21

My First Tattoo

It's hard to believe that today marks 21 years since I first 'got sick'.

Even though my health has improved significantly in recent years, I still find this day a sobering one. I always find myself feeling 'blah' in the days leading up to my 'anniversary', even if my health is okay.

In an early session with my new counselor, as I told her my story we talked about the years that are in many ways 'lost to illness'. In a moment that took my breath away she said:

"Those years are gone. You can never get them back." 

It's difficult not to try to 'make up' for what feels like lost time, try to pack in all of the things I couldn't do for so long, somehow try to fit everything I missed into my new life. 

I will never get those things back--a career or graduate school or children or any of the other myriad experiences that often take place in the formative years of our 20's and 30's.

In a sense, the finality of her words was what I needed to hear. It felt like the air had been taken out of my lungs. I felt nauseous. 

But, she is right.

Butterfly in our Garden

Those years are not gone in that they made me who I am today. They fortified who I am as a person, my deeply held values, and what matters most to me.

In moving forward, it's about creating my life now. I often forget that I'm not still 23! I sometimes forget that life didn't stand still waiting for me to get better in order to begin again.

It kept moving. And I kept persevering. 

Getting Inked!

In honor of that life and that journey, I got a butterfly tattooed on my arm last August. Over the years, the butterfly has remained a symbol of hope, transition, resilience, beauty and transformation. It reminds me that there will be times when I am in a cocoon and others when I feel fully a butterfly.

It reminds me to keep going.

I chose a monarch because, over the years, I have witnessed many of them landing on the flowers in our yard. It is shaded in corals and oranges with a touch of green to remind me of the grass, trees, and mountains. 

The only element missing is that of water and sky. The original sketch contains blue behind the butterfly, but I couldn't decide if I wanted that or not! So, that can be added later if I decide to do so.

What do you like better?

To Add or Not to Add Blue?

The butterfly is placed as if it casually landed on my arm. I love it. It is a daily reminder of my journey. It is a reminder on the hard days to persevere, to wait for the light to shine again, to know that I might feel like a caterpillar today, but another day I will feel like a butterfly again. It is a reminder on the good days of how far I have come and how I have grown.

A Quote In My Counselor's Office

I set aside the the 18th of June every year just to do something that is meaningful to me.

I'm blogging for the first time in 8 months! Whoa!

New Shop!

This afternoon Mom and I went to a lovely new shop in a nearby town opened by my favorite local jeweler.

Elizabeth and me

I met Elizabeth the first year that I was able to go to our local arts festival after many, many years of being too sick to go. 

I found the perfect necklace. I'll always remember I got this for my 21st anniversary.

As one of my favorite music teachers always says about our days: "Make it a good one." And I did. 

New Necklace! The Photo Does NOT do it Justice!

Despite the fact that my health has taken a bit of a dip lately, it was a wonderful afternoon, after which I napped, ate dinner with Mom and headed out for our evening walk.

A Treat!

And, since it's my 21st birthday all over again, I'm enjoying a bit of La Crema (one of my top favorite wines), too.

Here's a toast to the journey. 

Blessings,

Emily 

20 Years Sick, 20 Thoughts (Part IV)

6. There is relief in letting go of a dream. Once the door to motherhood closed a couple of years ago, I intensely grieved it. Earlier this year, I began to feel relief that the question had been answered for me. I no longer had motherhood as a choice (in a biological sense), and it opened up space to create new dreams. It's not always a negative to let go of a dream, or to redefine your dreams.

17. I'm still trying to make my life fit into that of a body that doesn't work properly. I find saying no, even to lunch with a friend, agonizing. I still push myself past my limits because I struggle to limit myself when life is so full of beautiful things. Every choice I make to say no feels like a loss. Life is full of missed opportunities for all of us. Every time we choose one thing over another or say no to something, we do miss out. This isn't something unique to chronic illness, but it is absolutely amplified by chronic illness. If you could choose one thing to do in a day or a week or even a month, how would you choose? What would you choose? What price would you pay physically to do that one thing?

