In Recovery

For the last few years I have volunteered with an organization that provides prevention, intervention, and treatment for adolescents who struggle with addiction and their families.  I recently found myself thinking that for grieving parents suffering the loss of a child, there are really a lot of similarities that parallel that of struggles with addiction and recovery.  That may seem unbelievable to you at first thought, but bear with me and let’s walk through it a little…..

Immediately after the loss, we may go through the denial in various forms – “No, (s)he is going to be just fine” (upon being told in no uncertain terms that no hope is left), “I’m fine” – virtually ignoring the fact that the child is gone and going through your days as though nothing has changed.

If we had time with our child, there may be times of withdrawal. All you think about, ALL the time, is your child.  If they had been at home, you may camp out in their room, snuggle with their clothes or favorite stuffed animal just to smell them again.  You may watch old videos, or continuously look through old photo albums, just staring at the face you will not see again in life. Many these reactions are part of normal grief, but some people get stuck here. Sometimes they remain stuck here for a very long time. More so, many of us start exhibiting addiction-like behaviors, such as not meeting obligations and work responsibilities, engaging in highly risky behaviors, losing interest in activities or doing things you wouldn’t normally do in attempts to deal with or process their grief.

“But isn’t that depression?” you may ask. Good call. I am not a medical professional, and there is way too much complexity in such things so I’m not even going to go there. My point is not to argue that the lost child is an addiction to some bereaved parents. Rather, my point is these behaviors can be similarly viewed with those of addiction and that because of this, looking at people’s challenges and steps in terms of a path of recovery can be useful in understanding their journey and potentially helping them.

First, I want to share a very important aspect about my personal view of recovery, and perhaps challenge yours…..

In volunteering for the organization I mentioned earlier, I have learned that there is a big push to redefine recovery (for the outsider’s perspective as well as the insider’s) as something to be PROUD of and shared openly, to learn from. You see, there has been a long-standing stigma associated with recovery and the programs that help others on their road towards kicking their substance of choice. Think about it: Secret meetings where you don’t talk to anyone else about what happens there (a bit like Fight Club, eh?)  You don’t disclose who may or may not be in their with you, you show up and keep the anonymity out of respect for traditional beginnings. You may feel shame in admitting that you’ve lost control of yourself, and in the things you have done because of that addiction. Addictions have been viewed by the outside world as something to feel guilty about, something we should be able to conquer our own, and when we can’t we are inadequate.  But much like the stigma attached to talking about dead children and our grief for them (no matter how much time has passed), because it makes others uncomfortable, this view must be changed.

A new view

Spearheaded by a ever-growing movement called Faces & Voices of Recovery (http://www.facesandvoicesofrecovery.org/) , the move now towards being open and brutally honest about being in recovery from addiction to substances hopes to provide not only a sense of solidarity with countless others in the same boat, but also the opportunity to share and learn.  We have learned much more from this movement about addiction itself. It’s helped us to be more recognizing of the inner struggles and signs of abuse/addiction, it’s shown us that there are people who are able to function nearly perfectly in public while still privately battling addiction, but still struggle to keep it at bay when they are alone, and it has shown time and time over that it’s not something that’s “cured” once the twelve steps are done, but rather an ONGOING struggle.

But what is recovery exactly? 

A paper published by the Journal of Substance Abuse Treatment in 2007 noted a special section about “Defining and Measuring Recovery” had a definition that made the most sense to me. It noted a working definition of recovery from substance dependence as “a voluntarily maintained lifestyle characterized by sobriety, personal health, and citizenship.”

Obviously the part about sobriety here may not apply, though it depends on how someone is handing the grief. I am not trying to discount the importance of sobriety with respect to substance abuse, surely substances may be a crutch in times of grief – but for my purposes, I’m looking more at the personal health and citizenship aspects.

In recovery, one should be maintaining personal health (it should also be noted here that personal health encompasses physical, psychological, and spiritual health as well as independence).In recovery, one should strive towards citizenship, meaning living with regard and respect for those around you.  I will view it here as when one chooses to re-enter their world as a functioning human person. Returning to work, taking care of things at home, acknowledging and caring for any other surviving children, social obligations, taking part in community events, and even volunteerism.

