Life on Hold

 

When I was pregnant I saw a card congratulating a couple on the birth of their baby. The cover of the card had a couple standing on top of wedding cake that was placed on what looked like a strong pillar. The cover of the card said, “You never know the strength of a foundation tell it goes through an earthquake.” Inside the card was a picture of an exhausted looking couple, wedding clothes torn to shreds, wedding cake broken in pieces scattered across the room. The woman had a screaming baby in her arms and the husband was on a couch watching TV. On the opposite page of the card it said, “Don’t worry you can rebuild after a few years.”   I still wish I had bought that card.

The old saying goes you never really know someone tell you have a child with him or her.   What they don’t tell you is what to do in those first few months when you both wonder how you will possibly raise this child together. Lack of sleep causes many couples to fight, get exasperated with one another and maybe even wonder if the relationship should continue. Typically you talk to friend, call a family member, or confide in a religious advisor. Anything to get you through those first difficult months where your partner literally drives you CRAZY! I was prepared for my spouse to get on my nerves; I wasn’t prepared to convince the world that I wasn’t crazy. I did all the things you typically do to get support, I called family members, spoke to friends, told “professionals” and yet for the exception of a few brave friends and several strangers no one really helped ensure our foundation would remain strong. You never know the strength of a marriage tell you save it, yourself!

I had always wanted a child and when I finally got pregnant at the age of 35 I thought I had adequately armed myself for what I feared might be a battle to physically cope with the pregnancy and to deal with the challenges of adjusting to motherhood. To my shock it was those I loved the most who I had to help adjust to the new baby.   I on the other hand, felt a sense of inner calm and bliss like I had never experienced before. I knew my purpose and felt confidence and a sense of happiness and love like I never imagined. My world was whole, complete and I wanted to cherish every moment in peace. That’s not what happened.

As the ambulance doors opened and I was being wheeled inside a flood of memories and emotions zipped through my mind. I couldn’t believe how I had gotten to this point. Why wasn’t I on the couch in my pajamas with my baby and my husband next to me smiling? “ Good luck,” the driver said as he closed the ambulance doors.   I took a deep breath knowing I would need to sound calm, and rational if I were ever going to get myself out of here. It was so hard, I was so scared and my chest already began to ache with the urge to feed my son. I wanted to scream and sob, give me my baby. I couldn’t, I knew it would only make things worse.   As I was wheeled into the psychiatric hospital I noticed two sides. One side the patience in the lobby had visitors, roaming the area, easily able to walkout through the sliding doors into the warm breeze of the beautiful summer day. The other side, the side I was being wheeled into, on the ambulance gurney, had heavy metal and glass doors, the driver pressed a button to have me buzzed in. It was what I feared I was being checked into the locked ward.   Health policy is my field so I was very aware I was being place on a forced psych hold. I knew I had some rights, but I was terrified. When would I get to go home? What would become of my son? What if they took him away from me?

Each state has laws on grounds for committing someone to a psychiatric institution against their will. In California it’s called a psychiatric hold or a 5150 for the section of the state law of the California Welfare and Institutions Code (specifically, the Lanterman–Petris–Short Act or “LPS”) which allows a qualified officer or clinician to involuntarily confine a person deemed to have a mental disorder that makes him or her a danger to self, a danger to others, and/or gravely disabled. A qualified officer, which includes any California peace officer, as well as any specifically designated county clinician, can request the confinement after signing a written declaration.

The doors slowly closed behind me. I was a new mom in jail. A friendly young woman greeted me and walked me into a small room and began the intake process.

“So do you know why you are here today,” the nurse asked.

“I was taken to the ER by a neighbor. They said the police had been called. My husband and the neighbor think I have post partum depression. I was in the ER the last 24 hours. Security was watching me sleep with the curtain open, I had to ask permission to use the toilet and to breast feed my baby. Please you have to believe me I am not depressed. My husband is. He has been acting strange ever since my son was born. He’s not sleeping, he’s angry. I think he is the one with post partum depression.” I said trying to explain what had happened simply and calmly as possible. Somehow if I was calm perhaps my explanation would somehow seem rational and I would be magically released and go home to my baby.

