85% of the things I own are books and vinyl records. What's one more?

*** 

So there are fewer weeds right now. It’s hard to remember during a really rough patch that things do eventually turn around. It feels like it will never end. But it usually does.

Buck up buttercup. Everything will be ok. 

Thank You

I'm a little early for the season of being thankful, but I wanted to mark something important: My blog recently hit 10,000 views! 

I didn’t expect that to happen for a long time or maybe ever. It took a long time before I even cracked 1000. I just wanted to say thank you to anyone who has read or commented on this blog. I started this blog in February of this year, and I didn’t know what to expect. One of my life goals is to write a book about the bizarre health adventure I’ve been on the last few years, but this is a daunting goal right now so I thought a blog would be a little more manageable.

Writing has given me something to focus on as the chaos of illness was taking over my life during the last year, and it’s been cathartic and transformative. It's helping me feel productive as I am not able to work. Through this blog, I have been able to connect with people who inspire me, and it has helped me feel like I am part of a community. It’s been a real gift.

The purpose of this blog was not an exercise in narcissism or to unleash my crazy into the digital ether (although it is out there now); my goal was to make sense of this strange ride and then make it useful for others. 

I contemplated abandoning writing this a few times this year as life became overwhelming or when I felt like I was just a prating fool, but I knew I had more to say. I’m thankful I didn’t give up and thankful people have found value in it. I'm working on more posts and even submitting some writing. Wider venues offer opportunities to raise awareness about rare conditions and the often invisible battle of chronic illness.

I figured I would take the plunge and make a Facebook page for the blog, which you can find here.

Thank you for reading, for inspiring me, and for showing me how to be a warrior. Whoever you are and wherever you are, keep up the dream alive and know you aren’t alone in whatever battle you are fighting.

From my couch to yours :)

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