Tri-Umphant Living

Hello From The Other Side

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This morning I sat in my car as tears streamed down my face; wending myself away from our home. Numb from the heartache and the profound disconnect between the goings-on of daily living and the sadness I feel about our lives right now. I reach for the volume and turn up Adele’s harrowing voice belting out “Hello.” Her ache relieves me from my own tired aching. I turn it up louder. There is a hollow heartbeat in the drumming of that song. It’s faint but steady. If you turn the sound up loud enough you can feel it gripping your own heart’s dependable rhythm and unburdening it from its post for barely a moment. I seize the moment. Latch on to it. My moment. And another. As I hit repeat again and again. Unencumbered from myself for a blissful moment.

“Hello from the other side … Hello from the outside … There’s such a difference between us … And a million miles … “

My car vibrates with the volume cranked up to the max. My heart has lost its own beat as I surrender to this song. Its music and Adele’s voice “… A million miles between us … Hello from the other side.” All I can say is, Yes. As I sing with her. Tears falling. It feels that there are a million miles between me and my husband. No one talks about this. The fighting that goes on when vulnerability and fear are at their apex. When sickness has saturated the very fabric of our beings and we know no other way of living anymore. It takes up space like an unwanted houseguest that just won’t leave.

“I’ve forgotten how it felt before the world fell at our feet …”

We both feel misunderstood. Unseen and un-held. All of this is greatly compounded by the fact that we have very different coping skills. He proceeds with life-as-normal at all costs. I fight the urge to be paralyzed by the pain. A sure-fire trigger from my childhood — living with the pain of sexual abuse but being expected to proceed with life-as-normal: “Do not let on to the abuse. You are not abused.” For me this is the mind-wrenching disconnect that I cannot employ. I did this already and I can’t pretend that life feels okay when it’s not.

Rob continues to ride his bike. He swims. This morning — after a seven-hour infusion yesterday — he woke hours after I did and greeted me in the kitchen with his workout clothes on. Singing. My jaw dropped and instead of being supportive I let vulnerability and fear get the better of me. I cried out, “You cannot get up to help with the kids?! I’m sick with this awful cold and was up all night … and you cannot get up?! But now you’re going to swim?!” And the shit, as they say, hit the fan. Because honestly it’s easier to fight about petty things than feel the real stuff. Fighting is the grand distractor.

Rob works long hours and takes on more cases. He proceeds at full-speed-ahead because doing so enables him to feel that he is okay despite his all-consuming pain. He gets to feel that he still has a say and is still calling the shots in life’s driver’s seat. If I sit back and really hold this in my heart and head, I know that if I had a spouse who fell crippled by his disease, I would in truth be terrified. I want him to fight and to be strong. But the other part is that I can’t explain how this completely messes with my mind. How can you be in so much pain that you can’t even work a zipper, and yet you can go for a swim? And even as I ask this question, with some space between us and some distance between our morning’s fighting, I deeply understand it too. I do. Just as he understands my confusion. He does.

It is the discrepancy between our coping styles that leaves me rattled and alone in my fear. Like I’m yelling out to him through bullet-proof glass, sobbing and calling out in anguished, muffled screams he cannot really hear. He can see me but he can’t reach through the glass to embrace me.

“Hello from the other side!” We have miles between us. “There is such a difference between us!” Our love acutely binds us and we are intertwined within the very framework of our life’s foundation. I have lived more years with him than without him. But the disconnect in our coping styles is leaving me winded. To me, we feel like fragments of ourselves as we trek along the same route but on different paths. Sometimes we intersect. Usually at the end of the day when we sit and reconnect. Careful not to unpack our backpacks completely. For fear we will alienate each other too much with our heavy burdens of misunderstood-ness. Like magnets that have inadvertently been flipped and keep repelling each other as they desperately try to connect. Like that. 

“Hello from the outside … ” My heartbeat will resume its own rhythm. Even if it needs the distance to find its cadence once again. For now I’ll just blast Adele and hold on to hope. And love within the difference between us.

 

 

14 replies »

  1. The way you write brings me right there. Riveting even in the sadness of a suffering partner being strong in spite of his illness. No wonder you bellow, though the words might not match the true terror you must feel. Pick at stuff that does not matter because the real stuff is too hard to say. We take health for granted until we don’t have it. I am sorry you are going through all this.

    Liked by 2 people

      • As exasperating at is at times, when two people react differently to a situation, one can pick up the other and vise versa. Balance and equilibrium can be maintained. If both fall apart at the same, well, what a mess. Samuel and I are like two worlds that collide at times but mostly are off in their own universe, but when it matters, he is there, that’s what counts.

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  2. Since I have the same disease as your husband, I understand how hard this is. My husband does not get it, and never will. There is a a great article that I am giving you the link to. Unless it is you with the chronic illness, it is very hard to really understand what it is like. And if you hubby is like me, I HATE how much control I have lost and will continue to lose. Be an advocate for him and a friend.
    http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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    • Thank you, Jane. This is a good article and sheds a lot of light on what it’s like to live with a weakened immune system, fatigue and chronic pain. I had to sit with it for a bit, though, because I found myself feeling a little defensive. I wondered if you were implying that I am not supportive of Rob? But instead of holding on to that, I decided to appreciate the article, your gift of sharing here and to be accountable for my own vulnerability.

