Don't Miss It

As a guest blogger for Eating Recovery Roundup Day, I was asked to comment on the topic #DontMissIt.  

Don’t Miss It 

Miss what?  What did I miss?  I missed so much.  I missed me.

How does one miss oneself?  

I missed the insidiousness of anorexia.  I missed how quickly anorexia highjacked my daughter.  I missed how quickly anorexia made itself very comfortable in our home.  I missed how much anorexia had me by the throat as well.  I missed my family.  I missed our lives before anorexia.

When anorexia first entered our lives, I was blindsided by it’s strength.  It quickly invaded our lives and took the very soul of my daughter.  I missed her.

What I did not realize was how much I would lose me.  How much of me I would miss.  What happened to the laughter, the sarcasm, the happiness that was a part of me?  What happened to the things in life that had brought me contentment and comfort?  My marriage was compromised.  My husband and I were constantly bickering.  What had happened?

What happened was that I missed how much I allowed the eating disorder (ED) to take away from me.  I allowed ED to take away the things I enjoyed.  I allowed ED to drive a wedge between our family.  I allowed ED to isolate.  I allowed ED to call the shots.  I allowed ED to insist we walk on eggshells.  I allowed ED to to make me afraid.  Very afraid.  Afraid to cause a conflict.  Afraid to set boundaries.  Afraid to challenge the very core of the ugly that was present in our home.  

I remember one particularly bad day.  A horrible, no good, very bad day.  I was hosting a pity party for myself and my sister-in-law called.  We talked.  She understands, as she, herself, battled an eating disorder.  I cried and vented and, oh my gosh, poor me.  She listened and then said some very powerful words to me:  “When are you going to stop being the victim here?”  What?  Me?  A victim?  Her words were a huge “AHA” moment.  I wasn’t a victim, yet I had let myself become one.  I realized that I had missed me.  I had allowed myself to be consumed by the chaos.  The chaos had become my normal.

At some point, I decided to stop being afraid.  I was tired.  I was weary.  I was done.  I stopped allowing ED to intimidate me.  I chose not to engage.  I chose not to react.  Choices.  Choices helped me to see what I was missing and ED got angry.  I didn’t care.  

I chose to bring back the “me” I had missed.  I took my power back.  I had missed my power.  I had missed me.  I started to take care of me.  Self care?  That sounded counter intuitive.  It is not.  If we do not take care of ourselves, you will miss yourself.  I sure did.  I realized that by not nurturing my own soul, my own wishes that I was giving so much to ED.  Self care was difficult to define.  What did it mean?  It meant to reengage in all that I had missed doing.  If we don’t take care of ourselves, we cannot be strong enough to stand up to ED.  Self care is not selfish.  Self care is healing tears and knowing, deep in your loving heart, that this is not your fault.  Stop carrying that burden.  Stop being ED’s victim.  

 I stopped being that victim and I did not miss her at all. 

Wise Self Advice to Younger Self . . . 

I have been asked to answer the following question as part of the events surrounding Eating Recovery Day:

“If you could go back and talk to yourself at the beginning of the recovery journey, what would your wiser self say to your younger self?”

Talking about a recovery journey for myself would have seemed unlikely when I was in the middle of supporting a daughter through anorexia.  It was not until she recovered and moved on with her life, that I realized I was a train wreck.  I remember sitting in my family room, my chaos gone, wondering what to do.  It became clear to me that I had given up so many things for the eating disorder (hereafter referred to, and with no affection, as ED). 

I had forgotten what it was like to be happy.  I had forgotten what it was like to feel contentment.  I had forgotten what it was like to find joy in simple things.  Through all the turmoil, I had lost me.   Through all the ugliness, my emotional self took a beating.  I had no reserves left for anyone and that included me.  What had happened?

Enter my wiser self . . . oh yes, she eventually showed up.  She told me it was time to take care of myself and that it was something I should have been doing all along.  What?  Take care of myself during the ED storm?  Yes, she said, especially during the ED storm.  That was counterintuitive!  Yes it is, she calmly whispered, yes it is.  You cannot serve from an empty vessel, she said.  Wise self started to pay attention!

