Tag Archives: mental health

Grief Doesn’t Die

Memes and GIFs are two words that came out of virtual obscurity…literally, in the last several years and are now household words on the tongues and lips, assuming you can correctly pronounce them, of seemingly everyone in America. Pop culture and the world of the internet have wedged their way into every detail of our lives for better or worse.

Almost daily I find myself and my husband or friends texting these quippy little quotes back and forth to each other. Some are just either so profoundly fitting in a situation or, more likely, just incredibly funny.

Of course you can find memes, often comical or at least satirical, to suit any situation; political issues, to family gatherings, workplace frustrations, etc.. But sometimes there are those meant to speak to the deeper feelings we find ourselves dealing with when words of encouragement are needed.

As the mother of a child who has passed, I see a lot of these posted on Facebook, Instagram, and even Pinterest from others who have traveled the same road I am on myself. And occasionally I post them too. Once in a while one comes along that just speaks so clearly to how I’m feeling that it feels like it could’ve been taken from my own personal experience. I guess before the modern day meme came along this duty was reserved for song lyrics sang (specifically to us) over the radio or the occasional Hallmark card – sent via snail mail, of course.

All too often though, I find that while the sentiment may align with my feelings, the execution is lost on me. A metaphorical ball metaphorically dropped, if you will. I recently ran across one of these little posts which proclaimed that “When you can tell your story without crying, that’s how you know you’ve healed”.

meme

Now, “healed” is a relative term to varying personal degree for everyone. While it may be true for some, no blanket explanation could ever cover such a wide ranging, deeply emotional, and profoundly personal topic. I just want to say to the thought expressed in these seventeen all-knowing little words: bullshit.

If this has been your experience and you have gotten to this point, I am so utterly happy for you and I encourage you to celebrate the place you’re in in your journey and the accomplishment you’ve made. Hopefully the peace that encompasses it is a blessing to you in your stay. I can only account for my own experience, of course, but what I can say about my journey is that the absence of tears runs so much deeper than being considered healed at the lack of their presence.

I will never be healed of the loss of my daughter Not in the conventional, physical sense anyway. Not until my time on this earth comes to an end and am I reunited with her in spirit. Until that time, I am forced to wander around broken, like may of us are. Shattered like a mirror due to myriad circumstances we’ve encountered and endured. No matter how well you glue the pieces back into place the evidence of the break remains a part of the structure forever. The mirror may be reconfigured, but it will never not be broken. Broken is not bad or wrong, it’s simply the sum of the experiences that have taken you to become the person you are today. With rich experiences, both good and bad, we’re all weaving the intricate tapestries that are our lives.

Does that mean that healing cannot happen? No, it doesn’t. For some it may. Yet others may unsuccessfully or unwittingly chase it for the duration of their existence. Some may simply adapt to the new being they have become. And still many more find their new identity in the pieces of their life and spend the remainder of it romancing and nurturing their newfound brokenness, essentially becoming its prisoner. All of this in both positive and negative, healthy and unhealthy ways. It’s just that tears are not necessarily the barometer of health.

Not expressing tears for me, simply means I’ve become accustomed to my situation. I am used to it. There is no longer any shock or novelty in child loss in my life. I am desensitized to the idea of what most people would find too horrific to even entertain in their mind, i.e. the “I can’t imagines” because I have already lived it.

It’s simply another form of survival. It’s part of how I mitigate my pain. I have many wonderful aspects of my life to focus on, though they still doesn’t lessen the pain I feel in her loss. I just refuse to let that pain swallow me up. I can’t well up and break down every time my daughter’s name is mentioned or someone asks me how many children I have. In every part of my life; my job, my writing and speaking, my social relationships, my daughter, and her death are front and center. Not only would it not behoove me to break down at every retelling of her life’s story, but (for me) it wouldn’t honor her, either. I just don’t let tears overtake me. That doesn’t make me any more or less healed than anyone else. It’s simply a personal style of functionality.

