Tag Archives: Women

Running Away and Joining the Circus (and Finding Myself in the Process)

I first met my dear friend, Shelly Ogden in the most unfortunate setting; the hallway of a hotel in St. Petersburg, FL after our first session of the NTSAD Annual Family Conference in 2010. We were both attending for the first time. Miss Elliott, who had infantile Tay-Sachs and Kaleb, who had infantile Sandhoff were nearly the same age, and had both recently been diagnosed. What I remember most clearly is Shelly stopping me in the hallway and telling me that she just wanted me to know that I was saying all the same things in that session that she was feeling, but couldn’t bring herself to say.

The thing about living with these rare diseases, and impending loss is how instantly, and how intimately the bonds we parents forge are. Both Miss Elliott and Kaleb died in 2012, and while Miss Elliott died in February, Kaleb died on October 3; Miss Elliott’s birthday. Shelly texted me early that morning to let me know that Kaleb must have wanted to go be with her to help her celebrate. I was gutted for her.

And the thing about outliving your medically fragile child, is that in many cases you’re suddenly, nearly completely lost. When your everyday life revolves around continuous care, medications, positioning, appointments, therapies, etc., the silence can be deafening. Constricting in your lungs like a lack of air leaving you writing in pain, desolation, and despair.

As Shelly shares below, though she couldn’t run away from the pain she was feeling, she was desperate to find a reason to be, and to find meaning, and value in her life. She was desperate to find Shelly again. And she did so, by looking in the last place she would have expected to go searching:

“I ran away and joined the circus after the death of my son. Okay, not really, but let me explain. Kaleb had infantile Sandoff disease and died just eight days after his fourth birthday. Grief can consume you, especially when you are grieving the loss of a child, if you let it, and I was determined that I was not going to let it. I never wanted my surviving child, Christopher, to feel like his life was less important, so I decided to show up for him, and continue to live for Kaleb, who didn’t get that chance. Even when I didn’t want to do it. Even when it was a struggle to make myself do it. I owe that much to the rest of my family – and also to Kaleb.

Ogden Family

After his funeral, when family went home, and Dave went back to work I had nothing. I felt lost. I felt like I was wandering without a purpose. I’d go window shopping to kill time but even that was too hard. I’d see a mom walking with her son and I’d literally have to run out of the store or risk breaking down in front of everyone. I then found myself making daily trips to the cemetery because that is where I felt close to him, and because I couldn’t stand being inside our empty house. On my way back from one of those trips, I stopped into a women’s only dance studio and bought a membership. I decided it was time to start taking care of myself. I thought I’d start off easy and attend an aerial yoga class, but when I got there, the instructor warned me that what I was about to take was an aerial silks class. I was already there, and I didn’t know the difference, so I decided I’d stay.

Little did I know what I was in for. I am a retired law enforcement officer, and I’ve been through some tough training but this class was the most physically demanding Shelly Aerial thing I’d ever done. First and foremost, I am afraid of heights which was a challenge. The silks physically hurt my feet, and my forearms, hands, and biceps felt like they were one fire. My entire body was screaming, but for one hour I found that I could focus on something other than the pain in my heart, and that was an amazing feeling. One thing I have discovered, as I dove head first into the world of circus arts, is that the more I learn to “fly” the closer I feel to Kaleb, I no longer feel the need to visit the cemetery every day.

The friends I have made in the aerial world are some of the most supportive and caring people I have ever met, and they’ve changed the way I look at a lot of things. My first instructor, Jessie, played such an instrumental part in my healing process. There are countless times when she would sit with me and just let me cry on her shoulder, which was very therapeutic. She’d encourage me to join class when I was ready during those difficult days where I felt like I was constantly on the verge of tears, and I always felt better out of class.

This past August, I asked my current instructor, Lauriel, to choreograph a piece for me to Danny Gokey’s “Tell Your Heart to Beat Again”. I told her I wasn’t the kind of person who could perform in front of an audience, but I wanted to record this piece and post it on social media in honor of Kaleb’s angelversary. I explained that this anniversary would mean that Kaleb would be gone, longer than he lived. What she came up with was even better than what I expected, and was packed with so much emotion. I was so proud of what she had done and when I finally got it recorded we sat together hugging each other and crying. The release of having finished it, was more than just finally recording the piece, but the emotion of the song and the action that was put into the routine all hit me at the end.

I have always been the quiet observer, the wall flower if you will. I like to see everything going on around me, but I prefer to stay out of the lime light, until recently Shelly Circus when Lauriel talked me into performing. I stepped out of my comfort zone and become a performer equipped with identification that titled me “Talent”. So, for one night, I joined the circus, and the spotlight was on me. It was oddly both terrifying and exhilarating at the same time. I was bolstered by the fact that my oldest son and husband were in the audience to support me and I know Kaleb was in the air right next to me.

I’ve decided to continue to live even when my world has been turned upside down. It was a choice I had to make, and it didn’t come easy. Some days the grief is crippling, but I think about the life Kaleb had to live, one that left him paralyzed, in silence, tormented by seizures, unable to enjoy the taste of food, and he reminds me, if he can do that, I can do this – I can live fully and honor him. I have discovered that in order to navigate through life after the loss of a child you have to find your “thing,” your passion. My faith gives me hope, my family gives me a reason, and my aerial world gives me wings.’

“There is freedom waiting for you,
On the breezes of the sky,
And you ask, ‘What if I fall?’
Oh but my darling, what if you fly?”
Erin Hanson

Pain, Power, and Finding Love on A Mountain Top

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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

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.