Pain, Power, and Finding Love on A Mountain Top

McKenzie Johnson is someone to look up to, though she, herself would be uncomfortable with the moniker of role model, it’s true. I admire so much about this woman and what she has overcome in her life. A grief counselor once told me that we need to be good stewards of our grief, meaning that instead of allowing it to swallow us up and tear us down, we can use our experiences to help others facing similar trials. And likewise, Mac is a good steward of her pain, even through the struggle of overcoming addiction.

In my opinion it’s the individuals who have been through various forms of hardship who have the most to offer. It’s one thing to live your whole life on top, but it’s quite another to be writhing in the depths of despair at some point, and to choose to claw your way up to the top instead. That’s just what Mac does, every day. She literally climbs mountains, and somewhere along the way she found her voice, herself, and even though she wasn’t looking for it, she found love.

“Just over a year ago I wrote my first guest piece here, Numbing the Pain. In the past year a lot has changed, and a lot has stayed the same. My mom still has cancer, I am still in recovery, I still find it hard to show emotions to those closest to me, my past still haunts me from time to time. I have climbed Kilimanjaro; and found love doing so, I am building a home, I have become an aunt, I have left my job for the time being. I have stepped into many unknowns, and all my expectations have been blown away, like they usually are.

I was reading an interview with Pamela Abalu and her parting statement was, “fear is imagination used for the wrong purpose”. How true that is. When you have a loved one with cancer, and you yourself have the disease of addiction, there is a lot of fear. In fact, I think fear drives us all in ways we may not even realize. After almost five years of being sober my fears have evolved from say, wondering if I would wake up the next morning, to am I enough, have I done enough, am I treating my loved ones in way that I am proud of, will anyone find out that I am making it up as I go along?

They say addiction is a family disease, and it’s true, I know it from experience. I know now the many ways in which this disease of mine affected the people I love most. And I only know this after finally being forced to acknowledge it in treatment. I would say cancer is also a family disease, affecting all those around the one with the symptoms.

Mom has always understood me as a being, knowing things about me before I was ready to acknowledge them myself. In my teenage years, before I was an active alcoholic, I was deep in an eating disorder, anorexia and bulimia. One day she pulled the car over in our neighborhood, looked me straight in the eye and said, “I know what you’re doing to yourself, do you want help?” I said “Yes,” I still see my therapist she found for me. The same one who many years later would look me straight in the eye and say “You would benefit from inpatient treatment.” And I did. I see her tomorrow. Mom would hand write me letters in college, saying that if I ever needed help with drinking that they were there. I would throw them away. I wish so badly I had one of those now. Mom is the type of person who if I cry, she cries, and not just because I’m her daughter. She’s most empathetic person I know. She will move mountains for people and causes she cares about.

She is soon to start her fourth treatment in five years, this time a deadly yet potentially curative cocktail of chemo, immunotherapy and a stem cell transplant. There is nothing easy about what the next six months or more will have in store for us. There is nothing to really prepare any of us. There have been days where I thought I would implode. Around treatment time my depression and anxiety flare up, my thoughts of alcohol increase, fear is a constant companion. Work has been hard to manage, a new relationship has helped so much although has its own stressor of distance. But the process for me this time has been different; I have been more present, going to appointments, helping make decisions, telling mom the sometimes-hard truth that she does not like to hear, and looking at things from a different perspective. I’m focused.

Sometimes, the closeness of others and the reality it brings is still difficult for me to swallow so I show my love in different ways, like raising (a considerable amount of) money for the Leukemia Lymphoma Society again this year through the Big Climb. Events like these help me to channel my energy and desire to help in a positive and productive way, as much for myself as for the one I’m helping. I cannot say that I am a natural caretaker or the best person to be at your bedside, but I am a good decision maker, can ask hard questions and maybe push my mom a little more in areas others wouldn’t, just as she’s pushed me. She can be tougher than she knows. I’ve learned that I can be, too, but I still won’t cry in front of her.

In being more present for my mom and family, work has seen me through more than a few breakdowns recently. Again, being vulnerable in front of people who are not my loved ones is far easier for me than showing those who should be closest to me what I am feeling. I run a team that does over a million dollars in sales a year, I was assisting on teams doing over six million a year before I got my own. I have always put immense pressure on myself to be the best at everything I take on, my therapist would say I am a perfectionist, and I am not ok with being “ok”. I have a hard time saying “no,” and an even harder time asking for help. That’s part of the reason I climb. To get my mind frame out of focusing on the constant pressures I inflict on myself, to get out of my head, to just breathe.

