I Can See Clearly Now

Sitting down to blog feels like home. Why do I wait so long to make time for this little place I love?

The last few times I wrote, things were hard. Really hard.

We finally figured out that the clonidine was causing my depression. Having a medication alter my mental well-being so powerfully is confusing and disorienting. I can use all of the tools in my toolbox to claw myself out of depression to no avail. I was at the beach--my favorite place--and I could not enjoy it.

Now that I have weaned off of this medication my mood is back to my 'norm' and I feel like myself. 

Whew.

Not only do I feel like myself again, I find myself in a new and better headspace as I approach my 20th anniversary of getting sick.

I may be sick. I may have very limited functioning. I may be at about 40% right now.

But in the midst of all of this, I've found a new and joyful light.

My life is full. My life is good.

I have a beautiful life filled with things I love.

It is filled with people I love, the dogs I love, and a more clear focus on my passions than I have ever had before. I'm also supported by a tremendous medical team and I am cared for by a tireless caregiver. I live with all of the comforts I need at home, including good food. :) 

I find myself feeling the abundance in my life. 

I still struggle to accept and recognize that the 'medical grind' will simply be a part of my every day life. Always. I want to stop pushing back against it all of the time, wasting my precious energy on something I cannot control. 

With me, it will always be something. When I think I can come up for a breath, something else pops up. That's not being negative. That's just the reality. It's time now to allow for the space and the acceptance that maintaining and managing life with chronic illness is time-consuming. 

It takes away from the time I have to be with my friends, family and passions.

The precious energy I do have left after my medical needs are met and I *try* to keep up with mundane tasks of life is spent on the things that matter most to me.

This has meant saying "No" to a lot more things so that I can reserve the limited energy I do have for friends, family, fur-babies, Rowe's Research Runners, writing and activism. I also need time to rest with TV or listening to a book. I also need my spiritual fix--in nature or at synagogue. 

I feel more focused and clear about where my limited energy must go. I still struggle to fit in what I need to nourish myself physically, emotionally and spiritually no matter how much I feel like I have cut things out and honed in my priorities. 

Living (with or without chronic illness) is always a journey and a process. 

Being able to find my way with a clear head, out from the cloud of the depression from the clonidine, leaves me feeling that as I ready to mark 20 years since my life changed so dramatically, I'm in a place of more peace than I have ever been.

There will always be grief and pain on this journey. 

I'm not going to sugar coat that.

What I will do is see clearly how beautiful and full my life is in spite of its challenges.

Blessings,

Emily

Babies Part I: Am I Still Waiting for Daisy?

“I beg you, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”

― Rainer Maria Rilke, Letters to a Young Poet

Shell on the Beach

Until now, I have not been ready to write about what has transpired in terms of the possibility (or not) of becoming a mother.

This will be the beginning of a series of posts that attempt to 'live the questions' that have been part of my life for many many years, but that have changed in nature recently.

Beach Day, February 20th, 2016

Over the years, I have written extensively about my aching desire to be a mother and the loss of this dream.

In 2008, I wrote the post Waiting for Daisy.

In it, I wrote:

Waiting for Daisy is a book written by a woman who endured six years of fertility treatments before becoming pregnant. Later, she wished that she had been able to enjoy her life as it was rather than waiting for her happiness. She wished, as my friend Tess wrote, that she could have told herself,"This is your life, whatever happens." Not "This is your life, but only if you have a baby."

I'm also trying to figure out how one finds the balance between holding onto dreams and letting them go. How do we decide when it's time to let a dream go? How do we, while holding onto a dream, still live our lives to the fullest? If we can't have the dream we want the very most in the whole world, how do we re-frame our life? How do we live a meaningful life in spite of whatever happens? How do we let go enough to just 'wait and see' if the dream unfolds or not?And accept whatever happens?

'

Almost eight years later, I am still struggling with many of the same questions.

Except that my health is different now. And I'm in a committed relationship.

This opens the door to ask if "Daisy" (a child) is still a possibility.

Just last year, on my anniversary of getting sick, I wrote:

I Feel Sad About Babies.  I still feel sad about not being a mom. Some days it feels like a cruel joke that so much healing is occurring at the end of my childbearing years.  This is made even harder when I look into the eyes of the man I love and think about how I had always dreamed of having a child together with my life partner. I am keeping my heart open to what life has to offer in the way of children. Adoption. Or maybe no children at all. How far can my healing go? Can I reach a point of being well enough to care for a child (with the help of a village)? How much can I ask of a partner? Of family and friends? I don't know. I'm still not at peace about this part of my life. Just today, I read David Brooks's editorial piece Hearts Broken Open, in which he discusses finding life's meaning. "I was struck by how elemental life is," he writes. "Most people found their purpose either through raising children or confronting illness and death." Even my Ph.D. pioneer of a mom would say her greatest accomplishment is having me.