I’m a bit stubborn, so I had a steep learning curve.  My wiser self was very patient.  She gently nudged me where I needed to go.  Go to therapy she said, so I did.  Join Mothers Against Eating Disorders on Facebook.  Why?,  I said.  Because, she said.  So I did.  It was and remains to this day a place of healing and support.  Then my wise self said, you may want to attend the retreat.  What retreat? I said.  Hope Network Retreat, she said.  Sure, I said, I can do a few days in San Diego and help some moms.  Wise self said, good.  Wise self knew better.  

Wise self knew it was her time to take care of herself.  Wise self learned that self care is not selfish, but necessary.   ED leaves many victims in his path and I was one of them.  I decided to not be a victim any longer.  It was time to let go of “that which does not serve me”.  After three days of tears at the Hope Network Retreat, I realized just how much needed to go.  How much was no longer necessary.

I learned to be accepting of myself.  I learned to trust myself again.  I learned to say “no” without that wasted emotion called guilt.  I learned I was okay, me!  I was OK!  I began to make decisions based on what was best for me.  

The ED years were filled with anger, tears, resentment.  It will take some time to put all of those to rest.  Recovery, for me, is knowing my daughter's eating disorder was not my fault.  I will no longer be a victim of ED.  He is no longer welcome.  It’s my turn.  

They Just Don't "Get It"

In my discussions with parents regarding their loved one's eating disorder, I often hear of the difficulties with people who just don't "get it". The comments are hurtful. The comments cut. The comments bring us to tears. The comments make us angry. The comments make us wonder why. Wonder how family and friends can be so utterly clueless.

 I do believe eating disorders fall into a category of blame and choice. It's easier to place blame and assume it is a choice than to truly try and understand the pain and the proven science behind the illness. While I do know some people comment with the best of intentions, those intentions are misguided. Would you tell someone who has a loved one with cancer that their behavior is a choice, so that is why they have a scary illness? Would you tell someone who has a loved one with diabetes that it's their fault because they modeled poor eating habits? No, you would not.

 I am at a loss for words to explain the heartless comments and the unthinkable hurt they cause. Acceptance of that fact was hard for me. We need to hang onto what we know is true. We know it is true that it is not our fault. We know it is true that this disease shakes us to our very core. We know that this disease takes so much away. We know that this disease cannot be understood unless it has mowed you down, too. I am thankful that people don't understand. I would not wish it on anyone. (Well, maybe for one day -- then they would get it!). They won't get it. They can't get it. We can only hope our voices will make a difference. We are strong. We are loud. We can make a difference.

Respect yourself and don't allow others to make you feel otherwise. We have been through enough and we don't need other people's opinions of us to make it worse. Know that and tattoo that on your soul. Unless they have walked with you, they just don't know. You can tell them that.  Then you can walk away.

Change . . .

Change.  We need to change.  It needs to change.  You need to change.  Change. Change is difficult.  Change is needed.  A situation not working?  You need to change it.  This is what we hope to do in October.  Hundreds of people will converge on Washington at the M.O.M. March to raise awareness of the needed changes in eating disorder treatment.

Not 1 more.  One more what?  Death.  No one needs to die from a treatable mental illness.  Daily, these souls are denied needed treatment due to lack of coverage by insurance companies.  They are turned away.  It's unconscionable and it needs to stop.  We need your voice and we need your help to support The Anna Westin Act.

The Anna Westin Act (Anna's Law)

I had the honor of spending some time with Anna's mother, Kitty, a few months ago.  To say she is remarkable is an understatement.  Through her pain, she has continued to help others and this law, in honor of her daughter Anna, is the necessary CHANGE that needs to happen.

Truth is that without CHANGE, eating disorders will continue to take lives.  We can CHANGE that.  Will you be part of that CHANGE?

Join us in Washington.  It will CHANGE you.

March Against ED

Goodbye Dad . . .