      One thing I feel that I need to make clear is that I would never want Rob to give up his control. He needs this both because of his driven personality and simply because it is part of being human. I want him to continue training and being physically active. I also want him to be able to perform at work in a way that brings self-confidence and pride. I wouldn’t want him to lose these parts of himself. It would be frightening for both of us. And lately he’s teetering on that edge — what I perceive to be his body begging for a rest and him not listening.) He isn’t merely exercising or moving his body. He’s training for Ironman triathlons on a competitive level which require a great deal of time (between 12 and 25+ hours a week depending on the training cycle) and stress on his body. If we use the spoon analogy — that’s using a lot of spoons (energy!)Way more than 25.

      And Rob doesn’t live alone in a bubble. No one does. He is a father of three young children and a spouse; if he is using up all of his spoons (energy) for training and work (which also are ways of avoiding coping with the stress) then there are no spoons (is no energy) left for daily living. And while I don’t have a debilitating disease, I do not have an unlimited supply of spoons (energy). NO one does. So the choices of his spoon (energy)allotment affect our family of five. I think, more than anything, what comes to light for me is that we simply need more hands to help us hold more spoons. Some help with household tasks that get sidelined because we are both too exhausted to stay on top of everything.

      There is an important piece that is neglected in this article and that is the role of caregivers, loved ones and family members. There is a ripple effect in all choices that we make. I realize I’m sending a mixed message — encouraging him to do what he needs to do but also saying, man I’m out of spoons (energy)and I’m using most of mine to hold fear and worry while it looks like you’re going on with life as normal. The spoons he chooses to hold (the energy he chooses to expend)affect all of us.

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      • Yes, you are right that his choices do affect all of you and I encourage you to have that discussion. I used to play competitive tennis, three to five times a week, swim daily, garden, bike ride and hike. I cannot do any of that now except swim once in a while. I did all the housework and mowed the lawns ( with an old mower) and tended the gardens. Then I could not. We fought terribly about it and I know my husband was angry at me for asking him to do more and more. I was angry because I expected him to pick up the slack but he had only so much energy too. Just like you two have. I had to hire a housekeeper and a gardener because the burden was not fair to my husband. Fortunately I could afford to do so. You both spend an inordinate amount of time doing Ironman training, which I understand is grueling. One day he won’t be able to. From what I hear you write, is that you seem angry he makes the choice to put his energy there and not with you and your kids. I am sure that hurts. But you should talk about it. I wish you both well.

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  3. Dear Me,
    We have a friend who is at that place in her life where living can at times be overwhelming.. How do we tell her we understand? That someday soon, life will get better…to endure. She knows endurance…. And like most endurance athletes, we all lose it now and then when unplanned things happen.. It’s normal. Maybe she knows this already, so let’s just say “Leave the spoon, take the Cannoli’s”….spoons care part of the meal but when the meal is over ….dessert! Me

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  4. Oh you made me smile! Does cheescake count? I had a monster slice yesterday with ginger tea (because you know I love tea) and nursed my cold. I’m going to just keep showing up and waiting for the winds to shift. It’s hard for me to apply myself to my training but showing up counts. 😉
    Love you, Don. Thank you!

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  5. I love Adele’s hello and love that you are so brutally honest about your deepest fears and thoughts. Just acknowledging it lightens the burdens and being able to write it here and get the support from people who love and understand is even more powerful. You are very clear about what you feel and where is comes from as difficult as it is to feel the feelings, but you are doing it. You are feeling them bravely and singing through your tears. I hear you and am here.

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  6. Oh Jessica, I relate to a lot of what the two of you are going through. My husband and I do not deal with illness the same way. The way he pushes through pain and believes that his mind has complete control over his outcome triggers me in ways that I’m just starting to understand. My husband had knee surgery a year ago and I was both frustrated and relieved that he didn’t want me to take care of him. What complicates it for me is that when I was a little girl, the only time my mom would give unrestrained care/love was when I was sick. So when my husband pushes through and holds onto his sense of control, it triggers something in me. I have no words of wisdom, only love and respect for your struggles. ❤

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    • Karen, thank you. You helped because you understand the triggers and how they completely complicate things. It’s hard to see clearly and because I resent the triggers I end up spiraling a bit. Thinking, “If I were a better person, I wouldn’t feel this way.” And of course those thoughts are a recipe for disaster.

      I think, more than anything, I need to step back and appreciate that this is a lot. It just is. And so of course we’re going to be afraid and vulnerable and have to work hard to figure it out. Thankfully I’m leaning to articulate what’s happening for me so it’s helping.

      I did have just about the worst shame spiral I’d had in a long time after posting this which gave me a lot to think about. I’m always grateful for your comments and shared experiences. Much love to you!

      Liked by 1 person

  7. Your writing is exquisite. And I so get this. I’m also at this point in my relationship. It’s somehow soothing to know I’m of the only one.

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