Gutted

All Flower Photos From Our Yard
Dahlia

Some things in life cannot be fixed. They can only be carried.

--Tim Lawrence-- 

Zinnia

Other than a handful of posts over the past year, I've written very little and have mostly stuck to the more fun Monday Dog Blog posts. 

Where have I been this past year? Why haven't I been blogging?

I've been hiding.

I've finally gotten the courage to tell the truth. And it is not easy to read. Or write. Or short. But it is here for you to sit with me and to acknowledge. 

The strength to tell each person I love individually the truth? It's not there.

The truth:

I've literally been gutted by grief.

Gutted.

And I'm not sure where to go with that grief.

Over the years I've grieved a lot. I've grieved the losses that accompany illness. The loss of dreams. The loss of becoming a mother. The loss of marriage. The loss of career. The loss of the ability to travel. The loss of things big and small.

In the past two years, the cumulative griefs I have experienced and the ways in which they have unfolded have left me navigating new waters, struggling to find my footing again, and unsure how to even write fairly and honestly about my grief without hurting anyone involved.

This will be *my* story. My perspective. My grief. 

Until I walk through this grief that I have worked so diligently to avoid, I will never find my way. A large part of writing this blog is to be authentic and vulnerable, not only about what it means to live with a chronic illness, but about what it means to simply be alive.

Like illness and disability, grief does not discriminate. 

Zinnia

Grief is brutally painful. Grief does not only occur when someone dies. When relationships fall apart, you grieve. When opportunities are shattered, you grieve. When dreams die, you grieve. When illnesses wreck you, you grieve.

--Tim Lawrence--

Zinnia

When listening to Tim Lawrence's audio version of his blog post (sent to me by a friend) entitled Everything Doesn't Happen for a Reason, I sat, tears streaming down my face, saying to almost every sentence: Yes. This. Yes. This. Yes. Yes. Yes. And Thank You. Thank You for putting into words what I could not.

Here's the thing about grief. It's cumulative. It's always reinventing itself. It's always catching your breath just as you're trying to finally get a full breath of air. It's persistent as hell. It's impossible to avoid even when we do everything we can to do so. And, as Megan Devine would say, It's visceral, not reasonable.

Zinnia

What am I grieving, you ask?

With my health the best it has been in almost two decades, it might seem difficult to understand why I might be consumed by grief or why this improved health isn't enough of the buoy I need right now.

Moth on Zinnia

I have waited a very long time to share what I felt I could not share publicly because I continued to wait for a resolution. Not sharing the truth about what has been going on in my life has left me feeling alone and isolated.

So, while my heart flip flops as the keys click, I know I must share.

Five things have left me gutted in the past two years.

Moth on Oak Leaf Hydrangea

1. A little over two years ago, I lost the most significant friendship of my life. My best friend of 27 years and I had a falling out that has left us living in the same town, splitting up friendship circles and lacking civility or contact between the two of us. I have waited this long to share because I continued to hope for a breakthrough. Again, I want to be 100% clear that this is my story. Not hers. 

What I now painfully realize is that I will never have the answers. I will never have the answers to why this friendship ended or why it could not be repaired. Not having the answers sucks.

For me, the greatest sadness is that an action on my part was enough to seemingly erase the totality of  the 27 years of friendship we had shared. No apologies, no attempts to reconcile, no olive branches have worked. 

A part of me believed that if I apologized in just the right way, even if it was on my 100th try, it would work. I believed that 27 years of love, loyalty and faithfulness to one another would mean that my perceived wrongdoing on her part would be forgiven and sorted out.

My confidence in my ability to be a lifelong friend has been rattled to the core. My faith in what it means to commit to being friends by chance and sisters by choice has been shaken. 

I never wanted this friendship to end.

Losing this friend has been like a death to me.

A death with no answers and no closure.

Gerbera Daisy from Marge

2. The loss of my committed relationship. The loss of the hope I had for the future of this relationship and my life with this man. The loss of trust that has come from the ashes of what turned out to be a break up full of betrayal. 

So. Much. Betrayal.

Again, I finally understand that I will never have the answers.

Very few people knew how committed the relationship was or the level of work that went into saving it--including several months of counseling. The room was painted and ready for my ex to move in. The amount invested in the relationship was tremendous.

To leave it--to end it--felt like calling off an engagement or a wedding.

I will never know the why behind his behaviors. I will never know the reason things had to turn so terribly sour. I desperately wanted civility.

We live in a small town and I feel like I'm going through a divorce. 

The gossip. The knowing too much. The avoiding awkward encounters. 