Today is Mother's Day . . .  I know for many of you,  this day can be a difficult one.   It is for me as well.  My mom has been gone for 27 years and I still miss her the most on Mother's Day.  It is just a reminder that she is no longer with us.  I try to find a way to celebrate that honors her . . . honoring is a nice thing to do.  We can also honor ourselves.  Remember that!

The year started out as usual for me, with hopes of bringing to bloom new ideas and goals.  Life does have a way of throwing you a nasty Nolan Ryan curveball when you least expect it, however.  It did for me on January 27th when my husband and I found my father on the bathroom floor.  He had fallen while putting on his clothes.  This was his second fall in five days.

The next two months were followed up with hospitals and doctor appointments, surgery and more doctor appointments and an eventual stay at a nursing and rehabilitation facility.  Dad despised every minute of it.  He wanted to go home.  At 92, he was out of his comfort zone.  I felt very torn as to what I knew he needed and what his wishes were.  I had to keep him safe.  Living an hour away from me was no longer an option.  My sister and I worked on a plan -- oh it was a grand one -- and he would be so happy.  Truth was, dad was not happy.  He continued to decline and at the end of March we made the difficult decision, at his request, to stop all medical intervention.  He passed away on March 29th, a week shy of his 93rd birthday.  Signing those forms as his power of attorney was not easy.  I had to remember he entrusted that task to me over 20 years ago and it was time I respected what I knew he wanted.  His daily needs were no longer a concern.  He was at peace.  He was reunited back with my mom.  That was a great comfort.

It is difficult packing up a life.  A life well lived.  A man well loved.  A son.  A brother.  A husband. A father.  An uncle.  A grandfather.  A great grandfather.  A friend.  He had many and had outlived most of them.   Having both of your parents gone is a strange feeling . . . almost a disconnect.  When mom died, I still had dad.  Now dad is gone.  These wonderful parents who raised me and provided for my every need, who taught me difficult lessons, who loved me -- are gone.  It hits me at strange times, different moments and my heart feels heavy.

It is now time, however,  to move forward and get back to those lofty goals I had in the beginning of January.  That is what they would want me to do.  Keep looking ahead.  Follow your heart, your dreams,  if you make $5.00, save three and spend two; go slow.

I will, mom and dad, I will  . . .

A Network of Hope and a Little PTSD

This past December, I was fortunate to be able to attend the Hope Network Mom's Retreat in beautiful San Diego.  I was encouraged to attend by one of the parents in my support group.  You see, I preach self care to them all the time and was telling them about the retreat.  One parent piped up and said, why don't you go?  Me?  Yes, you.  You are always telling us to take care of ourselves . . . etc., etc., blah, blah . . . ok, ok, I decided to go.  If nothing else, I would learn some self-care techniques to pass along to my families.

What transpired that weekend was beyond anything I could have imagined.  My daughter was recovered from her eating disorder, so "what was the point in going?" I asked myself.  I quickly discovered what the point was.  It was me.  ME.  Me?  Really?  Yes, ma'am.

As we gathered together for the first time -- 2 coaches and five moms -- it was evident something special was about to happen.  We introduced ourselves and started sharing our stories.  Each one was heartbreaking, each one was different, each one was ours alone.  The pain in our eyes -- that was pretty much the same.  Hurt, anger, resentment . . . it was all there.

We listened, we cried, we laughed, we had some wine -- it was good.

We learned how to embrace JOY in the midst of sadness.  We learned how to accept what happened and see the need to move on.  We learned that life is unpredictable.  We learned to not judge others. We learned self-acceptance.  We learned there are no wrong answers.  We learned that PTSD is very real.  It's not about moving on, it's about remembering.  We can move on, but in all the remembering, that is where the true pain resides.

For me, personally, I had a huge AHA moment -- isn't that what Oprah calls them?  When a light so big goes off in your head it blinds you from the inside out?

I realized in a moment that the work I do to help families truly brings me fulfillment.  It may not always be fun -- eating disorders are not something that you associate with fun -- but helping families to know that this is not their fault and to relieve them of their self-blame is very satisfying.  For them to connect with other families who "get it" is huge, comforting and downright necessary.

