How I Spent The 18th

Baltimore Inner Harbor

On June 18th, I was at the Inner Harbor in Baltimore, MD with Kiernan!

Baltimore Inner Harbor

I wasn't at home sick in bed, unable to leave the house. I didn't plan a ritual to shed grief. I didn't plant a tree to mark the day. I was out living life!

Baltimore Inner Harbor

Each of the past three years, I've been able to do something progressively more celebratory. Two years ago, it was purchasing new make-up. Last year it was a girls night out for margaritas. 

Baltimore Inner Harbor

This year, Kiernan and I took a trip down to Maryland to visit his best friend, his wife and their kids.

Pure Joy! Tommy in the Fountain.

This trip was kind of a big deal on so many levels.

Cooling off at the Inner Harbor

First of all, it involved travel. Traveling with a chronic illness is hard work. I wish I had taken a photo of all of the crap I need to pack to survive a trip--from medications to food to special pillows to my white noise machine.

Kiernan did all of the driving (although we did take my new car!). I slept almost the entire way there, and on the way home I did a lot of talking. :)

It's about a three hour drive to Tom and Jenny's house, so the trip was quite manageable for us, and it's exciting that such a trip is now doable for a weekend.

Travel also disrupts my routine, which is still quite regimented. It means missing a nap or sleeping in a strange bed or eating on a different schedule or eating different foods and, in general, pushing harder than I might at home.

Kiernan and Jenny

Travel tends to cause me anxiety. This time, I was traveling with Kiernan instead of my mom and I was traveling to see people we had never met. We were staying in their home, all of us sharing one bathroom and Kiernan and I sleeping in a bedroom near the 'busy rooms' of the house. 

Tom and Jenny worried that me staying in their house with the three boys might make me sicker, but after much discussion, Kiernan and I decided that even if I did pay a price after the trip, we wanted to be in the 'thick of the action' with the family. 

I am SO glad that is what we decided to do. We (and especially Kiernan) would have missed too many special moments.

Best Friends for 20 Years: Kiernan and Tom

It's no secret that I'm an anxious person. 

So, the fact that I stayed so calm about traveling to visit Tom and Jenny and share tight quarters felt like a HUGE victory. Remember, I've spent the past 18 years not being able to visit other people, not traveling, having folks visit me, and being able to maintain a lot of privacy in my own home.

Kiernan and I have only traveled together one time so far--to Wellsboro, PA for our 6 month anniversary. 

Still, I knew he could and would take care of me. The longer we are together, the more Kiernan knows what I need and how to take care of me. I love how he gently wakes me up in the morning with a kiss on the forehead, how he makes sure I have my Oral Rehydration Solution ready to go for the day, how he makes sure I get naps, and how he makes sure I have a meal ready to eat.

Billie the Sweetest Pit Bull EVER

Kiernan did ALL of the planning and organizing with Tom and Jenny ahead of time. I didn't have to do anything! He discussed my sleep schedule, my illness, my food restrictions, how I would deal with the noise of the house, etc. 

Tom and Jenny worked very hard to accommodate my needs in addition to the demands of three children under the age of five! I did my best to change my schedule as much as I could for them.

My Crazy Man: Riding Tommy's Scooter and Wearing His Spider-Man Helmet.

I'm used to being the 'planner' and it felt incredible to know that Kiernan could take care of everything I needed. 

The Littlest Guy: J.P.

Being at someone else's house, especially someone I've never met before AND just happens to be the very best friend of the man I love, meant I felt the need to be 'on' all weekend. That was pretty tiring!

Taking a Breather: Jenny, Tommy and Danny

We spent the 18th hanging out at the house for a bit after I got up and ate lunch. The kids and adults napped while I relaxed. Then we headed into the Inner Harbor. 

Usually, I'm in Baltimore to go to Hopkins! Not this time!