Having a partner to balance and support me, to point things out that I miss, to have a different outlook on things; a healthy perspective has made a world of difference. I know that I should not go through this alone, but I have a disease that wants me to isolate, that will creep in through any vulnerability. If I have learned anything in recovery, it is that we cannot do it alone. This time I didn’t. I asked for help, maybe a little too late after one too many things were put on my plate, but I did and I am proud.

The last and only other time I took a significant amount of time away from work was when I went to treatment for my alcoholism. All in all, I was there for five and a half months. I then chose to live in the nearby community for a few months after that. It was the best, and hardest decision I have ever made. If you would have asked me a few months ago what could possibly take me away from work, my answer would have been, The Pacific Crest Trail or travelling the world for a year, but what has taken me away is that I am taking this time to take care of myself, and my mom. I don’t want to have to go to treatment again, I never want to have to tell my family I relapsed. I have a constant fear of this, and it is truly terrifying for me.

I was never the little girl who dreamed of finding a husband, getting married, and having kids. I have always been independent and self-sufficient, almost to a fault, living my life in near protest of it, almost as if I had something to prove. Or maybe just something to hide. I always knew that if I did happen to find that person it would have to a partnership, and someone who understood my independence, wasn’t scared of my past, could live with my current lifestyle of not being around alcohol, could draw my thoughts and feelings out, allow me to cry, to be the tough one, to celebrate my success and not be intimidated by it, make me want to share my life, and let me climb the mountains I love so much.

I found him, on the tallest mountain in Africa. When we first met I thought he was handsome, kind, quietly confident, self-assured and aware, and I remember not being able to tell how old he was. Over the next few days I was stuck by his patience, his ease with the locals, culture and language. He led our group of four incredibly independent, strong, wickedly funny, successful women without so much as breaking a proverbial sweat. We were on the mountain for seven days. He later told me he knew he loved me at camp two. But at camp two I was busy trying not to let my feelings show, maybe so I didn’t even have to acknowledge them myself. That day we all took a popular little side trip from camp. It was very busy and I was having some anxiety being around so many people, and the hike made it worse, I think he noticed that. When we returned to camp I heard him say to another guide, “I’m going to take her on a separate hike, she’s very active.” That awareness and kindness wasn’t lost on me. Our little hikes became a theme for the rest of the climb. This is where we really got to know each other, just the two of us, on little side trails on Kilimanjaro.

After the climb, we convinced him to join us all on safari. Following that, we both happened to have tickets to Zanzibar, so there we were able to spend our first time alone together. I have never had something feel so easy, right. In the following months, that has not changed, though so many things have not been easy. He was working and living at Crystal Mountain, me in Seattle. And now he is in Alaska, and me, in Seattle. But he has never once shied away from me, as I have with him, first because of our age difference (he is considerably younger than me), then distance, then because anytime I let someone get close, I try to push them away.

I know I am clearly still struggling with my ability to be vulnerable and at times I have even been willing to lose something that I care about so much because of it. That part of me has never made sense, and I am working today on why I can’t get over this wall or break it down. This is a theme not only with my partner, but family as well. I am never easy, add in my mom’s treatment regimen, the usual family dynamics, significant distance in a brand new relationship, all the opposite of easy. Yet he has never wavered, showing me his emotions, love and support all along the way, and not only for me, but for my family as well. I love him enough to cry in front of him, to ask for his opinion when making big decisions, to make us a priority, above myself. He gives me another reason not to drink, not to stay in my depressive tendencies, or act on them. He may not have experienced anxiety, or any of these other issues personally, but he cares enough to stand by me through them. And now I can let him which to be quite honest, feels foreign and scary and certainly does not come naturally. Just as I have to work on my sobriety, myself, my mental and emotional well-being, I have to work on allowing someone to love me, as I am. And believing that they will”

All photos courtesy of McKenzie Johnson

A Five Year Study in Grief

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This last Friday marked five years since our daughter died. Five years. Five years? Sometimes it’s so close to the forefront of my mind that it overtakes me. The reality of it weighs me down and my mind spins out of control. Other times I can’t put my finger on it being factual at all. It’s surreal. It’s visceral. It’s confusing, and overwhelming, and still unbelievable.

Each anniversary of her death seems to strike me in different ways. I never know how I’ll feel as the date approaches, but usually I’m OK. This year I wasn’t. I’ve come to realize the physical toll grief takes on me. And every year at this time I get sick. Headaches, fever, sore throat, sometimes vomiting. My symptoms seem to run the gamete, but no matter what they may be their cause seems to be psychosomatic.