I needed to stop listening to that voice in my head (probably some evil twin of ED) telling me that I needed to find something else to do.  Something that was fun.  I learned to listen to my heart, not my head.  My heart is more rational than the mental gymnastics in my head anyway.  I had to learn to be accepting of my own choices regardless of what others thought.  I needed to start liking myself again.
It's one of the hardest things I have ever done, yet one of the most freeing.

You do not need the approval of anyone to follow your heart.  When you live with a family member with a mental illness (yes, eating disorders are a mental illness, not a choice),  it can cause you to question yourself daily.  You are constantly being reminded by the eating disorder voice that it's your fault, you are to blame. It is hard to trust your own voice.   I need to learn to trust mine.  I'm working on it and it feels pretty good.

One of the first changes I made upon returning home was to donate my entire bin of "self-help" books to the library.   It was brought to my attention that by hanging onto them, that perhaps they were a constant reminder of where I felt I was lacking.   Wow!  I felt lighter already.  Thanks, Becky.

I will continue to listen to my heart, my inner compass.  I will continue to pray each day.  I will continue to trust myself.  I will start liking myself a little more.  I will continue to  eliminate from my life "that which does not serve me."

Not sure what that looks likes, but it will be interesting when I find out.  I'll keep you posted.

The Good Works of Social Media

I am not a huge fan of social media.  I believe folks just share too much of their personal lives for all to see.  There are, however, very positive aspects of social media.  Mothers Against Eating Disorders (MAED) is a Facebook group that is a powerful force and a wonderful support system from warrior mommas all over the world for those who have a loved one suffering with an eating disorder.  It is a closed group, so you must be approved in order to be able to join.  It is quite wonderful.

Recently, I felt compelled to reach out to all the moms, especially the new ones starting out on this journey.  Here is what I shared with them and would like to share with you:

Good morning Dear Mommas ~

As I sit here and read these posts -- especially from the new moms -- I want to come and hug each and every one of you. I want to talk with you personally and give you some hope and light in the darkness you are experiencing. In looking back over the years ED invaded our home and took over our lives the memories are painful indeed.

I know we all want our kids to be happy. That is a mother's dream. However, when ED shows up, they become something we can hardly believe. This, however, is what I want you to believe: Your loved ones have been taken hostage by this disease. They are still there, just unable to find their voice because the one in their head is so loud and constantly reminds them how useless and worthless they are. While your loves ones are still under 18, you need to make some tough decisions for them. They are incapable of seeing what is best for them. They cannot trust themselves, so they trust ED. Will they (ED) get angry? You bet.

For so many years, I parented this disease out of guilt. My decisions made me feel better, but it did nothing to help my daughter. I was so afraid of causing anger, that I walked on eggshells and gave ED a comfortable place to live. I needed to grow a spine of titanium! The threats were ugly, mean, hurtful. However, I adopted the mindset that she could be mad at me for the rest of her life. I had to do what needed to be done to see that she would have a successful life.

Recovery around life, not life around recovery. You cannot have one foot in recovery. You need to be all in, all the time. If they are not well, their life will be one painful struggle after another. It takes time -- years sometimes -- and it is exhausting. Self care is mandatory. Mirror for them what you want for them. When they see us crying and out of control ourselves, it only reinforces what the ED is trying to convince them: look at what you are doing to your family. You are worthless. My daughter shared that tidbit with me after her recovery. I never looked at it that way.

I understand each family dynamic is different and sometimes there is nothing we can do. What we can do, however, is take care of ourselves. Sometimes the change we want, needs to start with us.

Above all else, love them. They are hiding behind the mask called ED and it takes time to trust themselves, love themselves and find themselves.

Know I am always available for a phone chat should you ever need anything. All you need to do is ask. I never want any one of you to feel alone through this journey. We need each other and I thank God each day for the MAED group who reaches out to us all to keep us afloat.

Hugs, kisses and hope to you all. Hang in their Mommas -- you are stronger than ED ever could hope to be. Lean on us, cry with us.

So, dear families.  Never loose your grip on hope.  Hope is what keeps us moving, giving and loving.