The Inner Harbor is absolutely gorgeous, and I hope we'll go back sometime and explore it more. I'd love to go to the aquarium and museums. 

It was pretty hot out and we were out for a while, so we did use the Rolls. We StRolled around, took in the beauty of the harbor, rode the carousel (so fun!), watched the kids play in the water fountain, and then got a short driving tour of Baltimore from Jenny.

Despite the heat and missing my nap, I managed just fine. We had take-out sushi for dinner. We hung out in the front yard talking and playing with the kids. I still went for a short walk.

Danny's Idea of a Smile :)
He Wanted to Wear the Shirt from Kiernan ALL Weekend: "This is What Cool Looks Like." Ha!

Throughout the weekend, I rested a lot and took some time away from everyone Saturday evening after having gone to the harbor and missing a nap. 

Kiernan got a lot of visiting time in with Tom, Jenny and the kids, including a brunch out on Father's Day morning while I slept.

Godfather and Godson

Kiernan is godfather to Tom and Jenny's oldest son, Tommy. 

Tommy

These two adore each other and it's an absolute joy to watch them together.

Love

Tommy was SO excited that Uncle "Ham", his godfather, was visiting.

K and Billie

The trip was a success. A big one.

Kiernan Missed Billie!

It feels like a personal victory for me to begin traveling again after all of these years; to have a partner I can trust to take care of me fully and completely; to overcome my anxieties about sharing closer quarters with others, especially those I don't know; and to manage so well energy-wise for a the weekend.

When I got home I was pooped, but I still went over to Dad's house that evening to celebrate Father's day by watching the NBA Finals together. Warriors lost. :(

I woke up on Monday able to go to my PT session AND puppy class that evening. I didn't really take a day to recuperate or rest at all!

Billie Stole my Heart

It feels like a victory in our relationship to be able to travel together; to be able to negotiate what I need and make it work; and to have a partner who is so accepting of my illness. 

Me and Billie
I SO Wanted to Dognap Her! :) 

I spent my 18th anniversary of getting sick in Baltimore with Kiernan, enjoying the Inner Harbor, meeting Tom, Jenny, Tommy, Danny, J.P. and Billie, eating delicious sushi for dinner and enjoy the gorgeous weather. I slept through the noise of three boys running around the house. I came home tired, but didn't crash out.

I faced my fears surrounding travel, sharing tight quarters, meeting people I don't know, traveling without my mom around, and managed just fine in a house with three active little boys.

Thank you to Tom, Jenny, Billie the Pit Bull and the boys for hosting us. I know it's a lot more work to have me as a guest than a healthy person. I appreciate all of the planning you and Kiernan did to make this visit happen. It's so important to me to be as much a part of Kiernan's life as possible, which includes getting to know those he loves most.

This June 18th was all about LIFE and LOVE. It was a victory.

Blessings, 

Emily

Monday Dog Blog: Big Girl

Tovah Rose Happily Napping

When Tovah Rose turned four, something big happened. 

She suddenly realized that she could jump up on the sofa. All. By. Herself.

Ahhhhh.....Is Someone Going to Give Me a Pedicure While I'm Here?

Before this spring, Tovah Rose would look at us pitifully until we lifted her up onto the sofa with us, whereas Gershwin has always been able to easily jump up on the sofa.

Hiding

I think she got so excited about bunnies and birds outside that she realized in her excitement that she could jump up all by herself.

Now, I find on one of the two sofas 'just because she can'. :)

She can spend HOURS just watching the world go by, but she can also just chillax. (Note the photo above in which she was so nestled into the sofa I could barely find her!)

On the Lookout

Now that both T and G like the back of the sofa so much, I'm not sure how these sofa cushions are going to hold up!

All I know, is that Tovah Rose is all grown up now that she can jump up on the sofa all by herself!

Blessings,

Emily

18 Year Anniversary: A Whole New Life

All Photos: Taken October 2015 in Our Yard for 40th Birthday by Neighbor/Professional Photographer

Here I am, marking my 18th anniversary of getting sick. 18 years on June 18th.