Realizing this feels like a big step in helping myself mitigate these factors, or rather it should, but I’m not always able to mind-over-matter my way through them. Sometimes, usually in the week leading up to February 3rd I’m susceptible to them despite my best efforts to stave them off.

This year I cried. A lot. I felt an overwhelming sense of impending dread. I felt weighed down and unable to perform the most mundane of tasks that day. My mind swirled. It was scattered. I paced in circles throughout the house without reason. I lost my breath and suffered a panic attack. I prayed. A lot. I just couldn’t seem to be still or calm.

I granted myself these moments, moments I usually deny myself, to let it out, to feel my pain and sorrow. To be human.

It’s been so long since she’s been gone, much longer than she ever was here, that sometimes it’s hard to remember what our life with her was like. The fact that our life with her was all-consuming doesn’t change that fact. The fact that our life looks so drastically different now only makes it harder to connect to what it once was, in my mind.

Loren left for work, but not before asking if I was ok. Unable to put a brave face on this morning, “Just sad,” I told him. “I know,” he responded. He told me he loved me, kissed my forehead, and recounted that he was so in tune with my stress that he can always tell if something’s off.

An hour later I called him for no reason other than to hear his voice. I needed his comfort. He assured me he could come home if I wanted or needed him to. Gathering myself I declined his offer. I was determined to get through this day without further disrupting it for anyone else.

I forced myself to shower. It took a long time to go through the motions. I dressed, and eventually went outside to once again shovel the drive as it had now been snowing heavily all morning. It needed to be done, regardless of what day is was. The weather didn’t care.

In the midst of my shoveling effort my brother pulled up. He stepped out of his truck and presented me with a bouquet of pink and purple carnations.

I cried again.

Skylar texted and asked me to pick her up after school and go to the orthodontist because the wire on her braces had shifted and was sticking into her cheek.

Life keeps moving forward.

As she opened the door and got in the car after school she too asked if I was ok. Crap, even she can see it on my face, I thought. I’m normally much more adept at masking it. “I’m ok,” I lied. I’m sure she didn’t believe me. I struggle with wanting to tell her what day it is for her to share in remembering and honoring her sister, and vice versa to shield her from feeling the sadness I feel on this day if she doesn’t already realize the significance of the date on her own. I didn’t mention it further.

At the orthodontist’s office I waited while she went back into the ortho chair. I was the only one in the waiting room at this time, except the receptionist at the front desk. Once again, preoccupied with my own issues and becoming overwhelmingly emotional I began to cry. Noticing my obvious breakdown the receptionist came over to ask if I was ok. I lied again that I was fine, but it was a pretty poor performance so she leaned in to give me a hug. I apologized. I wasn’t necessarily sorry for making someone else uncomfortable, just for the fact that I was causing a scene and let my emotions get the best of me in public, which I am usually able to contain. I told her today was the anniversary of my youngest daughter’s death. She began crying as well and told me that her son died in June.

And there it was. I don’t have the market cornered on grief, even though I had been wallowing in my own loss all day. At least I knew she understood and didn’t think I was crazy.

Skylar came out. We finished up the appointment, and then the receptionist told her they were having a game that day. She told Skylar she could win a prize if she threw the beanbags through the hole in the board she was holding. Two out of three in and Skylar won a pair of movie tickets and a t-shirt. She was ecstatic.

A friend texted with her remembrances of Miss Elliott and commended me on always carrying myself with such grace in light of my loss.

Ha. Not today.

It wasn’t until later that I realized I hadn’t seen the staff at the ortho office offer this game to any of the other patients as they left the office that day. The receptionist had just been exceptionally kind due to my emotional distress. It reminded me that it’s ok to be human. It’s ok to show my feelings of sadness and grief. As uncomfortable as it may make me, sometimes it’s necessary to let it out.

By the time we got home my eyes were blurry and stinging so badly from all of my crying that out came my contacts and I wore my glasses for the rest of the night.

Walking in the door my husband tells my I’m beautiful. I laugh at his seemingly horrible judgement, but he means it. He truly believes it. Even in that moment with my red, puffy, makeup smeared eyes. He loves me fully; in spite of my flaws, mistakes, and the ways I’ve let him down over the years. It reminds me that even through the ups and downs, even in the midst of grief, being here at home with the two people who mean more to me than anyone else in the entire world, the only two other people who can share in this level of grief, as intimately as I can, is all I need to get by.

Breaking with Tradition

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Four Christmases. That’s how many we’ve celebrated without our sweet Miss Elliott at home in our arms. She remains now, only in our hearts and memories. A life remembered becomes a culmination of ever changing milestones from the moment your loved one passed.