The collateral damage. Oh, the collateral damage. That blindsided me.

I do not grieve the choice to leave. I only grieve that I stayed too long with someone who was incapable of being a present partner, of truly committing to me, of telling the truth, of fighting at all for me.

Why did I stay? How did I allow this to happen to me? Or rather, how did this happen?

I grieve for losing sight of who I was and what I deserved. I grieve for giving up who I was to try to save the relationship. 

I grieve for the exhaustion of being in a relationship that took and took, and the energy it required to extricate myself from it.

I am utterly exhausted still.

So much of why I stopped writing was because every ounce of what I had was either going into 1. trying to save the relationship, 2. trying to extricate myself from it, or 3. recoveering from the exhaustion of the first two items.

Vinka

3. Of the griefs I'm experiencing, the most difficult to face is the finality of knowing that I will not realize my dream of becoming a mother of my own biological child.

During those quiet months when I wasn't writing, I had been on a path that lead me *this close* to trying for a child.

Yes, *this* close. On the precipice.

We had met with all of my doctors, including a three hour appointment with my specialist. Every doctor was on board. I had a point by point plan to go off of medications, track how my body responded, figure out what we would do if I crashed after the baby was born. My parents and I had made financial, physical and emotional plans to manage the addition of a baby to our family. I had spent endless time talking to friends and counselors about the decision. 

We had a plan in place. I'm a planner. I'm into the details about a decision like this.

I had stopped the pill.

When my first period happily and easily appeared six months later, my prolactin levels had normalized and every period since then came like clockwork, I couldn't help but feel the universe was reminding me that my body was ready, but my world was not.

We knew it would be hard on us as a family to bring a child into the world. But it was a risk we felt willing to take. Because we knew that child had stability, security and love waiting even if mama lived with a chronic illness.

Whether you've read my blog or known me for a long or a short time, you know that becoming a mother was what I wanted so badly it physically hurt. 

Physically hurt. 

Take my breath away hurt.

Gasping for air hurt.

Unable to look at the pictures of your children hurt.

Sobbing ugly cry hurt.

Desperately wanting to be part of your children's lives hurt.

Confusing and conflicted hurt.

In the end, I chose to leave my relationship even though I knew it meant giving up trying for a child.

Yes, there is a certain relief in that. I saved myself a lot of heartache. I saved my potential child from being with a father that could not be present. I saved that child from what probably would have been a relationship that ended in divorce.

It was 100% the right decision. But doing the right thing is often the hardest thing we will ever do.

I've grieved the 'mom thing' many times over the years in different ways. What made this time the most difficult was the finality of it and the fact that I felt like a horse lead to water who wasn't allowed to drink.

I was *so* close, and my partner lead me to believe we were *that* close.

Why did we get so far before he told me truths (betrayals?) that meant having a child was impossible?

Please, as you sit with me in my grief over not becoming a mother, don't tell me 'there are many ways to become a mother,' or 'you can do it on your own,' or 'you can adopt,' or 'maybe you can still have a baby,' or 'you can freeze your eggs.'

I just need space to grieve.

And I need and want to live in reality. 

I am chronically ill. I cannot adopt. I cannot raise a child on my own. I cannot go through the medical interventions of freezing my eggs. I cannot afford many of them, and let me tell you, I've looked, and I'm not sure how a person with a disability gets a baby.

The other reality is that I had my window.

I am ready to move on to a life without a biological child. Having a child and wanting a child were right for me a year ago, and would have been had I been healthy years ago.

What was right for me before is no longer right for me now.

But fuck, I still grieve this baby thing more than anything else that chronic illness has taken from me.

 I don't want to rush into a relationship in order to try for a baby, I don't want to take the risks of the chromosomal abnormalities of an older mother, and I don't want to become a mom just as my parents need me more.

I'm pretty risk-averse, and I'm not someone who will have a baby at any cost.

I know that the grief of my lost relationships will be easier to heal than that of the desire to become a mother. 

This grief will live within me, manifesting itself in different and unpredictable ways, for the rest of my life.

Oak Leaf Hydrangea

4. That bugger of a chronic illness thing. 

I couldn't understand why, in spite of continuing to feel better (with lots of ups and downs), I no longer feel contented with the improvements, feel disappointed and impatient for more, and continue to grieve what I still cannot do. 

Apparently, this is a fairly common frustration and reaction when we so desperately miss our health.

It seems the initial euphoria of: "I can do this! And this! And this!" has gradually worn off, and the reality remains that chronic illness, in many ways, defines and decides my life. 

So, yeah, oh, I'm still chronically ill. 