18. Grief and gratitude co-exist on a daily basis. I believe that these two feelings will co-exist in my life for the rest of my life. I recently made peace with this when I read Toni Bernhard's thoughts on 17 years sick. We can absolutely feel two emotions at the same time. 

Example: I am SO happy to be able to go to the park for a little walk and not be in the wheelchair. I am SO happy I can leave the house at all now. I am SO sad that I can't take mile long walks anymore and just escape into nature for hours. I am so sad that I cannot enjoy the physical highs of exercise and the self-confidence that being in shape brings. Rinse and repeat. Apply to every daily activity. 

When we become sick at a young age, we lose a lot. No one told me that grief would be the most challenging part of my journey. It's constant, gut-wrenching and devastating. Honor it.

I know I talk a lot about grief, so much so that I hit people over the head with my discussions of it. This is because I had no idea that it was such a part of the chronic illness experience, and it is in many ways, an unrecognized type of grief. For those who are newly diagnosed or those living with grief, I want to acknowledge its role in chronic illness.

For me, giving up the dream of motherhood was the hardest thing I ever did. The physical suffering of chronic illness is grueling. But for so many of us--the emotional toll, the losses and the griefs--are as hard or harder than what we deal with on a daily basis physically. To the children I loved who never came into this world I say: "I would have named you Isaac because I wanted you to know joy." Or "I would have named you Esther because you would have been my star." I have cried out to G-d in deep heaving sobs asking him why He did not want me to be a mother.

19. Living in the present is the only way I can survive. No matter how you slice and dice it, I will live with a chronic illness for the rest of my life. I have no idea how we will all survive this physically, emotionally and financially. All I know is that we have done the best we can to plan for the future, and we are okay right now. While I do try to problem solve for the future, it's too uncertain to have any firm plans or decisions in place. This can invoke total panic. I try very hard not to let the good that is now be clouded over by fears of the future. I don't succeed every day. I am human.

20. Every day I still wake up surprised that I am so sick. This illness is just as confusing to me as it is to you. The symptoms of this illness are invisible to me and to you. Symptoms change over time, come and go without warning, are difficult to explain, and vary greatly from person to person. If I wake up feeling 'well', I feel ready to conquer the world. I am quickly reminded that my body is not suddenly going to be ready to head out for an invigorating run.

I often wonder how we can feel this awful without really understanding what is going on or how to do much to fix it. How do we really explain fatigue? I remember when I couldn't buy shoes that tied because by the time I got them on to leave the house, I would be too tired to leave. Or when I was too tired and weak to eat dinner sitting up or to eat out on our patio. Eating out on the patio, enjoying Mom's incredible garden and locally sourced food is now one of my very favorite things. 

When you ask me what my symptoms are, I often find myself tongue-tied because of how they change from day to day and how each individual symptom may not sound very debilitating, but in combination they can and do amount to a great deal of suffering.

I've now woken up 'still sick' for two decades of my life. 

Blessings,

Emily

Photos: More photos from Musser Gap.

20 Years Sick, 20 Thoughts (Part III)

11. My life is amazing and beautiful. Holy Oprah Ah-ha moment! This sounds trite and cliche. Before you cringe, hear me out. Being sick sucks. I hate it. But, in the midst of it, I am so freaking fortunate that it often brings me to tears. So many people, especially those with disabilities, live a life full of great struggle beyond living with their illness. I happen to live in a town I love, to live in a house I love, with a mom I love, with two dogs who are like children to me, and with all of my needs met. I eat healthy home-cooked food every day. The same person (Mom) has been my caregiver for my entire journey. My dad and Abbie live nearby. My healthcare team is beyond incredible. My friends rock. People show me kindness above and beyond my wildest imagination. I love the work I do for Hopkins and for activism. 

12. I need people to fight for me. I never thought I would be considered one of the vulnerable ones in our society. But I am. I can do my teensy little share of advocacy, but I need healthy, energetic people to care for and fight for me. This means I need people like the tireless Dr. Rowe to keep doing his research and search for solutions. I need healthy people to help me with Rowe's Research Runners. I need people like my friends running for office who understand that, because they are in a position of privilege and ability, helping people like me matters. My friend M. said to me: "It's our job to do this for you because we DO have the energy and the ability." Making peace with this idea took me two decades. 