In church yesterday our class leader asked the group about their sense of time, and how they measure it. Nearly everyone gave examples of moments like x amount of time since graduation, x amount of time since we were married, x amount of time since my children were born, etc. I remained silent, but in my head I whispered to myself; four years and ten months since our daughter died.

I whispered this in my heard for several reasons. One, the more time that goes by people seem to know your answers to questions like these before you speak them. They already know you’re the lady whose daughter died. Furthermore, they don’t like to be reminded about it. Second, it’s also so solemn that I wind up not wanting to bring down the group, so-to-speak. And third, I worry that when I speak these things aloud people will think I’m looking for sympathy, which I am not. You learn over time, that outsiders don’t understand your loss or grief and you tend to keep it closer and closer to heart.

Our society does not want to grief to be something brought out of the shadows that they have to face. They’re much more comfortable knowing, somewhere in the recesses of their mind that although it does exist, for others, they do not what to come any closer to its unpleasantness.

Milestones of any kind for those who’ve experienced a loss can be overwhelmingly emotional. The holidays tend to amplify these for many people. We developed our own new traditions to incorporate Miss Elliott’s memory into our holiday routines. Things that made us feel happy and were right for our family. A way to honor the fact that we are still very much a family of four, even if Miss Elliott isn’t physically present with us.

One of these new traditions was to set up our Miss Elliott Tree. A little white tree, lit with white lights, covered in pink and purple ornaments. Miss Elliott’s favorite color was pink. Thought she would eventually become blind, lose her mental and cognitive abilities, and never spoke a single word due to being born with Tay-Sachs disease we knew it was her favorite because her older sister, Skylar, five or six years old at the time assigned it to her.

For the last four Christmases we’ve made a point to purchase new ornaments for the tree each year, and Skylar has even taken to setting it up in her room. We would carefully unwrap each of these special decorations and hang them thinking about how they represented Miss Elliott and her memory.

This year, after Thanksgiving we finished up our traditional tree in the living room, a tree trimmed entirely by Skylar for the first time this year.

“Let me do it. I think I know where you want the ornaments and how you like them,” she told me.

Now in seventh grade and on the verge of teenagehood Skylar has watched me carefully place each of the perfectly color coordinated and themed ornaments over the years and wanted to try her hand – on her own. I agreed, and she did so with perfect execution. It’s wondrous watching her grow and evolve into her own autonomous being. A touch of myself, a touch of Loren, and wholly her own person.

“What about the Miss Elliott tree,” she asked?

“You know, I just wasn’t going to put it up this year,” told her.

“Oh. Are you just done with it, then?”

“I think I am. How do you feel about that?”

“I feel done with it too.”

We told Loren about our decision, and he agreed. That was that. None of us felt the need or desire to set up the tree any longer. It had served its purpose for us during those first few difficult years after losing Miss Elliott. I don’t really see it as any sort of advancement through grief with this fifth impending Christmas since her passing. I don’t like that kind of terminology because it denotes that one day we will stop grieving her loss. As if grief over losing your child were something to move past. That there is some sort of end point to it. Rather, like most things our ideas and feelings about it have changed over time, and continue to evolve year after year.

Miss Elliott still holds the same place within our hearts that she has since she was conceived. And her memory is still cradled just as softly there as when she passed. We honor her life in so many ways, but we no longer felt beholden to this tradition to do so. The little white tree decked out in pink and purple isn’t something I needed to utilize in order to celebrate anymore, and that’s ok. I still continue to hang four stockings over the fireplace. To me, it’s a reminder that we are, and always will be a family of four. I cherish this thought and it makes me happy when I look up and see the four of them hanging there together. In a very small way, it gives me a sense of peace.

If you are grieving a loss this year I hope that wherever you are on your journey you find traditions that are right for you and your family. Ones that help you have a little peace in your heart and add joy to your holidays. Whether that mean keeping up time honored traditions, putting them to rest, or discovering new ones altogether; there are no wrong ways to celebrate your loved one.

Extending Kindness Through Grace

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In the ten weeks following the two very risky emergency surgeries my dad underwent in August we’ve spent our weekends visiting him in the hospital where he remains, due to myriad complications, and is working on his recovery.

He is being cared for in the hospice portion of the VA medical center, and while we are hopeful he can come home for his remaining time, the outlook is not certain.

Each Friday after work and school both myself and my brother and our families drive the two hours to the VA to sit with him over the weekend. Each Sunday we return home for another week. It’s difficult being so far away, difficult seeing dad in there week after week, difficult on mom working, being there, and trying to keep everything running in the meantime. Of course, I’m no stranger to caring for an ailing family member.