It's difficult not to become weary of the constant monitoring, hyper-vigilance, and awareness of consequences to small diversions from following the regimen needed to maintain stability of some sort. 

When you tire of my illness and hearing about it, remind yourself that I try to ask you to sit with me in it for small amounts of time. You can leave at any time. 

I can never leave it. I can never take a break.

This new life, this one that leaves me functioning at about 60% of a healthy person, is still one that leaves me grieving. Every day.

The cumulative loss of 20 years of chronic illness is enough to bring me to my knees. 

Oak Leaf Hydrangea

5. The election of Donald Trump as president. Hillary Clinton's loss. The constant chaos that consumes our country daily with this new president. The division, the hatred, the anti-semitism, the attacks on people with disabilities, the threats to healthcare--including my own. The efforts to take away the requirements that the ADA put in place for people. The constant barrage of hurting the most vulnerable members of our county. The constant wrecking ball that seems to be our president. 

I was never afraid to go to synagogue before. I didn't worry that we'd go backwards with disability rights. I didn't worry about losing my healthcare.

I've never felt so embarrassed to be an American or so aware of being white. I've never felt so 'other' as a Jew, as a woman, as a person with a disability, as a Medicaid recipient. I've never felt so vulnerable to the whims of a president and administration who lacks empathy and restraint.

Having so much chaos in the country on a daily basis makes it difficult to calm the internal chaos of my own life. 

Chaos within chaos.

I am one of the 'liberal snowflakes' who has been deeply affected by the state of our country. I know many others who are able to disconnect from it. I cannot. I am a true communitarian. A true bleeding heart liberal.

When others are suffering, I feel it deeply. I feel it in our country in a way we've never had to face in my lifetime.

My life changed the day Hillary lost. 

I've coped by fighting like heck with my limited energy for healthcare--by sharing my story, by planning an event to educate the public, by talking to policy organizations, by meeting with our Congressman three times, by getting ready to support someone who will run against him.

I grieve. Simultaneously, I #resist.

I am exhausted.

Bee on Zinnia

Grief is woven into the fabric of the human experience. If it is not permitted to occur, its absence pillages everything that remains: the fragile, vulnerable shell you might become in the face of catastrophe.

--Tim Lawrence--

Now, it's time to grieve fully.

The only way through is through.

Because I've spent the months since the break up running from the grief, I've mostly been staying too busy and sometimes wrapping myself up in a cocoon.

I don't know what the through is going to look like yet. 

I've got my counselor. My puppies. My parents. My friends. 

And I will be making the space I need to grieve. I won't book every moment of free time with activism and advocacy. 

I'll leave it to open for time to be in nature, to rest, to write, to read, to just 'be' in it.

I'll also get back to working on improving my quality of life and health--by seeking out the things I've put on hold--yoga, new PT techniques, new food options, new medications.

 I'll work hard to trust, as my friend Susannah says, that my friends will be waiting for me on the other side. I know that if I do not go through this grief, I have nothing in me to give. 

I'm out of spoons, marbles, gas, emotional energy--whatever you analogy you want to use.

I am gutted.

Zinnia

I've been gutted before though. I'm like the lotus flower. I always find my way out of the muck and mud and find something beautiful. 

Things just got a little muddier and muckier than I could quite handle all together. 

I even held off on writing about my grief because I thought about how much other people are suffering *compared* to me. It's good we have therapists and counselors and friends to tell us to basilica shut up when we get this way.

Because grief is visceral.

It will grab ahold and not let go until I find my way through.

To find the light again I must go through the grief. 

And then:

The choices as to how to live; how to carry what we have lost; how to weave a new mosaic for ourselves? Those come in the wake of grief. It cannot be any other way.

--Tim Lawrence-- 

As Tim Lawrence would say, I didn't need these griefs to create positive change in my life, or to become a better person, or to make lemonade out of lemons. I was just fine trying to live a good life before grief after grief hit.

 Let's let go of the platitudes and myths that surround suffering, loss and grief, recognizing that sometimes these griefs cannot be made into a sunflower soaking in the sun's rays, but instead make us turn away from the sun. Lawrence writes: "While so much loss has made me acutely aware and empathetic of the pains of others, it has made me more insular and predisposed to hide."

My new mosaic will be filled with cumulative griefs that cannot be fixed. They can only be carried.

 And while I have experienced positive change as a result of illness and loss, I, too sometimes feel the inclination to hide.

Blessings, 

Emily

Quotes from Tim Lawrence from his blog post Everything Doesn't Happen for a Reason

Quote from Megan Devine's website Refuge in Grief