13. No one asks me "What will you do when you get better?" anymore. This is, in fact, an incredible relief. 'Better' means a lot of different things. I am 'better' now than I was five years ago, but I still can't 'work' in a traditional sense. It's less painful to let go of the dream of going back to the life I had imagined for myself 'when I get better' or 'before I got sick' than it is to simply live in the present, live the best life I can, use my energy wisely towards good causes when I am able, and trust that whatever my level of functioning is or becomes, I will use my gifts as well as possible. 

14. I still believe in finding a life partner. In putting myself back out into the dating world again, I realize that my life is wonderfully full. Anyone who comes into my life this time around has to be a value-add for me. Last time around, I believed that if someone accepted my illness that was 'enough' or that was 'the best I could find'. I have fought to create this beautiful life, and I won't let someone be my partner without them seeing that I bring things to the table too. We need to be a value-add to one another. Period. 

15. Chronic illness is about coping. And leisure activities keep me sane. 

Being sick, in pain, and struggling to get through each day is physically and mentally grueling. It's exhausting. My guess is the last time you had the flu, by the second day you were complaining and frustrated and ready for it to be over. Or the last time you injured yourself the healing time felt interminable. Let's think about going through that or feeling that way day in and day out for two decades.

One of my high school classmates had a biking accident in which she became paralyzed. In rehab, she had to participate in leisure therapy. At the time she wondered why this was so important for her healing and life. Later, she found that her photography help to sustain her. When I start to get down on myself for needing leisure time/activities in addition to all that I need for my self-care already, I try to remind myself of her words about why we need leisure activities as part of our survival story.

The suffering can be intense. Sometimes NO leisure activity is possible because you are so sick. And often the type of leisure activities people like me can do are limited (to different degrees at different times.) During my worst times, listening to Performance Today on NPR became a highlight of my day. I listened to hundreds of books on tape that a librarian brought me and fell in love with children's literature. My friends Sarah and Bob would burn CDs for me and other folks introduced me to new music, too. I started watching TV and movies--something I rarely did before I got sick. I could do all of these things lying down or in a recliner. I colored, wrote snail mail, pet my dog(s), went for drives with Mom, learned to knit simple items, and found that painting my nails made me happy. The activities don't have to be fancy or expensive--they just have to bring you comfort, peace or joy.

It can be hard to already be sick and struggling with lack of 'productivity' and independence, and then require leisure time to cope mentally or survive. I still struggle with guilt when I'm resting with a quiet activity that I can manage while my mom is tirelessly maintaining the home life.

To me, much of the chronic illness experience is about coping. By this, I mean finding ways to ease the suffering if at all possible. This can mean wearing a pair of heated slippers for unbearably cold feet; finding just the right pillow to alleviate or minimize neck pain; setting up the car for travel so that I am reclining the entire time; finding a way to sit while doing make-up and hair; having a total of six (yes, six!) recliners in our house; buying slip-on shoes rather than tie ones; wearing blue-light blocking glasses so that I can be on the computer or watch TV longer; getting a smartphone so that I could stay in touch with my friends and family when I was bedridden; using a shower stool when showering; finding apps that help make life easier--like using Voxer to chat with friends on our own energy timelines and sleep-wake schedules; and asking people to reach out in ways that are manageable if talking on the phone is too hard or emailing is too hard; showering at night instead of in the morning; creating a space that is pretty enough that you can stand looking at all four walls and the ceiling for days or weeks on end; getting a zero gravity chair so you can sit outside and lugging it to picnics, events or even concerts at our performing arts center; getting a handicapped sticker so you can go places more easily; using home delivery services for books from the library or accessing those of the Library for the Blind and Physically Handicapped. I've needed and done all of these (and a zillion--yes a zillion--more) things at various time throughout my illness.