Our life with Miss Elliott taught us so much about the precious and fleeting nature of life and time. And even more about kindness, both what we’ve experienced from others and what we can provide.

good-thoughts
There’s a pizza place around the corner from the VA. We’ve taken to eating there on Friday nights. We walk over, place an order for carry out, and bring our food back to dad’s room so we can all have dinner together.

This last Friday, as my sister in law and I were waiting in line, next up, deciding what to get for everyone a woman behind us asked if she could go ahead of us. We had decided, but were still holding our menus and she let us know she was just picking up an order. I said yes. It was no issue, really. A few more seconds waiting wouldn’t hurt.

After we placed our pizza order we took our to-go container for the salad bar over to begin constructing our salad. A man, who was apparently also behind us in line came up to us and said,

“So, I have to ask, did you feel obligated to say ‘yes’ to that woman’s question of letting her cut in front of you? I mean, that was a little rude.”

“Oh, I suppose. It wasn’t really a big deal though. I didn’t mind,” I told him.

“It’s like she was saying ‘my time is more important than your time,'” he continued.

“Maybe, but I’m really just practicing trying to extend grace where I can, so it was ok,” I replied.

“Well, you’re nicer than me,” he admitted and walked away.

It really got to me. What would I have gained had I denied her? It really didn’t interfere with my time. What if she was in a hurry? What if she wasn’t? Maybe she simply had bad manners, was impatient, or generally inconsiderate? It didn’t matter. None of it undid my act of extending a moment of grace to her through this tiny kindness.

We should never regret the kindnesses we’ve extended to others, only the ones we didn’t.

And why would this man have wasted the opportunity to act kindly? What would he have gained? Even if this woman was acting selfishly, does a kindness not counteract that selfishness? His unkindness would have only multiplied it.

I think the issue at hand is the idea that two wrongs counteract each other. Isn’t that the problem with society today as a whole? Haven’t we stopped giving one of our loves away when we have two? I think we tend to greedily keep both for our self. Instead of just being thankful for one days’ portion we’re constantly looking to store up enough for tomorrow too. The problem here is that we get to a point where we feel we can never have enough, and in the midst of our search for more for tomorrow we forget to look out for who doesn’t even have enough to get through today.

Maybe terminal illness helps you understand what’s really important, and conversely what’s not. I would argue that it does. It’s a hard way to learn those things, and luckily most people are blissfully ignorant to the difference in the two, but many of us were not afforded the luxury. Although, honestly, I think it’s another luxury in and of itself to know what it means go forth and try to spread goodness.

One of the ways I continue to honor our Miss Elliott’s life, and to spread Tay-Sachs awareness is to give out Random Act of Kindness cards.

Front of Card

Back of Card

It just so happens that we had given some out, attached to some bags of candy for the nurses and family members in the hospice center that evening. I wished I could have given one to the man in the pizza place, but I’ll just have to hope my words to him about grace will have sufficed. I hope he carries them forward and finds a way to exercise extending grace to others too.

What it Feels Like for a Woman

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Key the whining and complaining. The ugly-crying and drowning of sorrows in a pint of mint chocolate chip. The “Man-Hating”, and ultra-feministic points of view. You know, or whatever stereotypical depiction you may have envisioned in your head.

While the following post doesn’t necessarily follow the mission of this blog, which is to put forth everyday experiences and information about “Grief, Love and Life After Loss”, it is my blog so I’ll indulge my creative whim and also attempt an (admittedly weak) tie in, but as the mother of daughters, it’s a form of grief, and very real fear in life I have for her. Yes, her, not them. If you’ve read any of this blog before you’ll know I have one living daughter, and one who has died. If you’re a new reader, I encourage you to read more about our Miss Elliott, whose beautiful but ultimately too short life was the inspiration for this work, as well as her book: Three Short Years

As women, we’re barraged by shoulds constantly. A woman should be ____________. You decide. But don’t worry, if you can’t (and really, why should you worry your pretty little head over it?) someone else will inevitably fill in the blank for you . We’re told to smile more, but not too much. Be strong, but gentle. Speak up, but don’t be loud. A woman should be all thing sugar and spice, and everything nice. A woman should Lean In, but not make a habit of wearing too many pantsuits. A woman should…oh geez, even I’m getting tired of reading this…and I could go on and on.

Yesterday on a call for work I was speaking to a grief counselor local to the area we’ll soon be hosting our next conference and asking her about helping to facilitate some of the sessions we hold for grieving parents. One of her quotes, in particular stuck with me:

“Don’t should on yourself.”

