Chronic Beauty-"For Better or Worse"
No one can prepare us when we stand together at the altar for what that really looks like. We romance the wedding day with preparations that take years, months or in my case 10 days. It was my second marriage, I had cancer and had gotten out of the hospital 3 weeks earlier and doped up on morphine so ya I was a fun bride! There we stood with friends and family (well a few important people were missing) saying vows we created and traditional vows. I remember thinking that day (even with the haze of my Fentanyl patch swarming through my bloodstream) that this was God's way to bless our broken roads together. He had tears in his eyes as he saw me walk down the aisle, he washed my feet as a picture of servant leadership and we invited our children up to join hands and share the gifts we saw in them and our promises for our new blended family.
Would we have done all that if we only knew worse could get worse?
We started out with already a few strikes. 5 marriages between us, 3 kids, 2 baby daddy's, blended family, cancer, abandonment issues, codependency issues, suicide, rejection issues, addiction issues and years of stories (& secrets) that we only heard but never experienced together. Let's be honest knowing the future would hold us back from starting new chapters. The beginning of something always seems to hold magic and mystery. It creates a sense of wonder and fires our neurons which causes us to feel that THIS relationship will be effortless, THIS time it will be easy, THIS time I made the right choice....but did we? People often get to the rocky places and search for the ways this person was wrong for them now, those moments of kismet were fantasies in their minds and did they really mean those words at the altar?
Let me share a little of our story as I begin to work on a series called Chronic Beauty, a Day in the life of a caregiver and the chronically ill:
Things have gone completely sideways since 2015, I was lost as I walked through cancer and so much was ripped away that was sweet in my life. For anyone that has lived a while, I think we would all agree that life is hard, maybe too hard at times. After my own traumatic health experience, it felt like salt in my wounds as my new husband and I walked through 3 years of a jigsaw puzzle of pain that at times felt hopeless and dark.
Watching movies has always been one of my favorites escapes. We all have them so don't judge. For some, it is alcohol, exercise, video games, porn, shopping and heck the phone is the newest drug of choice. I have always escaped my reality for a movie. The plot of most movies is bad guy meets good guy they battle for something- a person, money, power and then ends with some message of hope, inspiration, truth. Most of the time there is some relationship in your face, with passion and sex and all the romance of the early novelties of new relationships. This began to deeply sadden me and unfortunately, I have no desire to drink, dislike shopping, loathe sitting at a computer and my physical capacity to exhaust myself at the gym had been removed unless I wanted to hire a chiropractor and massage therapist every week. Movies became difficult to watch but one afternoon I found an old one I loved (Sweet November with Charlize Theron) and thought it may comfort me with its familiarity. BAD IDEA!! Watching Sweet November started to remind me of my deepest longings and desire for connection with another human being, especially a man. The moments of my life I am most alive is when I am sitting face to face, eye to eye sharing my deepest parts with complete surrender, safety, and vulnerability. The greatest gift in the world is to feel "gotten" and it seemed to be a long time that I felt like someone wanted to know me and truly "got" me.
I was a lonely woman in my house. This house brought me so much healing for years and I worked through some tough hurdles and was at my own sweet place. A place where I found who I was, a person looking to be a partner and not look for another to support, fix and complete me BUT was ready to share life with someone.
What I experienced that movie day and most of the days of our marriage was loneliness. Loneliness screams louder than a foghorn when you are with another human compared to when I was in the house alone. I had lived alone with my boys for years but felt fulfilled in my friendships, motherhood, work etc...but living with a chronically ill person made me sad and lonely and frustrated most days. I was not naive that there would be challenges in marriage but there is no playbook for navigating chronic illnesses especially at the season of life we were in, I was still full of desires and dreams especially as a Cancer Thriver. I had to work really hard at keeping myself healthy in an unhealthy environment. I didn't know how to live like this, I mean how do you disengage from someone who lives with you? Someone who is in horrific physical & emotional pain and thrusts his anger at you, threatens divorce because of his own fear of inadequacy as a husband now, disrespects your boundaries and seems to have pulled a bait & switch on the values you thought you shared?
I am angry at myself for getting so lost, but then I also know that I need to be gentle and give myself grace because I have been a devoted wife, a helpmate, a shoulder to cry on, I have quieted myself when I wanted to scream and allowed myself to surrender and allow my selfish parts to slowly disintegrate...but this has also created a void, a detachment of who the hell I am now through all of this. I fear to have a voice because I don't want to deal with the repercussions of neglect or negative reaction so I say very little. I feel robotic in my life and have suffocated the passions I once had so I will no longer feel rejected. Yet, I am human and have bad days, I have frustrations and I have grown tired of the darkness that chronic illness brings. I am weary and sad that I am sometimes not aware of how to handle my boundaries being pushed, not aware of what is inside of me, not aware of the disrespect and lack of consideration of my humanness.
My home was a place of peace, that was what I created. Cancer began to erode that foundation and the rare diseases of CRPS, PTS and PTSD tore down my husband in a devastating way. One person lost is bad enough but two is a trainwreck. As a caregiver you start to believe that this sick person is a taker, a fraud, a con artist, a victim, you feel hatred. You muster up the compassion and empathy but so often you are drained because there is little light and your feeble attempts seem to annoy the person rather than encouraging some shred of humanity back in their face. As the ill person (I can speak from both sides...LOL that makes me laugh) you feel a tremendous amount of guilt and shame and fear the burden you are placing on everyone.
So standing at the altar that day I felt security I had not had in a long time, I felt that we could overcome anything (he was an amazing caretaker) and I believed that despite the broken road God was repairing this one too. Well, I would love to leave this with some inspiration that he is healed and we lived happily ever after but that is not the reality of the Chronic Beauty. It is a mosaic of broken pieces still waiting for the artist to put together. This is vulnerable to share but necessary because if it can inspire one person that someone else sees you, hears you and can "get you" then it is worth it!
A new beginning…That moment was a beautiful expression of his desire to serve, love and provide for me
This Blog will become the framework for my Fit Chick Cancer Thriver podcast and from there a series of lessons I am learning on this chronically beautiful broken road.
The moment we decide to change what our pain means to us, is the day we create lifelong transformation in our experience.