Both our coping and our leisure involve being innovative, creative, patient and open to trying things that may seem quirky and crazy to 'normies'. Anything. ANYTHING that makes your life easier and more comfortable and easier to cope is of value.

Blessings,

Emily

Photos: Part of the Musser Gap area/trail. Soon to partly be used for luxury student housing and a park. :( Goodbye to one of my favorite vistas. 

20 Years Sick, 20 Thoughts (Part II)

6. It's still possible to live a meaningful life. My life feels more focused, clear and and meaningful than ever before. That being said, I am able to look back and see how my life has ALWAYS been meaningful, even in the darkest, most difficult times. 

I have a large circle of friends, including many who live with varying degrees of health. My sickest friends--the ones who worry the most that their life might not be meaningful or who feel like a burden-- are some of the most reliable, emotionally intelligent, empathetic, kind and compassionate people I know. 

In this world, kindness and compassion are more important than almost anything.

7. Research has advanced little in the last 20 years. This makes me sad for myself, for every person I know with these illnesses, and for every person who is newly diagnosed. I recognize that answers for treatment and diagnosis will come after I have lived a life with these illnesses. I stay hopeful that my quality of life will continue to improve, but I rest quietly in the knowledge that research for illnesses that don't have funding goes SLOWLY.

Right now Rowe's Research Runners combines my passions, my story, my quest for meaning and my desire to create change. I like that I'm settling into this new role just as I also mark two decades of living with chronic illness.

I keep my hope alive for future generations of people with these illnesses and I do my work for them (and for Dr. Rowe's legacy, of course).

8. My story matters. It took me a long time to be able to say this. And it still feels a little strange to say. How do we use our story as a catalyst for change while remaining humble and focused on others? Just when I think writing is a selfish act, I will get a message telling me how much a post helped someone, validated someone, or served as an ah-ha moment for someone. 

9. Use mobility devices if it means I can have more freedom and be more engaged in the world around me. This is a hard one for a lot of us. Sometimes I still miss the Rolls a bit because it allowed me to go on longer outings. It gave me freedom and allowed me to leave my house. I still use a seat cane for times when I know standing will be hard. 

For people with dysautonomia and/or chronic fatigue syndrome, I would consider using a zero-gravity chair or reclining chair as a type of mobility device. If using one at the movie theater, theaters around town, at services, at a gathering/party means you can go instead of stay home because you can't sit up long enough, use one.

In the same vein, wear compression garments, and wear them with shorts if I want to. If it bothers you, just think how uncomfortable *I* am wearing these suckers!

10. Finding 'people like me' is part of my survival story. I am not sure how I would have endured the last 20 years without the friends I have met from around the world. I spent years on DINET's forum where I got both help for my illness and lasting friendships. I have been friends with some of the women I know for over 16 years now. 

Having friends who 'get it' means I can text them just about anything--emotional and physical--and they understand me. Pretty much no topic is off limits or TMI with us.

Blessings,

Emily 

Photos: Arboretum, Mother's Day 2018 (May 13th). Viburnum; Apple blossom tree with petals on the ground.

20 Years Sick, 20 Thoughts (Part I)

It's a couple of days before my anniversary of getting sick (June 18,1998), and I woke up feeling tearful and crabby. I put aside my to-do list for the day and decided to write instead. Every year, this anniversary stirs up a lot for me. 

Here are my 20 thoughts on 20 years sick (published in installments). I've written them from MY perspective only, as I know there is no 'one size fits all' for living with chronic illness. 

1. Mark My Anniversary. Taking the time out to honor the losses and celebrate the victories, allowing myself to feel the emotions of the journey and finding a ritual to mark my anniversary provides healing for me. I have planted trees in our yard; printed words that define my journey and burned them in a dish of floating candles; had a girls night out for drinks when I felt better; treated myself to an outing at Ulta for a makeover and new beauty products; planned a special meal with Mom or simply left the day 100% for me. 

This year I'll spend my anniversary getting a salt stone massage (I've never had this before!) with one of the message therapists that is a tremendous part of my healing journey; have dinner with Mom and our neighbor, Marge, to celebrate her 80th birthday and....