So what does this mean in terms of how we interact with and recognize recovery for bereaved parents?

This paper further notes the following things defining recovery that stuck out in particular to me:

1) Recovery is not simply sobriety. – Recovery is multi-faceted, and as mentioned earlier, its important to look at the health and social aspects not just the presence or absence of one single item.

2) Recovery is a personal condition, not a specific method.  There is no static measurement of recovery. Its highly subjective, because people all operate differently, and figuring out what recovery looks like for an individual who is already adjusting to a new normal further complicates that.  One should recognize that there is no single checklist to fit the bill.

So thinking about that…. let’s take a look at some of the varying programs for recovery that are out there and what we can incorporate into helping the bereaved parent

Acknowledgement

In some of the “Anonymous” groups for example, members get a chip for mile-markers of sobriety.  Every bereaved parent has those markers in their head.  Wouldn’t it be nice to recognize significant dates and milestones along with them? Not a “congratulations you’ve made it a year”, but more acknowledging the dates of importance.  Most bereaved parents are touched deeply when others remember their lost children (especially the more time passes) because we are afraid they’ve been forgotten by others except themselves.

Forgiveness

In the step-programs, making amends with those you’ve “wronged” is one of the significant steps.  An example would be the feeling of having wronged friends of family members by having innate anger or jealousy toward those with healthy children or those who become pregnant while the bereaved parent was mourning. Or they may have ditched their best friend’s baby shower or stopped hanging out with friends for those reasons. They may feel like they did them wrong by being unsupportive when they did nothing wrong, or just knew they couldn’t handle it at that time.

I think for bereaved parents, this is two-fold.  First, for the guilt they may feel for wronging their child in some way as their parent, even if they did not have any particular fault in their death. Parents instinctively have the protective response, so when their protection isn’t enough, when love isn’t enough, or when a mother’s body starts to work against her and her unborn child, the guilt sets in. Writing an open letter to their own child telling expressing their feelings, and asking for their forgiveness if they feel they need it may be a helpful practice. Secondly, bereaved parents should be encouraged to take time and focus on forgiving themselves, over and over as many times as it takes until they truly believe and feel it, and practicing self-compassion. None of these feelings are wrong in any way.  They are natural, and they are part of the grieving process.

“It takes a village” (kind of)

Many programs have both a group and mentor type support system, and many times it is a combination. Both have their pros and cons, but I generally advocate for bereaved parents to surround themselves with as many people as possible who, together, fulfill as many of their perceived voids. To clarify, I mean this as a sum of parts, not a team that is in contact with each other about the bereaved parent. The twelve step programs strive for members to recognize and admit that they are powerless against the addiction, that it is out of their control.  I believe that this particular acknowledgement is essential in a vast majority of experiences. Embracing that is essential for the self-compassion and forgiveness mentioned earlier.

The amount of support gained from each of these methods are dependent on the person.  Some may not get as much out of group-based support as they will from individualized mentoring and professional counseling for example.  What one may get out of their group (being in a place which provides tangible evidence that they are not alone in their struggles) could be the singular takeaway if they don’t want to share themselves, but still vital to their healing. Having a “sponsor” whom the person feels they can trust and turn to for help in times of need, would likely be beneficial. This person does not have to have a labeled role, but should be someone who has had at least some kind of similar experience to provide a peer-based support. Added to this team may be trusted health-care professionals, such as a social worker, psychologist, psychiatrist, therapist, significant others, family members, spiritual support persons, or others depending on life situation. It could be as simple as someone providing resources to the parent.

When they are stronger than they realize

Another recovery program, called SMART Recovery (smartrecovery.org) is embracing teaching self-empowerment and self-reliance. This program also teaches how to manage thoughts and behaviors, which may be of value to one who is struggling. This is completely opposite of the foundation the step programs were built on, but equally as important when focusing on recovery in the loss of a child. For as valuable as supporting players are, only the bereaved parents themselves can truly understand how their world will exist now that their child is gone and how to continue living in it.  Teaching them the tools to put the power back in their own hands is vital.

