Tag Archives: Inspiration

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 Aerialthing 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 Circuswhen 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

 

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Onward, Soldier. Onward In Love.

The dark does not my steps impede
Your memory, now the guiding light through my crucible
My drive, steeled by the absence of your beating heart
to seek out a world of love and hope
They must connect;
future born of past
in order to become new
To rise after the fall
To toil evermore
Growing
Searching
Reaping for all mankind

Us

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. 

 Mac2

       “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.  Mac6Mom 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. 

Mac5

        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.

        Mac3After 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