How do I even begin to share all that has transpired over the past year since my last anniversary? 

On every level, life has changed dramatically in the past two years.  I'm so immersed in my new life that I have not taken the time to write as the journey has unfolded.

As I prepped to write a post tonight on 18 years since I first became sick, I re-read posts from years past. 

That was hard. Really hard. 

Just three years ago, I was trying to accept that illness--serious, chronic, life-altering, life-limiting, and painful--would be my norm forever. I was trying to accept that I had reached my highest possible level of functioning. I was trying to accept that every day of my life would involve physical and often emotional suffering.

I wrote:

I am to the point now where I have been sick for so long that I no longer remember the feeling of being healthy or alive in my body. This loss of my ability to summon an image of myself dancing or running or reading or easily engaging in an activity is a strange feeling. It's a large part of what has lead me to a journey of embracing my life as is, living my life with joy as is, accepting my life as it is now, and carving out a life filled with the things I can still enjoy--no matter how simple those joys are.

Wow.

My heart breaks a little reading that tonight. 

My posts from anniversaries past are dominated by the theme of balancing grief with gratitude, and while I often tried to keep gratitude at the surface, some years grief won out. 

In 2015, when I wrote the above paragraph, I made a Herculean effort to get dressed up, put on make-up, get my hair cut and engage in some activity that brought me joy. I mentioned how difficult I found feeling and finding a sense of femininity within the constraints of chronic illness.

With Tovah Rose

By my 16th anniversary, I was able to say that healing had begun. By 17 it was in full swing.

By 18, it's unbelievable. 

I can say that changes are happening monthly, weekly and sometimes daily. 

I so often remark on what I've been able to do in a day. I'm in awe. 

Getting dressed in cute clothes, doing my hair, putting on jewelry and make-up are now just part of my day. So is getting a haircut. They are no longer the 'main event' or something that cannot even be done.

With Gershwin

This year, on my anniversary of being sick, I think what strikes me most powerfully is the overwhelming sense of gratitude that far surpasses the grief in my life. 

I am also struck daily by the ABSENCE of suffering in place of what had become an almost constant level of suffering. Suffering is no longer a daily constant, but rather an intermittent occurrence. I can engage fully in activities without being overwhelmed by feeling unwell.

With Tovah Rose

Am I still sick? Oh, yes. Indeed. 

My life is still rigid and structured around what I need to do to maintain my health, to improve my health, and to keep symptoms under control. This includes strict medication regimens, PT, massage, acupuncture, dietary restrictions, naps, extra rest and sleep and exercise. 

I'm still limited in what I can do, most strongly by fatigue, the length of time I can stand or walk and difficulty concentrating.

Do my limitations still make me sad? Yes. 

Do I still grieve? Yes. 

Am I scared that maybe this period of increased wellness won't last? Absolutely.

I have spent the past year saying Yes! Yes! Yes! to doing, doing, doing, when sometimes I need to be saying Yes! to simply being. Saying No! to doing doesn't mean I'm not saying Yes! to life--it means I'm honoring the complete experience of life.

But that's very, very difficult after 18 years of having to say no, simply because no other option existed.

The way I'm living my life right now--busy, busy, busy--isn't exactly sustainable. But it's also what I believe to be a natural reaction to feeling that the world has opened up to me again.

Finding any sort of balance when the everyday norm I experience is changing so quickly has proven extraordinarily difficult for me.

With Gershwin

I will never get back those 18 years that I spent mostly homebound, and sometimes bed bound; those years during which I grieved so deeply it physically hurt as I watched my friends marry, have children, start careers, buy houses, go to grad school, travel and grow into the adults they are today; those years when I felt like an observer, like an outsider looking in at a world that was not mine; those years that strained my parents hearts so deeply; those years when suffering was the norm almost every minute of the day.