Giving the tools

Some recovery programs teach the importance of identifying and recognizing triggers and learning relaxation techniques. These are everyday life skills that everyone can benefit from, but are especially useful in helping those who have experienced a traumatic loss, who may also suffer from anxiety.  Loss sets off a ton of triggers, from the obvious (upcoming milestones, someone else’s baby announcement, etc.) to the hidden, like some random day a bereaved parent is walking down the street sees a child that doesn’t look anything like theirs (or what they envisioned he would look like), but is about the same age that their child would have been had they been here. Or a red bow, just like the one that was bought for their baby, an old picture they happen across when spring cleaning, or some stranger asking them how many kids they have, etc.  Helping teach bereaved parents to cope with the triggers and manage their preparedness for the obvious and not-so-obvious will do them a great service.

Conclusion

Bereaved parents are often “in recovery” for life. At the end of the day, there is no substance stand-in they can kick from habit.  But the process in recovery and some of the takeaways are useful. I encourage you to think about the models that recovery programs have provided us. I encourage you to challenge the stigma by teaching the bereaved that there a place for recovery, and it’s not just at a group meeting.  It is HERE. It is NOW. with anyone who will support them and give them the tools. It is those of us who will be there when they “fall off the wagon”, which really isn’t falling off at all, merely tripping on the road of recovery. No parent is every “cured” from their loss, they never completely move on, only forward, because the remnants from that loss will always be with them. It may be a fleeting thought, or a hard holiday every now and then. It is not always constant, but it is always there lingering, just like that urge of an addict to use.

***  Reference Note: The article I have been referencing here about defining recovery and such can be found here: http://www.naadac.org/assets/1959/betty_ford_recovery_definition.pdf

Don’t treat grief as a mental disorder

This is a very interesting take on grief that was found through the Willow House blog (willowhouse.org), and it’s our intention to share in order to educate, and support those who are going through their own grief.

———————————

Fact: Grief is NOT a Disorder

The following was written by a group of concerned professionals in response to the release of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders ( DSM-5).

This statement was developed by a work group at the meeting of the International Work Group on Death, Dying and Bereavement in Victoria, British Columbia on April 28 – May 3, 2013. You have full permission to translate the document into other languages, and to distribute it via websites, blogs, the media, and other venues. It is our intention that the message be shared widely.

When does a broken heart become a mental disorder? Rarely, if ever.

But don’t tell that to the American Psychiatric Association, which has just released its fifth version of the Diagnostic and Statistical Manual of Mental Disorders. The DSM is a catalogue of mental disorders, hundreds of them, each trailing a listing of symptoms. The manual informs selection of a diagnosis, which is required by U.S. insurance companies for reimbursement for mental health care.

There’s a major change in the newest version, DSM-5, with serious implications for the millions of people who are coping with the death of a child, spouse, parent, friend, or other loved one.

But first, a quick glimpse at the history of this publication, often referred to as the bible of psychiatry. The very first edition, published in 1952, didn’t even refer to grief, considering it an accepted and normal reaction to the death of a loved one. The third edition added an exclusion statement under Major Depressive Disorder, referred to as the “bereavement exclusion.” Under this exclusion, a diagnosis of Major Depressive Disorder could not be made for a full year after a death. They recognized that normal and common reactions to the death of a loved one could look like symptoms of depressive disorder, for example, sadness, disturbed sleep, lack of concentration, changes in eating, and loss of interest in things that were once pleasurable.

In 1994 the 4th version of the DSM reduced the bereavement exclusion to two months after a death, and this new version removes the bereavement exclusion completely, meaning in effect that anyone can receive a diagnosis of Major Depressive Disorder two weeks after the death of a child, parent, spouse, friend, or anyone. Why does this matter? For at least three reasons:

First, normal reactions to the death of a loved one will be easily misclassified as the mental disorder depression. Grief is not the same experience as major depressive disorder. It is not an illness to be treated or cured. It is a healthy response to a painful reality that one’s world is forever altered, and will never be the same. Absorbing this loss, and adapting to all the changes it unleashes, has its own unique course for every person, and will not be stilled or stopped by quick fixes or simple solutions. Death is a life-altering event, but grief is not a pathological condition.