Yes!

So here’s the point I’m getting at: don’t take a snippet of a woman, her attire, her expression, her anything, and tell her who she is or who she has to be. You don’t get to decide. And what makes you think that who you view her as is a relevant factor to her, anyway? And women, listen up: none of that needs to determine your self-worth. YOU decide…that’s why it’s called SELF worth.

I was frustrated after what was just an otherwise boring trip to the grocery store, when my husband called and asked how my day was going.

“Just another incident that reiterates how difficult it is to be a woman in our society today,” I told him. Please let me clarify. I know that in the United States we (all of us) are afforded many basic rights and needs that are often denied to others. I have no political agenda in this post, and this is not a global issues blog. I’m just opening up from a human perspective of very small and ultimately inconsequential happenstance in my own life.

While rounding a blind corner with my cart I nearly collided with another patron. It was neither of our faults, but being a generally courteous person and upholding a very low level of human decency I said, “Oh, I’m sorry, excuse me!” and smiled.

This must have been where I went wrong, but women smile sometimes. It’s not an invitation for anything. It doesn’t mean we want you. It’s just a pleasantry.

“You don’t need to apologize for anything,” the man said. “And besides, you’re really pretty. Do you know that?”

“Oh, well thanks,” I sing-song cooed over my shoulder as I tried to keep going.

“No, you really are. And I know how long it takes to do all that hair and makeup stuff because I watch Amy Schumer. Do you know who she is? She’s a little crass sometimes, but she tells us guys how it is and how much work it takes so I try to work it in to my compliments and I just wanted you to know that.”

WHAT? I think to myself, feeling pretty creeped out.

“Um ok, well thanks again…” I spat out quickly and I was practically wheels up rolling away as fast as I could (before he said something else) while he just stood there watching me leave, wondering if this creepy dude was about to follow me out to my car.

I was wearing my super chic ripped jeans and a striped tee, by the way, so you know, all that effort and all…

Be friendly, but not too friendly. Smile, but don’t over do it. You don’t want to be a bitch, (which is what someone will inevitably call you if you don’t conform to their momentary standards), the voices swirl.

All these things society continually puts on women, and here I was reiterating to my husband how due to nothing more than probability in genetics he will never have to know what encounters like these make a woman feel like. He won’t have the onslaught of unwanted and unwelcomed interactions that most women contend with, often daily.

Last week my best friend went to her regular tanning salon. She checked in and waited for the bed to become available. A man at the desk said to the clerk, “So you’re gonna give up my bed to her?” “Oh, I’m sorry. We’re you waiting for that bed? You can go ahead of me.” she replied. “Nah, I just thought maybe we could share it.” he retorted, and smiled, obviously proud of himself for such a witty come on.

“And that’s how daddy and I met,” #saidnowomanever (Google this hashtag if you’re not familiar with it).

boxing-woman

“Uh, no thanks.” she told him. Suddenly he wasn’t smiley and suave anymore, but instantly became sullen and rude.

Though they may seem anecdotal, stories like these are an ongoing issue for many woman. Interactions that should be of no consequence whatsoever become a source of stress and discomfort and unfairly put women on the defensive. They cause women to question their everyday actions such as how they do their hair or makeup, what they wear, where they go, who they interact with, and how, etc. All of these factors, amongst many, many others contribute to what it feels like to be a woman in society today, and perpetuate the victim blaming mentality.

Without going completely off topic on another tangent, this reminds me of the best anti-rape article I ever read. It explained that when we tell our young men and boys the reason not to rape a woman is to think of her as your sister, mother, daughter, etc. all we’re doing is reaffirming who she is in relation to a man. The real reason to not rape a woman doesn’t have anything to do with who she is to them, it’s because she’s a human being, all on her own.

So? Don’t should on yourselves, ladies. Don’t apologize for your existence. Chauvinism may be alive and well, but in the immortal words of Meghan Trainor:

“…listen up…lick your lips and swing your hips, girl all you gotta say is…”

NO!

Then turn around and walk away, tall.

Help: On the Horizon vs. At your Door

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It had been a particularly trying day. Disastrous, really. I had come home from grocery shopping in the middle of winter to find frozen pipes that had busted and thawed, and water was now gushing from the ceiling in my laundry room onto the wood floors below.

The valve to shut the water off to the whole house had frozen in place outside in the ground. After struggling unsuccessfully to wrench it free, I deemed it a lost cause and ran to the garage where I dumped the Rubbermaid trashcan full of garden tools onto the floor and frantically ran to place it inside the house to catch the water pouring from above. I opened the back door and began sweeping the water covering the floor outside.