I carry on with my life. I am happy, healthy, and productive. I tell her story a hundred times in a row and don’t shed a single tear. And yet, not always, but from time to time I may well up at the site of a dress hanging on a sales rack that I wish I could buy her. Or I pause to catch my breath whenever a particularly difficult hymn is sang during church services.

Grief and pain coupled with crying, though certainly not mutually exclusive, are not necessarily married to one another either. And with a situation so personal, so devastating, who is to say that everyone I interact with is worthy of my tears? For me, my tears are an intimate expression of my love for my daughter, and something that I’m accustomed to compartmentalizing, not sharing openly.

When it comes to grief, of any kind, please don’t oversimplify these nuances by applying generic thoughts on such a complex topic. There is no handbook to reference. There is no cookie cutter for grief. Someone may not be meeting what your expectations of grief are, but that doesn’t mean that they should adjust their expressions, barring physical and mental harm, of course. More likely it’s an adjustment of expectations of those grief expressions, and a more open discussion that’s required for deeper understanding.

Most importantly, just be kind and supportive. Offer a listening ear when needed, and don’t feel that it’s your duty, or even within your power to ‘fix’ them. Just allow your friend, coworker, or family member the time, space, and respect to grieve in the way that’s comfortable for them.

I encourage you to share you thoughts on what your personal barometers of healing have been in your own life, in regard to any event you’ve experienced. Let us come together to transform
the ideas of what both grief and healing look like to the world outside our doors.

Taking Care of Yourself, and Taking A Step Back from Grief

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After the earth-shattering diagnosis of our youngest daughter’s terminal illness that was Tay-Sachs disease I immediately became an advocate, in my own right for awareness, education, and prevention.

I took to the new community of affected families that was there to welcome me in with vigor. Families from all races, religions, and walks of life banded together in this group because of the one thing they had in common, the one thing that trumped everything else they didn’t.

It’s desperately devastating. A club to which no one wants to belong. But at least we have each other. It may sound horribly cliché, and while it is, it’s also true. There is comfort in know you’re not alone. Solidarity in our plight, as it may be.

Technology has been a godsend against feelings of isolation. With most of us across the United States not having any local contact with another family like ours (for us, Miss Elliott was the only child with Tay-Sachs in our state) the internet, specifically Facebook is where we turn to communicate with others.

On our private group page families can post questions, most that their doctors can’t even answer, and expect to have a barrage of responses, usually within minutes, from the experts themselves; other parents living this same life. Conversations usually revolve around day-to-day care, medication dosages, insurance issues, and tips for comfort.

I dove in full force. I too was suddenly one of those experts and had information to offer new parents as they joined our group. In some ways, I relished the offering of my experiences. It helped make them meaningful, exponentially so. I felt altruistic in my efforts, shifting my focus from inward to outward, which I suppose was also helpful to numbing the pain of the reality of our life. I felt it my duty to help other parents, in any way possible. We were a small, but mighty group who rallied around each other. That sense of community has pulled me through some very dark times, and I would do what I could over the next several years to be there for those who needed someone to talk to, to listen to them, to be a shoulder to cry on.

It’s been seven years since Miss Elliott was diagnosed with Tay-Sachs, and just over four years since her death, and now I find that I’m tired. I’m tired of speaking up whenever a question is asked. I’m tired of offering advice. I’m tired of being pulled into the throngs of the high-level emotions of newly diagnosed parents. And I also see those parents, perhaps once new to the group themselves are now the experts. The ones quick to answer a question or supply some advice, and I know, my voice isn’t required in repetition. And that’s ok.

I see questions posed, and as I find that I can’t muster up the emotional energy to do so I think to myself someone else will answer this anyway. It’s not that I don’t want to help anymore, I do, I just need to channel my energy in a different way. To not live in the trenches, as that’s no life at all. I wince at first, in acknowledgment of this feeling, but I know it’s not unique to me. It’s a pattern I see repeated by so many families who have lost their children over the years; taking a step back with less involvement, less communication, less participation. And I think it’s because at a certain point it becomes so mentally and emotionally draining one must step away in order to keep some semblance of sanity, or perhaps to regain it after their child’s passing. Especially to continue on in the world outside our sheltered group.