Second, antidepressants are commonly and frequently prescribed. There is a strong likelihood that newly bereaved people will qualify for a diagnosis of Major Depressive Disorder just two weeks after a death even though their reactions are normal. Antidepressants have not been shown to be helpful with grief-related depressive symptoms, and there is accumulating evidence of long-term negative effects of being on antidepressants. We need to ask why psychiatry is pathologizing grief and therefore making inappropriate pharmacological treatment easier. And we should not overlook the self-interest of pharmaceutical companies who see a new and substantial market for antidepressants, currently a multibillion dollar industry.

Third, about 80% of prescriptions for antidepressants are written by primary care physicians, not psychiatrists. We have the expectation that physicians, as well as psychologists, social workers, and clergy, to whom many of us turn for help after losses of all kinds, have professional training, solid research backing, and supervised experience to guide them. Some do, but in fact, a considerable majority of practitioners with these degrees have no professional training at all in responding to the bereaved.

The caution here? Be wary of physicians or other medical professionals who rush to prescribe antidepressants to address your grief.

Here’s a better prescription: Mourn the death of your loved one in your own way. There is no prescribed formula. You may cry; you may not. Your reactions will be shaped by many things: the relationship you had with the deceased, your personality style, and the support or lack of support you receive from others. Push aside those who tell you to move on, that every cloud has a silver lining. What one person finds comforting might not work for another. Find friends and family who understand, and with whom you can share your experience. If they won’t listen or help, or if their help is not enough, search for support groups through your local hospital, hospice or community organizations. Don’t be afraid to seek professional help, but if you do, ask about the person’s training, qualifications, and experience with grief, loss, and bereavement.

We grieve as deeply as we love. We can get off track with love, and we can respond to our grief in ways that aren’t healthy, or don’t serve us well. But let’s not make love, or grief, a mental disorder.

###

This document was written by a group of concerned professionals in response to the release of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders ( DSM-5).

Thomas Attig, PhD, Professor Emeritus in Philosophy, Bowling Green State University

Inge B.Corless, RN, PhD, FAAN, Professor, MGH Institute of Health Professions, Boston, MA

Kathleen R. Gilbert, PhD, Executive Associate Dean, Indiana University School of Public Health,

Bloomington, IN

Dale G.Larson, PhD, Professor, Department of Counseling Psychology, Santa Clara University, CA

Mal McKissock, OAM, Director of Clinical Services, Bereavement Care Centre, Sydney, Australia

David Roth, Executive Director, Puetz-Roth Funerals and Grief Companions, Bergisch Gladbach, Germany

Donna Schuurman, EdD, FT, Executive Director, The Dougy Center for Grieving Children & Families,

Portland, OR

Phyllis R. Silverman, PhD,

Scholar-in-Residence, Women’s Studies Research Center,

Brandeis University, Waltham, MA

J. William Worden, PhD, ABPP, Psychologist, Laguna Niguel, CA

We would like to acknowledge the International Work Group on Death, Dying and Bereavement (IWG) for the opportunity to develop these ideas. This statement represents the opinions of the authors, not the opinions of the Board or membership of the IWG.

Link

Saying Goodbye had to be perfect for you – Guest Blog post from the Tangerine Owl Project on “Chasing Dragonflies”

I was honored to be able to be a guest blogger on the beautiful blog Chasing Dragonflies… this one was hard to write because it brought back a whirlwind of emotions.  I remember the memorial like yesterday.  XOXO to any parents who have had to do the same, and a great big thank you to Chasing Dragonflies for letting me “write it out”.  Click the above link to read and then follow the Chasing Dragonflies blog too!