Oh, the questions. The aching, raw, emotional, overwhelming, terrifying, exhilarating questions.

Am I still waiting for Daisy? What does a meaningful life look like without Daisy? Have I already found my meaning through illness, as David Brooks mentions? Is Daisy a possibility now? How do I live in the present and enjoy it for what it is? If Daisy is a real possibility, is it still what I really want?  Will it ever not hurt to miss out on motherhood? Will the ache ever go away? Would a life without Daisy actually be a better choice?

This is my life, no matter what happens. I want to be at peace with that.

Blessings,

Emily

Monday Dog Blog: Filling Our Souls

Happiness

I've been feeling worn down lately. I feel short on patience and low on compassion. I feel creatively blocked and spiritually empty. Some of my relationships are shifting. I'm tired of non-stop medical needs and appointments. I've been feeling lonely. I'm frustrated that, after having such a special Spring and Summer health-wise, I haven't been able to return to feeling that way since the reunion.

We're Ready to GO!

I'm sad that every time I think maybe I've really turned the corner, there's a setback that shifts things again. I struggle with the transitions, the ups and downs. I've never been one who likes change. And how I fill my soul changes depending on how I'm doing physically--and sometimes it's hard to figure out what I need.

Look Mommy! We Can Swim!

My blog posts have all been cheerful and positive because I haven't quite known what I wanted to say. I recognize how much better my health is now than it was a year ago. I don't want to sound ungrateful. I'm certainly savoring the wonderful things that are happening and that's why I'm sharing them with my readers. 

Showing Off His Doggy Paddle

I just think that sometimes I forget, and others forget that, even at my 'best', every single day is hard, and every single day is much, much different than that of a healthy person. By now, I thought that I would have bounced back from the reunion. The fact that I haven't means that perhaps other variables--ragweed season, medication dosing and changes, physical therapy--are aggravating my symptoms. 

Swimming Area

There's always a price to pay--after the dinner with Jeannine, after the Labor Day picnic, after this outing with the puppies. I'm always acutely aware of time--I never get lost in time--because there is always a medication to take or a set of symptoms (sweating, forceful heartbeats, pain) telling me what time it is--time to stop, time to rest, time to recline. 

Swimming Area

I miss getting lost in time. 

Getting On Our Zen

A couple of weekends ago, when our neighborhood book club met at my house other members of the group got lost in time. We were all chatting, sharing in beautiful ways about our lives--and in particular about art. At 5:00 one member said: "Ohmygosh! How did it get to be 5:00? I had no idea what time it was!" The rest of the group said the same.

Fresh From His First Real Swim!

A little part of my heart broke. I thought: I've known since an hour into the meeting (2:30) what time it was because I needed meds or because I was having symptoms. By 5:00, I definitely knew what time it was. But I didn't want to say anything because I would rather feel sick and be a part of the conversation that was happening than break up the meeting.

The View

I don't like when I am like this--when I am short on compassion or patience for others, when I am sad or lonely. I am someone who doesn't make sure her own soul is full before emptying it to others. This is a familiar tune to most of the women I know. 

I also recognize that this seems to be part of who I am--these cycles of ups and downs. Cycles of grief. Cycles of health changes. Cycles of loneliness. Cycles of sadness. Cycles of feeling a bit in flux. Cycles of finding my way.

Mom Gets Her Zen On

While I am not a Christian, I find the analogy of Jesus taking long periods of time away from helping others to be alone and pray a powerful one. While he helped many, he also took long periods of time alone to pray and fill his own soul. I figure if Jesus needed that, we all do. It's learning to do this that's hard--and letting go of feeling selfish when we do it.

I also just need to schedule in time away from the endless medical appointments and demands. 

My Sweet Boy

Sometimes what makes us content or happy, though, is right there, surrounding us. What makes me content is time in nature with Mom and the puppies. This has remained a constant for me throughout my illness--Mom, nature, dogs.

A Kiss From G

On Saturday the four of us went on a big outing to a State Park to spend some time filling our souls.

We drove to a park about an hour away. The puppies were very excited to go on an outing, but Gershwin was less excited once we hit the gravel road and his carsickness set in! Poor guy. 