Two years ago I accepted a position with the National Tay-Sachs and Allied Diseases Association as their Conference Coordinator. It is absolutely my passion. It allows me a way to help every family in the organization. A focus and drive for my energy and for my desire to honor Miss Elliott’s life in a broader sense that keeps me involved, but not on a level that feels detrimental to my own mental wellbeing. As a parent of an affected child first, it’s given me a unique outlook that I hope helps to serve our families in a way only someone in my position could.

I’ll never stop advocating for awareness of Tay-Sachs disease, but finding a way that allows me to carry on in life without being weighed down has been essential to my ability to carry on. Everyone must find the right fit for themselves, but recognizing what works for you and, perhaps more importantly what doesn’t is vitally important for your own survival through the ongoing stages of grief one lives with, forever, after the loss of their child.

Our family photo from the Annual Family Conference in Orlando, FL, April , 2016

To learn ore about Miss Elliott and her life with Tay-Sachs disease, get your copy of Three Short Years here.

Put Your Mask On First And Polish Your Nails If You Want To

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“Don’t worry if the lawn isn’t mowed, or the laundry is piling up”, they said. “Let the dishes rest in the sink, and the trash overflow. Who cares? You have more important things to focus on” I cared. The advice people tend to give you when you’re experiencing a monumental event in life (like caring for a terminally ill child) is often fraught with good intention, but can also be just plain devoid of reality.

The ironic twist here is this: did any of these people stop and offer to come wash my dishes or do my laundry? No. Funny, how did they think we would eat our meals and what would we wear after two weeks of denying our obligation to keep up our home? To the best of my recollection, no one ever offered to mow my yard or take out my trash. No, I did all of those things.

It’s true, I had some very majorly important things to focus on, and the point of their statements was well meaning and innocuous enough, but even so, life was still happening all around me. Why can’t the little things be important things too? Why did they have to suddenly stop mattering to me? The grass didn’t stop growing, our clothes didn’t just stay clean. I still had to function within my household (and Life) aside from just my role as caretaker to my child(ren).

One thing I can tell you is that if these tasks weren’t taken care of, I would have felt even more stressed out, and unstable in my life at that time. It was important to me to maintain my established routine, no matter how trivial it may have been, in order to keep going. I needed something I could count on. Something that was regular, mundane, and consistent. Plus, I needed clean clothes and plates to eat off of. And even more shocking…I wanted a clean house!

I wanted my makeup applied and my hair curled every day. I wore heels, I put on jewelry, and I polished my nails. These were the things that made me feel like myself. These were the things within my control. This attempt at continuing on with life in general, despite my very important circumstances is what allowed me some sense of normalcy and helped propel me through my grief.

If I would have been forced to set it all aside and focus on nothing but the fact that my child was dying, we would have existed in a rabbit hole. I wasn’t willing to take us down into that dark place. Instead, I sailed gracefully above the water with my head held high, and kept my feet underneath, where no one could see them, flailing about mercilessly as I attempted to keep us afloat.

Tending to your daily obligations that exist outside of what may be the main factor in your life, does not mean that you will automatically be falling short in tending to that main factor. The two are not mutually exclusive. If our ability to love, nurture, comfort and care for others is a well, we must make sure we replenish it from time to time before we realize in a moment of crisis that we’ve completely diminished our resource.

The reason that you’re told to put your oxygen mask on first on airplanes is so that you’ll be taken care of and will still be useful to others. A mother’s instinct is to help her child first, but you can’t help anyone if you’re passed out and slumped over. You can’t help anyone if you can’t focus because you haven’t had a shower, or a hot meal, or you feel disgusted by the three inches of roots showing on the top of your head or the fact that you’re still wearing your three-day-old yoga pants with yesterday’s mascara.

As a mother in this society it’s constantly thrust upon you that in your every waking breath you must be attending to your child’s needs. Well I believe that taking a moment to refresh your mind and body does not make you selfish, it makes you human. It gives you a fresh perspective and your ability to care for others will be strengthened in your resolve to also care for yourself, so put your mask on first, and by all means, polish your nails if you want to.