Then I called my husband at work and screamed through frustration and tears into the phone; “GET HOME NOW”.

Taking to social media later in the day to lament and seek out commiseration, I suppose, I quickly had a message from my friend, Halcyon.

“Can I bring you dinner?” she wrote.

My immediate instinct was to respond with a no thank you, a how thoughtful, or that I appreciated it, but we’ll be fine. Then for some reason, I just accepted. I did want that dinner. It would help. It would be one less thing I would have to worry about in the midst of such a terrible day, and it felt like a win.

We were no strangers to acts of kindness at this point in our lives. Our daughter’s terminal illness and death were humbling in ways we never even considered needing to be humbled before her life, but the general idea of utilizing the village before you seems somehow, almost un-American. As if accepting help is an admission of our inability to pull ourselves up be our own bootstraps, rather than an act of love and concern for other humans that makes the world go ’round.

She brought warm soup and fresh baked soft bread from Panera (one of my favorite places). It was delicious. And so appreciated. The real gift she gave, however; was not the meal itself, and not even the act of caring, but the outreach she exercised to begin with. She didn’t let me know she could help if I needed, she didn’t even ask what she could do for us. She took action, and offered something specific, something concrete. She then placed it in a time frame and set to work on following through.

When facing life’s challenges, simply wanting to help or letting someone know you’re there to help is often not enough. Don’t make vague statements or plans that don’t amount to anything. While the thought is appreciated, the action always speaks louder.

When someone is struggling with a difficult situation, the burden of need is already on their shoulders. Don’t add to their overflowing plate by asking them to tell you how you can help. Often, it’s just too much for someone to even consider tying to navigate the map of help-need to be able to organize or convey those needs to you.

Perusing social medial recently I found a message from a friend, posted on her personal page, as a cry for help. She posted the following picture with the message, “Definitely me sometimes”.

rsz_quote_2 (1)

What followed, to be honest, as someone having been in need myself annoyed the crap out of me. The response, even though positive, genuine, and seemingly in an effort to be supportive, just wasn’t.

rsz_1quote_message

Simply telling someone you’re there for them simply doesn’t do anything. If you’re going to talk the talk, you’d better be willing to walk the walk and actually be there. Don’t wait for a friend to ask for help. They are already overwhelmed, so they most likely never will. Just take the initiative and go out of your way to be there without waiting to be asked.

I specifically remember the phrase “we support you” being uttered to us repeatedly when Miss Elliott was alive. How? I always wondered, because with certain people those words seemed to be all there ever was. Nothing to back them up, no outreach, no follow through.

What was interesting to me about the respondent’s message to “call me” was that someone else, yet another friend, liked the comment, in what I can only assume was a show of solidarity, or a me too response. But even when my friend reiterated that she always needs someone, and implores her to please just come over, the respondent again defaults to asking the person in need to call her.

Don’t do this. It’s painfully obvious that this person should have picked up the phone at that very moment. Should have gotten in her car and driven over. She should have done anything worthy of being called helpful, but what happened here instead was that this person did, literally the least she possibly could have done, and probably mentally checked off a box in her mind that allowed her to continue in her thinking that she reached out, did good, and helped. She didn’t.

Sometimes in our attempts at care toward others we place them into our box, our comfort, zone, rather than stepping outside of that zone ourselves to look deeper into what they really need. I think we usually just tend to look for what may be easiest for us to offer. We fail, so often at truly going that extra mile.

This interaction would have left me feeling even more alone.

There are many things that everyone needs, so make a list of what would help you because chances are, it would help someone else too. Some simple suggestions of ways to help that I like to give are:

Mow the lawn
Wash and fold the laundry
Clean the house
Let them take a nap or get a hot shower
Bring dinner
Take the kids somewhere for a bit (a movie, to the park, etc.)
Bring groceries
Run errands
Help coordinate appointments
Go to their house to visit
Help them have a night out aloneand most of all
Just listen without trying to fix their problems

Grief Doesn’t Die

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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.

Better Than Me

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“She’s beautiful!” they tell me. And I know she is, not just in my eyes, but by all conventional American standards, she is. Chestnut eyes, straight nose, high cheekbones, supple lips, long flowing dark, but sun-kissed hair, and easily tanned skin. She’s gorgeous.

“She’s a mini you, gorgeous like her mommy”, they say.

“Daddy’s got his work cut out for him,” they continue.

“Hope he carries a bat”, it goes on.