Mom and G

I've been wanting to take Gershwin and Tovah swimming and really introduce them to water beyond the baby pool, hose or edge of the ocean. This park has a little swimming area and both puppies showed us how they can swim! We had so much fun!

So Sweet

Other than a little swimming, we spend out time eating a picnic lunch and just hanging out by the lake, taking in the beautiful water, forest and sunshine. We were able to stay for a couple of hours, which made it feel like a true break from things at home, text messages, and life.

Path From The Beach Area

We were all very tired from all of the fresh air, new sights and sounds, and long afternoon. :)

We felt content. 

Tovah Rose Konked Out On the Ride Home!

We hope the Fall brings more weekend afternoons with weather perfect for trips to the parks in the area. All summer long we've had glorious weather and kept putting off these trips. We'll be trying to make time for more this Fall.

I'm In My PJs and Tovah Rose Is Blissed Out

With each change in my health--whether an improvement or a setback--I struggle to figure out what will most nourish my soul within my physical limitations. We've found that no matter what state of well-being I'm in, if I'm at a park--with the dogs and with Mom--I can find contentment and peace.

The rest of me? It's a work in progress. But I have two little helpers reminding me how life is all about the simple pleasures, living in the moment, and taking time to have some fun. 

Happy Monday!

Blessings,

Emily

Solitude: Our Little Home At The Beach

Camellia Flowers Blooming Along Our Walkway

"Solitude is the only acceptable form of Selfishness."

--Anna Quindlen--

Welcome to Our Little Home at the Beach!

Typically, I'm a pretty extroverted person. Or maybe I'm more of an 'ambivert', as the Myers-Briggs suggested during my senior year of college. I tend to be energized by socializing, and seek out social engagement as much as I possibly can, even when I'm homebound. 

Such a Cute Little House!

Here at the beach, though, I've found myself craving solitude. 

While Out On a StRoll I Took This Photo of the Backside of the House and Golf Course

We've been here a month now and I'm still enjoying the quiet. 

I'm not lonely.

 I'm not missing lots of socializing.

View Out of My Bedroom and the Living Room

At home, I became increasingly tied to my iDevices, as most of us are--checking my phone immediately upon waking, texting friends late at night. I was also just very busy given my energy level--having appointments every day, working to plan our 20th High School Reunion, trying to engage in more social events to meet people, etc.

More of the View From the Back Porch

Here, I've been putting my phone in airplane mode at night so that I can't check it when I wake up to pee at night or when my alarm goes off! I'm turning off the ringer earlier so that I can listen to my audiobook uninterrupted. 

Kitchen and Living Area

I get that all of life can't be lived in vacation mode, but I do think certain practices cultivated during my time here are ones to keep upon returning to the daily grind at home. 

Living Area

Instead of emailing and texting, I've taken a moment to write a piece of snail mail if I want to reach out. 

Dining Room, Where I've Felt Well Enough to SIT UP for Lunch and Dinner EVERY DAY!

I feel a little guilty about being less available, less frequent about checking in on my friends, and being more 'me' focused. I've mentioned before that I feel guilty about even having the opportunity for this six weeks here at the beach.

Screened In Porch--Mostly It's Been Too Cold to Enjoy It!

When I woke up today, I was feeling a little blue--it's gray and dreary today, I didn't sleep well, and I'm not feeling very well. Even here at the beach I get sick and tired of being sick and tired!

I checked in on a friend's blog, where I read her statements of personal growth including:

Never Justify My Decisions to Anyone Else

My Bedroom (and the Puppies too!)

I'm a 'justifier'. Constantly. And it's exhausting. 

Mom's Bedroom

While here at the beach, I've been trying to stop justifying and simply appreciate this gift of six weeks of solitude. I heard Anna Quindlen's quote just as we were beginning our vacation here. Good timing, eh? 

Upon hearing it, I knew that this time of solitude here at the beach is to be fiercely guarded and protected.

And that is just what I have done.

Guest Bedroom

And what a wonderful place to seek solitude. 

I am posting some photos of our little home here at the beach that I took as well as photos from the VRBO website. 

The Street. Our House is On the Left.

We had no idea if the home we chose online would be as it was pictured, but it was! We love everything about the place we chose. It's just the right size, warmly and restfully decorated, clean, and very comfortable (yay for a super mattress!). Other than bringing in a rented recliner, which was an expensive but very worthwhile decision (I'm in it right now as I type this!), the house was exactly what we needed and wanted.