I will be getting a tattoo. Yes. You read that right. I have a consult scheduled the week of my anniversary, and the tattooing will be done in August. I have wanted a tattoo for a very long time, and I'm ready to get a small tattoo that reminds me, in a positive way, of my journey.

2. I now define myself as a person with a disability. This is a huge mental shift. For a very long time, I just said I was sick. I now view myself as a person with a disability. Person first. Always. I am not a disabled person. 

The evolution of viewing myself in this light resulted from the 2016 election. Up until that time, I remember hearing Hillary Clinton speak in our town in 2008. She spoke of PWDs as part of those who matter and who she fights for. I remember thinking: "she's talking about me. And she's including me in her language."

But I didn't fully recognize myself as a PWD at that time. Now I do. This shapes my passion for activism for all PWDs, not just people with my illnesses. 

It's lead me to meet with my congressman, campaign for candidates who support healthcare for all and protection of people with disabilities, work for affordable healthcare, connect with larger healthcare organizations and, in general SPEAK OUT.

Relatedly, I now say: "I live with a chronic illness," rather than "I'm chronically ill." For so long I have put so much emphasis on my illness that it is as if I shake someone's hand and immediately say: "Hi! I'm Emily and I'm chronically ill." My counselor compared it to her going up to someone and saying: "Hi my name is E. and I'm gay!" Chronic illness is a part of me, but it is not all of me. Shifting this perspective is still in process. I find that I am most fearful of chronic illness as an immediate deal breaker when trying to date.

3. How others view me is their issue.  I surround myself with people who view my journey as one of resilience, perseverance and light. I don't have time for people who cannot see past my illness to my core or who see it as a weakness or something to pity.

4. I'm letting go of shame. We live in a society that wants women to be young, healthy, skinny and uncomplicated. For so long I have felt shame over being a person with a disability; over being sick; over living with illnesses that many people do not believe exist or are deeply misunderstood; over being sexually assaulted; over being a Medicaid recipient; over not being skinny. I've even felt shame around not being married, not having a career and not being a mom, as is 'expected' by society.

That's a lot of shame to carry around. I would rather pronounce myself a survivor, an advocate, and a person whose life experiences shape her world view for positive change  than as someone who has so much to be ashamed of. 

I'm no longer going to check off all of those boxes of shame.

5. Chronic illness affects and effects every aspect of my life. Every. Single. Thing. Every moment of every day. Period. It has become our 'normal.' We are so used to my sleep schedule, my medication schedule, planning out how to make things doable, figuring out foods to eat, etc. 

In this same vein, managing my health has to be my full-time job and number one priority. If I don't keep managing and maintaining my health front and center, I lose even more of the freedoms I do enjoy now. I don't love this reality, but I'm trying to accept it and honor it rather than push against it.

I never rest in stability. As I say: "It's always something with me." The last 20 years have literally been one empirical trial after another.

Blessings,

Emily

Photos: Tulips at the arboretum on Mother's Day 2018 (May 13).

19 Years Sick: New Dreams

Just Chillaxin' with Mr. G This Spring

It's the eve of my 'anniversary of getting sick' or my 'sickaversary', as my friend, Ellen, would say.

When our lives truly change in an instant, we don't forget it. 

June 18, 1998.

As I write this my mood is reflective, emotional, somber, grateful, and most of all, HOPEFUL.

Over the past 19 years, while clinging to hope that I might find some healing, many times things felt more hopeless than hopeful. 

Mom Prom: April 2017

This year, I feel hopeful that I am at the beginning of a new life.

I feel hopeful about finding new dreams and achieving some that have been on hold. I feel ready to let go of others.

Celebratory Dinner!

Tonight (since my actual anniversary falls on Father's Day and I'll be spending that with Dad), Mom made me a celebratory dinner.

We toasted to healing, to feeling hopeful, to being able to enjoy life together, to be free of the endless crises that dominated so many years of our lives, to having more fun and more adventures, to perseverance, to resilience, and to all good things.