“ Men can get depressed after a baby,” she said reassuringly.

“You believe me?!” I said hopefully as my voice trailed off.

“Yes, I do. Having a baby is difficult for both parents. Are you feeling anxious?   Do you have trouble sleeping? Do you want to harm yourself or your child? Do you hear voices?” She began the required psych screener. It didn’t matter if she was placating me, or actually believed me, it was clear I wasn’t going anywhere for at least the next 72 hours.

With the swipe of the ER doctor’s pen I was committed. A breast-feeding mom, snatched from her child, who was now being cared for by a Doula – the birth coach my husband originally want me to hire, a women who I barely knew, in the presences of my husband, who I had no idea what he was feeling.   Holding back my sorrow, anger and frustration, I calmly answered her questions.

“Do you know where your child is now.” She asked.   “Yes, he is with the woman that was suppose to be my birth Doula and my husband at our house. I called the Doula when I was in the ER. They made me find a third party to take care of my son or social services said he would be placed in foster care. Please let me go home I only live a few blocks from here. Please I need to breastfeed, I’m in pain.”   I calmly but urgently pleaded.   “I can’t do that,” the nurse said with a slight giggle. “But let me see if we can find you a breast pump, I have to call over to the main part of the hospital. Be patient though it’s late, it may take tell the morning.” She said as she took notes.

My son at that point was eating every hour and a half. I was already feeling engorged. I could feel the pain and panic in every part of my body at the thought of having to wait another hour, let alone tell morning. Then it occurred to me, oh god what about my son, he couldn’t wait either!   What if he didn’t accept a bottle? Could he die in the few days I was in here? He was only a few weeks old.   What if he didn’t want to breast feed after I was released?   I felt rage rise through my soul; they were putting my son’s health in danger and were robbing me of the most basic right as a mother. Breast milk was supposed to be the most beneficial and important during the first 6 months. If they were supposedly medical professionals why did they not understand this? If my child and I wanted to breastfeed how could they possibly separate us?

“Can I get you anything else to make you more comfortable?” She asked. “Yes, I’m starving I need to eat. I’m in pain, I had a c-section, I need Advil and Tylenol, I can’t tolerate pain medication. Speaking of medication…do I have to take any?”

I asked knowing that a 5150 meant possible medication and if I didn’t take it I would be seen as non-compliant and would possibly not be released within 72 hours. My stay could possibly be much longer; I wasn’t exactly sure how long they could hold me.   But I knew if I took psychiatric medication for any significant length of time I would have to stop breastfeeding altogether. I knew one of the few “therapeutic” things they believed they could do for me, besides counseling, was to “stabilize me” and that required medication to monitor. This was anything but therapeutic and they were potentially dismantling a new family.

In fact as my neighbor drove me to the ER, instead of the police, I told her angrily. “Do you know what you just did? I am going to be placed on a psyche hold and my son is going to foster care.” I wanted to scream at her and jump out of the car.   “Everything is going to be ok, you need help. Your depressed they will help you.” Trying to be as loving as possible she believed everything was going to be ok. She was a physician, she was following protocol, “do no harm.” I understood that she couldn’t sit back and do nothing, not when a child’s life was at stake. I tried to explain to her that I wasn’t depressed. Even though I had been crying and seemed scared. My husband was the one that was depressed. She didn’t believe me. She had talked to him and he showed no signs of the behavior I saw. He told everyone he could think of that I had post partum depression. I also confided in this same neighbor, so at that point it was a he said, she said, scenario. My neighbor told my husband to call a psychologist friend. The psychologists administered a screener, based on the answers my husband gave they flagged me as having post partum depression. The psychologist told my husband to call the hospital where I delivered my baby, the labor and delivery department following hospital protocol called the police. With one phrase, “post partum depression” without anyone trying other measures to help my family first, I was given a one-way trip, do not pass go, to the psych ward. A few phone calls, one over tired engineer husband, who didn’t understand what a woman goes through after she gives birth, resulted in me being place in essentially a plush jail.   With no trial or jury, as easily as that, my newborn child, who depended on me, the food I gave him, was taken away.