We Love it Here

We have loved our time here so much, that we have decided to come back next year for six weeks! We just missed out on booking this same place again, but found a condo in this development. Our hearts are with this place though, and we hope we'll be back. 2016 maybe? :)

Right now, in this moment, we have two more weeks of solitude here.

"And don't we all, with fierce hunger, crave a cave of solitude, a space of deep listening--full of quiet darkness and stars, until finally we hear a syllable of G-d echoing in the cave of our hearts?"

--Macrina Wiederkehr--

Blessings,

Emily

Cultivating Gratitude

Spring Plantings

When November rolls around, many of us start posting on Facebook our 30 days of Thankfulness. Last year, when blogging was more difficult, I really enjoyed taking the time each day to publicly post a source of gratitude.

This year, I have decided to try to blog as much as possible about the many amazing things (big and small) that have happened over the past several months--things that I have yet to blog about and want to before year's end. They are things that have brought me so much joy and for which I am GRATEFUL. 

That Turned Into This!

I can definitely whine, complain, cry, be angry, be sad, be overwhelmed, and be everything unpleasant that comes with both being human and being chronically ill. Still, in the midst of all of these times, I typically maintain a deep sense of gratitude. 

I remember the day I left the hospital after my gallbladder surgery. I've never felt more like dying than I did that year. As we left the hospital parking lot, I said to Mom: look at that beautiful sunset.

She said to me in return: it's amazing that you are even able to notice that in the midst of how awful you feel.

Our Yard

I speak often and openly about how blessed I am. About the family and friends who support me. Over and over and over again. I'm immeasurably blessed. Every. Single. Day.

Sedum in Fall

What I've just recently learned, however, is that with this gratitude often comes a sense of feeling guilty or like a burden. 

For example, I might use the following sentences:

I'm so grateful that my Dad and Abbie provide so much financial assistance, BUT I'm so sorry that I have been such a burden to them and that they have to do this at all.

I'm so grateful that my friends sent me so many wonderful cards and gifts for my birthday. Did they do this because they love me or because they feel sorry for me? 

I'm so grateful my mom is my caregiver and my best friend, BUT I wonder if she would be happier if I wasn't around? If she didn't have to take care of me? I feel guilty that my illness so deeply affects her quality of life.

I'm so grateful for all of the amazing comforts I have in life, BUT I feel guilty that I have these things and others do not.

I'm so grateful for my medical team, BUT I feel guilty that not everyone has the same team.

Yeah, you get the gist.

New Oak Leaf Hyndrangeas

My therapist said to me: Emily, if you spend your life thinking this way, you are screwed! :)

Bottom line: I must embrace gratitude for gratitude's sake. 

Feeling guilty or burdensome are not part of gratitude.

Pretty at All Times of the Day

After 15 years of being sick, I've experienced more kindness, more receiving, more generosity than can ever be repaid. 

I feel that I could write a thank you note every single day and never thank all of the people who have touched my life, gone out of their way for me, helped me, gifted me, or been kind to me. Most of the time, thank you notes don't get written. Oftentimes, the most generous of gifts come at times when I am too sick to even respond. Now I do have more energy, but it still usually leaves room for texts and email, over full-blown thank you notes.

I have become a 'receiver' rather than a 'giver'. Our culture does not applaud the receivers, only the givers.

Mom once read a book about a man and his wife, who had MS. She used a wheelchair and he described her as a 'rolling Mitzvah', meaning that every time someone opened the door for her that person was the one who received the mitzvah not her. What did he mean by this? That it makes people feel good to give. That in her own way, his wife did a good deed.

These Canna Lilies are GINROMOUS!

I don't yet know what receiving without guilt feels like or looks like. I don't know that I've fully experienced gratitude if it's always had a 'qualifier' that goes along with it.

My heart is bursting with gratitude, and I want to feel it fully.

I can't think of a better time to learn to do this than now. It is, after all, the month of Thanksgiving and Hanukkah--or as the holiday is being coined, Thanksgivikkuh. Thanksgivvikkuh won't roll around for another 77,798 years. So, now would be a good time to cultivate true gratitude.

A Garden of Gratitude

To start, I'm grateful for this garden patch that Mom and I planted together this year, full of some of my favorite flowers--zinnias, marigolds and dahlias. We filled pots with vincas, pansies, petunias and mums. I'm grateful for a mom who preps the ground and the pots, and a body that allowed me to help with the planting. I'm grateful for the beauty of the garden. I'm grateful that my mom sat on the sofa every morning to enjoy the her well-tended garden. I'm grateful that planting flowers brings me such joy.

Blessings,

Emily