And it’s fine. I beam with pride at the shallow, and ultimately meaningless compliments, like any other mother would. But she’s so much more than that. And that’s the true, total package. She works hard, brings home straight A report cards. Is artistic, and creative, and thinks outside the box. She’s a friend to everyone, caring, compassionate, and thoughtful. Easy going, quick to lend a hand…obviously I could go on and on.

Skylar

Skylar, Age 11

My point is, that I relish it as my own success. As a mother, I want nothing more than the best for her and for her to be the best, at everything. I’ve never understood the theory that mothers and daughters clash because once a daughter comes along the focus is suddenly taken off of the women who had it on her since childhood. Essentially that her mini-replacement has come along and she’s no longer the star of the show.

What?! As a mother I truly don’t understand this. And I think if you feel that way, you probably shouldn’t have had children at all, at least not in this stage of your life because it seems to me that if you aren’t able to put them before yourself you can’t have their best interest at heart. I want my daughter to be prettier than me, stronger than me, smarter than me, and more successful. I want her to have it ALL.

“I’ll bet she looks just like you at that age, Becky”, someone recently told me. Ha! She couldn’t have been more wrong. I was gawky with no style, big glasses, and a bad perm. No, my daughter seems to have not had to endure the same awkward phase that plagued me from the ages of eight to fifteen.

Me Age 10

Me, age 10 with mid 90’s
style choker and Seinfeld Puffy Shirt.

Conversely, I’ve also endured comments related to my daughter’s looks as more of a consolation prize rather than a compliment. When Miss Elliott was alive, I distinctly remember one person, upon learning of her terminal status remarked , “Well she sure is pretty, and you can love her anyway”.

WTF?

I mean, thank goodness she was pretty too, right…or there would be no reason to love my dying child as I love my heathy one.

Miss Elliott, age 3 years 3 1/2 months

Okay, I know people don’t mean the stupid things they say to sound so ridiculously degrading, but honestly it’s so tiring that sometimes I would rather they just stay silent. And if they simply can’t muster up that ability and feel compelled to have to say something, let it be a simple I’m sorry.

I know you can’t imagine. I know you don’t know how I do it. I know (insert your own meaningless platitude here), but none of it matters or changes the situation. A simple I’m sorry, is really the only thing of value you have to give me anyway.

And for the record, Miss Elliott was pretty. She had bright green eyes, milky smooth skin and hair far lighter than I could have ever imagined any of my children being born with (all three thanks to her Daddy’s Irish ancestry). And I loved the hell out of her. I still do.

And I wanted better for her, too. Better than for me. And do you know what? She got it. She knew nothing in her Three Short Years but unconditional love. She never endured pain, rejection, or abuse. She lived and died a perfect being with a pure soul.

These things, more than just our little girls being pretty should be what we celebrate as accomplishments in parenthood, and life.

Memories of a Lifelong Crusade

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Memories tend to spring up in unexpected places.

Some recent remodeling led to our reorganization of the bookshelf in our downstairs family room. As we were sorting through our treasures, deciding what to keep and what we could bring ourselves to part with (as we tend to be book hoarders, and as such there were overflowing piles stacked against the shelf along the floor), I came across an anthology from a local library contest I had entered in 2011. In it was the poem I had written specifically for the contest about Miss Elliott.

At the time I wrote this poem Miss Elliott was still alive. Our lives were consumed with her care, in the best possible way. I railed against the pitying looks and downward glances I caught in the eyes of others as we navigated our days. My drive and desire was to share with the world how wonderfully beautiful, how extremely important her tiny life was. And to rid it of its feelings of sorrow for us. It was the same drive and desire that would lead me to write my book about her life after she had passed. Purchase your copy of Three Short Years here.

Reading the words I had so carefully crafted brought these feelings flooding back. It was always clear to me that I was to be her voice. Although I still strive to educate others about Tay-Sachs disease and share the story of her life, my platform has changed dramatically from when she was alive as I now carry on in her memory rather than for her honor.

One of the key pieces of information I was determined to convey to the world was that her life may have been different from most, from what was expected, but it was not in any way bad. It was not sad. It was full of unconditional love. As a parent, I feel that many of the things we hope for our children, which the world will inevitably rob them of, were freely granted to Miss Elliott. She was never to know rejection, disappointment, abuse, fear, or unrequited love. She never toiled through pain or loss. She lived a life of nothing but love, acceptance, and care, and she died with a pure soul, having never even unintentionally harmed or disappointed another being.

Sketch Original sketch artwork of a Soulumination photo of Miss Elliott.