Finishing the screener the woman handed me a brochure on my legal rights during a 5150 hold. She explained that in the morning the doctor would meet with me and decide if I would require medication and I did have a legal right to refuse but I was here for at least 72 hours. The longest 72 hours of my life.

“Now let’s get you some food. I can’t administer medication at this hour, so I can’t get you an Advil and I won’t be able to get you the breast pump tell tomorrow,” the intake woman said as she opened the door.

For the next few days I got to know the other patience, their stories, we all talked about strategies to “comply,” how we would follow protocol, so we could be released. It was a haunting experience and a glimpse into how broken our mental health system is. I was fortunate I was in a well run facility, which I am sure was therapeutic for some people. But it was clear it was not therapeutic for a new mother.   If you are a mom and actually do have post partum depression the system is inadequately prepared to help you manage your depression and assist you in caring for your child.   Despite the Brook Shield’s book and related media attention on post partum depression over the last few years, we are still a system that at it’s best fails women and at it’s worst, such as in my case, can actually cause greater harm than good. Our current mental health system does not have a place where moms and babies can be together. Any help you do need on an outpatient basis you have to drag your exhausted self to “support groups,” or counseling sessions. Who wants to leave the house after the first few weeks after the birth of a baby? If you do manage to leave the house I think you at least deserve and massage, or a pedicure. That by far would have been a more therapeutic counseling session.

While my story may be an extreme case, I am not alone. The myth of new motherhood takes many women by surprise and the strength required to navigate this new role can be truly the most difficult thing anyone will go through.   The loneliness, fear and anger of why those around you simply don’t understand can make you feel hollow. It has forever changed me in ways that are both haunting and joyful. I hope my story will provide comfort to other women and guidance to a health and social welfare system that is inadequately prepared to deal with the needs of mothers, fathers and children in crisis.

What’s next —I dream of a place where mothers can go….

My dream is to create a retreat center so moms can get the rest, relaxation and support that they truly need. We also need better support for our birth partners. The whole family is adjusting after the birth of a baby. The idea I have is something other countries have already done in places like Germany, Portugal, the UK and Kuala Lumpur. I’ve seen a few “mom special retreats.” However, these retreats are usually designed around a theme like yoga or finding your career path and meeting your personal goals. Many of these don’t provide childcare and they don’t support the whole family. For many, partner dynamics are as big of a challenge as post partum care.

I’ve also thought of a program where fellow moms would be trained to provide support to moms post partum. While the use Doula’s, (a woman who is trained to assist another woman during childbirth and who may provide support to the family after the baby is born. ) have become more common in places like California, but because they can be expensive they aren’t used by most women. Doula’s do wonderful, creative work and are an important part of a long-standing, exceptionally trained, birthing tradition. For more information see: http://www.dona.org/develop/find_a_workshop.php

We no longer live near families, and we don’t have a base of community support. So why don’t we have something for every woman, for every family after the birth of a baby, the loss of a spouse or for other major life transitions. We are going to have the biggest population of aging adult in the history of our country. Frequently mother’s are tasked with not only caring for children, but for parents as well.   We need support and we need institutional programs that are well funded, easy to access, at a reasonable cost, to meet our needs for caring for our population both young and old.

Here are a few things I found that I hope can serve as a few models.

“Hotel spa like Services” with medical and psychological support

Kuala Lumpur, http://www.momretreathome.com/

In the UK, although this one is shockingly expensive. http://www.smh.com.au/news/national/some-sleep-for-mum/2007/07/28/1185339322390.html

In Portugal – http://www.thesanctuaryportugal.com/signature-retreats/one-love-mother-and-baby

“Mom Retreats” some have childcare and some don’t. None of these retreats support the whole family.

Momma Heaven – Yoga retreat in the UK http://mamaheaven.org

Time for Mom – Three-day life coaching conference for moms (no child care (http://timeformom-meretreat.com

Yoga Retreat – http://www.suitcasesandstrollers.com/interviews/view/yoga-retreats-with-babies

Breast feeding support retreat in Ohio – http://catholicbreastfeeding.blogspot.com/2012/09/holy-family-institute-retreat.html

Lists various themed retreat options for Moms in Washington State.https://www.parentmap.com/article/recharge-card-fab-retreat-options-for-moms

 

In 2015, I  published a prior version of this blog post as part of a guest blog on the Disability Visability Project.  To view the prior version see: http://disabilityvisibilityproject.com/2015/09/27/guest-blog-post-life-on-hold-by-anne-cohen/

 

 

First blog post

Can you have more than one life in a lifetime?