Today, I try my hardest to live in a place of hope that I will not, for some reason, go back to that life again. I know this illness and its cruel twists and turns--I watch it in myself and I watch it in those I love who also have it.

When I almost breeze through a day now, I wonder how I managed year after year suffering the way I did. How did I survive that? It's terrifying to think of going back to that state of being, and how it felt to be that sick is still fresh enough in my mind and muscle memory that I can easily be paralyzed by the awfulness of it all.

As cliche as it is, there are no guarantees for any of us, chronic illness or not, so I work to embrace this incredible gift I have been given to live a life in which I can feel alive in my own body. My path to wellness seems as mysterious as my path to illness. I am, quite simply, very lucky.

On this anniversary, I celebrate life. I say, "L'Chaim" (To Life in Hebrew). I marvel at the symbolism that the number 18 (and multiples of it) is used to represent life/Chai in Jewish tradition, while I mark 18 years on the 18th. 

Playing in the Sand at Sunset Beach 2016

I thank G-d that somehow I've come out of this past 18 years able to embrace life and joy easily, readily and quickly. When it comes to my illness, most days are filled with gratitude, joy, and happiness rather than the pain of grief. My spirit still wants to dance.

I thank G-d that I remain surrounded by friends who have journeyed with me and parents who have never given up on me, because that wasn't an easy task for any of you to do for so many years.

Blessings,

Emily

Love and Illness: 18 Months

Anniversary Dinner Out

Happy 18 Months to this guy! :)

In My FIRST and New LBD

I'm feeling pretty sentimental about this anniversary.

WALKING For The First Time Through the Marsh

On the 18th of June, I will mark 18 years since I got sick. 

This June 8th, I celebrated 18 months with Kiernan.

Eight is my favorite number.

18 is often equated with Chai (life) in Hebrew.

Our Newly Planted Lettuce (Which Has Now Been Harvested Twice!)

Over the past six months, Kiernan and I have celebrated milestone after milestone together.

We celebrated the holidays together, and I decorated my first Christmas tree since I was in high school.

We thought our tree looked fantastic!

We've gone on so many more outings than we could when we first started dating, including one to see Hubbard Street Dance of Chicago.

We went to an LGBQTA Passover Seder together that our friends hosted...

To one of our favorite parks...

and to the arboretum...

where we tip-toed through the tulips holding hands.

Our relationship, my life and our life together continue to grow and bloom and open and change just like this water lily. Sometimes things are really hard. We have plenty of growing pains. But we are also committed and loyal to each other.

We now walk through the places we used to take the Rolls. We walk through the arboretum. We walk through the marshland we love. We walk through flower gardens. We take walks after dinner in the evenings.

And best of all, we HOLD HANDS. I have missed walking and holding hands!

Kiernan has helped me to start learning how to cook and to learn how to plant and grow lettuce. Thanks to a friend, we had a week free of Blue Apron and Plated, which made starting to learn to cook (without having to stand too long) possible. Cooking together makes me so happy, and is something we both love. It's still a lot for me, so most of the time Kiernan still cooks for me (I'm SO spoiled!)

This past weekend, *I* drove us from place to place, giving Kiernan a break. When I asked if it felt good not to always have to drive me now or do this or that for me, Kiernan just gently reminded me that he never looks at it as an inconvenience or chore.

Knowing that he truly loves me in SICKNESS and improving HEALTH is reassuring, because I do know there are no guarantees with this illness!

I continue to be grateful to be with this kind, gentle, compassionate, respectful, loyal, committed, smart and funny man with whom I share common core values and common interests. 

This new life is beautiful. Sharing the journey to wellness with someone who fell in love with me while I was much sicker makes all the milestones even more special.

Thank you for journeying with me, Chef, and for rejoicing along with me in the milestones.

I hope we are just beginning a lifetime of walks together hand in hand.

To Life, indeed!

Blessings,

Emily