Saying Goodbye had to be perfect (for you)

As I recall the days in the NICU and the loss of Delilah, I often wonder how I made it through in once piece.  Usually I attribute this to my children and my husband.  My husband was my partner who was also grieving and wasn’t afraid to talk about about her or to let me feel however i was feeling without question or instruction. Our children were 3 & 4 at the time, and had come to see Delilah a few times at the hospital during hand-off between our parents and us.  When we found that she was too sick to make it, we called everyone to the hospital and told them there that her condition was deteriorating and we were going to turn off the machines that afternoon. Our 3 year old saw all the tears and it evoked that same emotional reaction in her, not because she totally understood what was happening, but because everyone else was so upset…. but our 4 year old grasped this concept, heartbreakingly clear in his response: “So she’s never going to come home with us?”.  We nodded and hugged and his face filled with tears as he said that he wanted her to come home with us so he could play with her and share his toys with her. Our pastor performed a baptism for Delilah with everyone there and then our family each took time to go in and see her one last time on their own, because when we shut off the machines my husband and I wanted to be the only ones in the room (besides any necessary medical staff).  And then it was time.  Time to let her go.  We got to hold her without the tubes, which we had never done and she was so purple and bloated because of the sepsis she didn’t even look like herself, but it didn’t matter. She was gorgeous. We did get to see those eyes, those beautiful eyes that Delilah had open one more time for us as we talked to her and rocked with her.  She knew we were there.  And then she was gone.  It had been 27 days since she was born and I’d spent nearly that entire time by her side, and now she was just gone.  I wasn’t in denial of anything, but that pain was unbearable, so then I did the only thing I could do at that point; I started working on the plan. You see, I was an event planner by trade, running my own business for the last 8 years, mostly tending to weddings, but it was what I did. It was something I was good at, and something I enjoyed, and now it was a coping mechanism.  There was never a question in my mind that we would have a memorial.  She deserved to be shared with our family, she deserved to be known and acknowledged, even if her life was short, it meant something.  So that evening from our hotel room, I got to work on the most important event thus far in my life.

It started with where she would be buried….we decided to place her grave in my hometown. We had lived in Champaign/Urbana for the last 8 years, but it was not our permanent home, so we didn’t want to bury her there knowing we’d leave.  The hospital I’d delivered at was an hour and a half away from there, so that was completely out because we had no ties to it.  Well, that plus the fact that my husband and I would’ve been happy to see that city firebombed to the ground for what we’d just gone through…… (relax ppl, we would never cause ACTUAL destruction, but man did we both want to at that time).  My husband grew up between southern IL and his folks were now in Indiana which we didn’t get to often, so the most rational option was my hometown, where my parents still lived, along with a ton of my extended family, and a place that we visited frequently.  It was only a few hours away, which was close enough for us, and I remember feeling that it was good because others would be there for her even when we were not.  I got a referral from my mom on a funeral home who was going to work with the hospital to transport her body.  We picked out a tiny casket for her, because there wasn’t really that much to choose from to begin with when they are that small.  And then it was onto the most important things….. the venue, the ceremony, the flowers, and the music.

That’s insane, you may be thinking…..Why do those things matter? Well, they don’t matter to everyone, but they mattered to me.  The reason they mattered was because it was important for us to share our little girl with those who had never met her.  It was symbolism at it’s best, because that was the only way to do so, with the exception of sharing our stories of her.  A baby is a baby right? And who wants to talk about dead babies? Just make them go away, its too sad a thought…… To all of that i Say WRONG.  As in life, babies have entirely different personalities, and should be treated as an individual in death.  You’re right, no one wants to talk about dead babies, it IS sad and wrong that they die without a chance to experience the world, but it happens and she deserved recognition for her life, just as anyone who lived 115 years does. I didn’t care if its awkward, she was going to be remembered, even if we were the only ones who showed up at the memorial (we weren’t).

Now, my husband’s dad was a former Presbyterian pastor.  He had married us at a little chapel in my hometown, in front of 175 people almost a decade ago, so it was fitting that we would share that same space with our daughter and our other children as well.  It was beautiful and was filled with the warm memories of the wedding, actually making it a tiny bit less painful to be the place we say goodbye. He would co-conduct the ceremony with our pastor Heidi who had made weekly trips to Peoria to see us and the baby while she was in the NICU.  She knew our family well and I am forever grateful that she trekked to the burbs to do this for us, but it was equally meaningful to have someone who had been one of the few people who had actually met her to be doing the ceremony along with my father-in-law.  They could speak for her knowingly, not just from what we told them about her, they had connection to her, and the words would be true and do her justice, as well as sharing her with those who never got the chance to meet her. 