Yes, That Would Be a Rhubarb-Strawberry Crisp

Recently, I turned to my mom and said: Would it be an exaggeration to say that I have lost all of the dreams I had ever hoped for after college graduation?

She said it would not.

With ICE CREAM!

A career, graduate school, vacations, being with friends, marriage, motherhood, living independently--all of the things I dreamed of when the world appeared to be my oyster. Not ONE of these dreams has come true.

Even the little dreams like being at friend's weddings or baby showers or reunions or meeting their children or learning how to cook or taking a class or all of the little things most of us do without a second thought mostly disappeared.

How would you feel if every dream you ever had was lost?

It makes me profoundly sad.

My Loves

It's hard not to feel that I 'lost' much of my life to illness. It's hard not to feel that it's not just a little bit unfair. 

It's hard to let go of some of the most precious of those dreams. But it's also time to let go of many of them, and it's getting easier to do so.

Dreams change and dreams evolve.

I'm ready for these new dreams.

This Year's Sand Dollar Finds--All While WALKING On The Beach

For the first time in 19 years, I'm increasingly able to enjoy life, even within my limitations.

For the first time in 19 years, I have enough energy to begin pursuing MY dreams and MY passions. 

I'm no longer only an observer of life. I am a participant in life.

I am an activist. I am an advocate. I am a fundraiser. I am a volunteer. I am dog mom. I am a friend. I am a daughter. 

I love people. I love dogs. I love nature. I love art. I love food. I love good books. I love TV and movies. I love the beach. I love nail polish. I love snail mail. I love to be a girly girl. I love dresses. I love pink. I love tea. I love music. I love texting. I love fireflies, butterflies and dragonflies. I love baths. 

I. LOVE. LIFE.

I never stopped having passions, I never stopped going crazy being trapped in a body that didn't allow me to participate in life. Meanwhile, I maintained and grew in my love of the many gifts that we are given on the Earth.

Being able to actually engage (with limitations) in my passions is what makes me so excited about what lies ahead.

Mardi Gras Mom Prom!

In almost every way (other than the fact that I am getting older), life looks a lot brighter than it did a decade ago. 

In reflecting on what lies ahead, I do feel that there is still time for me to find a life partner; to pursue my passions of advocacy, awareness, and fundraising; to train my dogs to possibly be therapy dogs; to be with friends and family more; and to just generally enjoy and engage in life more.

Beach Bums

Life is uncertain and fragile for all of us, and I am always (perhaps more than most) acutely aware that things could, again, change in an instant. I worry a lot about healthcare and money and losing a parent and getting sick again. 

(Dr. Rowe assures me the sky is NOT going to fall down on me again. :))

Feeling the Water On My Feet

I will always carry a level of grief and trauma that is unique and different from most people my age.

I will always be sad about lost dreams. 

And sometimes it weighs me down. A lot.

I have really hard days--emotionally and physically. 

Because, after all, I am still chronically ill. This is still a 'sickaversary.'

I often feel sad about not feeling well and still missing out on things.

19 YEARS is a really, really, really long time to feel like crap day in and day out.

Most days, though, I find that I am amazed that I can somehow wake up looking forward to what life has in store for me; feeling that even after this much trauma and loss I feel so hopeful about the future; feeling that there is still so much left for me to be and do in this life; feeling hopeful and thankful and blessed. 

The Sky's the Limit

So, today? Right now? I am grateful. I am hopeful. And I'm not just saying that because it's the cliche thing to say.  

I truly am, and I always have been. No matter how sick I am, gratitude and hope have remained central tenants of my life. 

I have been cared for and loved beyond measure. 

Endless Waves and Endless Possibilities
(Mantra, thanks to my friend, Karma)

I raise my arms to the sky and shout: I'm ready for this new life. I'm ready for new dreams. I'm ready for dreams to still come true. I'm ready to welcome what You have waiting for me.

Blessings,

And Happy Father's Day to my Dad--one of my biggest supporters, who always, always, always stayed hopeful. 

Emily/Champ