What if you could lead more than one life in a lifetime? I think as a person with a disability that’s something that has always been my dream.

When I was a child I wanted to be a poet or a cellular neuroscientist.   My poetry expressed my pain and hopes.  My interest in neuroscience was an effort to “find a cause and cure” for the ongoing health problems I experienced that went unanswered for my entire childhood.

I have Muscular Dystrophy, I got sick at 8 and diagnosed at 18. My arms shake in certain positions, no one to this day, can tell me why. I like to say the first few decades of my life I grew up in the health care system. I lived the life of pushing, getting though, ignoring, and getting on with it.

At 18 I lived the life of learning to shape my future, while nurturing my body.  I learned to know my limits, when to push past them and to grieve when I couldn’t.  I went to college and on to graduate school and swallowed my fear of economic survival. I spent my life methodically working to accomplish life goals, while at the same time feeling as if my body was swimming in quick sand, weighted down by fatigue, pain and frustration.

Into my twenties I grew into my identity as a woman with a disability — with all of the dynamics of navigating ableist notions of dating, sex, and love. I formed my career around my experiences in the health care system, helping the industry better respond to people with disabilities needs and teaching the disability community to navigate a system far to complex, inefficient and economically cruel.   I often feel I haven’t done enough to change the system but this is one of my lives…

At 36 I had a baby. My experiences after his birth and the lack of community support for mothers has started me down the path to another life…

I live in Silicon Valley — the techno hyper driven southern side of the San Francisco Bay Area.   The highway to some of America’s most brilliant, creative people. A place where “transformative” change is the mission that drives every breath, fuels every waking moment and haunts many sleepless nights of inhabitants. Nestled into several small towns; winding bike paths make their way through rolling hills of office parks, strip malls, typical houses and DOT.com mansions, all mashed together to form one the most inspiring and yet narcissistic places on earth.   Living in a land of engineers offers a certain level of logical comfort. This continued focus on logical control is romanced by the inspiring youthful energy of intense dreamers of tomorrow’s future.   It also is a place where as mothers we are pushed to LEAN IN.  To Strive to be great and to get support so you can change the world, one over achieving success at a time. Get support from where?  Your parter?  The person you hire?  Your day care center?  Is this the real support we need?

I think mothers don’t have the support we really need. We aren’t allowed  to admit that life with kids is hard, navigating our relationship with our partners is hard and keeping our identity of what we want our next life to be after out kids is even harder.  It’s lonely, isolating, hard to find your confidence and a group of people you feel supported and safe with.  At least it has been for me.

It is a challenging time in the world. So many pressures – economic, environmental, political, religious, social and class tensions, swirl with the social pressures to be something, excel at something, to change something and to be present for everything and everyone. I think this struggle is even greater when you are aware of your own mortality and that of your friends. How do you live as many life experiences as possible in a lifetime full of unknowns? We all have this unknown – yet my unknown is the quite voice that drives me to keep trying, to keep creating and to keep asking how the world could change. The voice can be encouraging and sometimes full of fear and anger.    It’s hard to just be. To not expect more out of oneself than simply breathing, being present, listening to what your real passions are, your desires, your joys, what settles your body, mind and sprit.

As a mom, I have no greater lesson than I can learn from child than to be present. It is a struggle. I have lived the life of just me, a life of we and now a life a shaped by us. What will my life be once my child has grown into an adult? What lesson will I have taught him? Will he live with joy? Will he live with a sense of awe and amusement of the world around him? Will he wake with purpose in his day and sleep with peace at night? I hope so…

Through this blog I hope I will explore my joy and struggles of learning to be a mom and perhaps discover how this life will weave into my next life. Along the way I will share some of my stories as a mom with a disability, not for pity, not to be an inspiration but because it is a fundamental part of me. I am a spastic mom that frequently spills milk and rebels against the notion of “Leaning In.” I prefer to recline with a cup of tea!