We had chosen my cousin and her husband as Delilah’s godparents when she was born (an easy choice as her two siblings were already the godparents of our other kids). Her husband was a talented musician, and we had asked if he’d be comfortable performing at the memorial, to which he kindly agreed.  We chose the song “Hey There Delilah” by Plain White Tees as it had played a small part in her naming, because honestly, I just really liked it (the name and the song).  We found out shortly after she was born that the nursing staff had sung that to her as they got her situated in her NICU room. it WAS for her. I wrote a letter to her as did my husband. He was brave enough to read his at the service, but I was not able, so i had mine read by proxy. We had picked poems and readings that seemed well suited for her, and left the rest up to the resident officiants. 

During our time in the NICU I was lucky enough to have a staff member suggest having pictures taken by the Now I Lay Me Down to Sleep organization.  I will never be more thankful that professional photographers volunteer their time and skills to families going through loss.  Our photographer was wonderful and had made it out before Delilah passed.  Afterwards, she had compiled the images into a beautiful slideshow and set it to a hauntingly touching song.  I had watched it many many times at home, alone, sobbing my eyes out, almost forcing myself to experience the pain of her loss over and over again, but it was so remarkably done that I knew it was perfect to show at the memorial.  I knew I would not possibly be able to hold it together when I heard that first note of the music and when I saw that first image of a stuffed giraffe she got as a gift, but it was such a tribute to her it didn’t matter.

The flowers were another piece of the puzzle, but I didn’t agonize over that.  Orange lilies were it. Not only were they my favorite flower (inspired by my wedding planning days), they were vibrant and fragile just like our daughter. Delilah’s middle name was Evangeline and my husband had nicknamed her Lily for short as he spoke to her through the NICU isolette which made it an even more perfect choice.

We had everything in place, and the day came to lay her to rest. Valentine’s Day. You may also think this is insane, but she had passed away on the 10th of February, and I couldn’t think of anything better than to celebrate the love that we had for her. I knew it was setting up to be a bittersweet day for the rest of my life whenever February 14th hit, others would be out celebrating with their significant others, and gushing about flowers, chocolate and bling, and I would always be reminded of our loss, but strangely that didn’t bother me.  At least there would be beauty around as well.

I had decided to get my hair done that morning and as the stylist asked if we had special plans for the day I found just enough voice to whisper that we were burying our daughter that morning but that I wanted to look my best for her.  She nodded, and said she’d make sure my hair looked lovely for her, and it did. They probably thought I was nuts, I didn’t know if she would be watching over us that day, but if she did, I wanted her to know how much I cared.  I cared about my appearance on the worst day of my entire life. I didn’t wear black that day…instead, I wore a bright fuschia dress because my daughter was anything but dull and frankly I wanted to celebrate her vibrancy and her unwavering boldness in all she did, plus it was a nod toward the holiday that celebrated all things LOVE. 

When it was time to leave for the morning’s events, I almost collapsed into a heap coming down the stairs at my parents house because I didn’t want to….I couldn’t…. go through with saying the final goodbye and watching that little tiny casket be placed into the ground.  We did the actual funeral only for our little family and our parents and a few of my cousins who may as well be our immediate family, but everyone else would be at the memorial immediately following.  and They were there. We had family fly in from other states just for a few hours to be there. Not because we made them, but because she had touched their lives and they wanted to be there. There were others who made the trek from Champaign to be there, and I couldn’t fathom at that time how much of an impact she had made.  I somehow made it through the memorial, I even found myself laughing as my goofy cousin cracked a joke, which was exactly what i needed at that moment.  It was more emotionally charged than I imagined, but it was perfect.  All these small details that may seem strange to anyone else made perfect sense to me, and they all added up to giving others a little taste of what Delilah was like as a person.  They were the right choices then, and they are still the right choices now.  We mourned. It was sorrowful and beautiful and angering and fulfilling all at the same time, but it was perfect. It was perfectly right for her and for us, and that is all that mattered.