The Book Of Distant Love

Just Another Day

I knew this day was coming long before it’s inevitable arrival. I didn’t want to acknowledge it in words, but that is how I’ve always gotten through the hard times. There is something healing in writing, in knowing that someone out in the world surely knows how you are feeling.

Today would have been our 3 year wedding anniversary. So much is able to change in a year’s time. A fairytale to just another day never meant to be celebrated again.

I’ve continued to struggle with my divorce. I feel terrifyingly stuck. I know things take time, but time has not been my friend. Right at the beginning of our marriage, I became so ill with Red Skin Syndrome. He was there since Day 1. And even though he is gone now, I am still forging on through Topical Steroid Withdrawal. It’s been two and a half years of this condition and as each day passes, it has shaken my resolve and pointed out every fragile spot in my emotional arsenal.

Although I am forever grateful for the lovely comments people give me or the well intended compliments people say about my skin, the fact is, no one is here with me 24/7 to see the exhaustion and pain that still very much perseveres during this time. They have become my constant companion. Shooting the documentary over this summer about my health condition may have enriched my life and given me purpose (and it’s something I would never take back doing), but it also took a heavy toll on my body. I haven’t felt this unwell in some time and it’s these moments, the times where I am bandaged up, skin burning, itching, and sore, that I wish he was here. I miss his arms, his comforting presence, and knowing I was loved despite what I looked like. No one made me feel prettier than he could. There is strength in having a partner, a fear that is not present when facing the world.

I’ve been told quite a few times this past month how tired I look. It’s been my unshakable  accessory. No matter the sleep I get or the healthy food I eat, I am immeasurably drained. I attempt to keep up with everyone else and put on a smile, which can help the spirit at times, but once behind closed doors, I just feel like collapsing. And, again, there aren’t those two arms, or those words of encouragement from the one person I want to hear them from most.

That is why I feel stuck. That as long as this condition persists, I will be in this purgatory of missing him and not being able to move on. My condition is not one to share with a new partner. It’s like having a newborn. I am not always in control of when I can do something. Plans get canceled. Events get missed. My skin dictates the most indefinite details of every day life.

But there is also the other side of the table where I wish there were things I could miss that I absolutely cannot. When it comes to bills, I do not have the freedom to take off a week to rest my ailing skin or my lowered immune system. It frightens me. I am sure it frightens many others who have this condition and need to support themselves. As I type this, I am not looking forward to having to wake up at 5:45am on school days to deal with burning skin that flakes as if I have not already endured this for 2.5 years of shedding hell. However, money would not be the only aspect I’d miss out on from school. I very much miss being part of a team. I miss making connections with people and sharing laughter and love. It brought me such happiness when I used to be a performer for Royal Caribbean because it gave me a chance to become part of other’s lives in a fun and meaningful way. I would plan trips; I would orchestrate holiday events; I would film and edit cast videos so we could all carry those memories with us forever. I miss all of that more than I could fathom expressing.

Today reminds me of all of this, of all I shared and have lost. I may be blessed with many things in my life that I never wish to take for granted, but for today, I just cannot erase the things I have lost. Until my skin is healed, I’m not sure my heart will be healed. He was such a large part of this journey for me and I could see the suffering he was going through because of my condition, the toll it was taking on our ability as a couple to be like we had once been. I get why partner’s stray. I am not making an excuse for it, but I get it. Just as much as they miss the life they had when we weren’t sick, we miss that life, too — to not be sick, to not feel like shit, to not have our skin instruct what we are and are not able to do.

I don’t wish to make any other man feel trapped in this condition, to sacrifice things for me. I won’t allow it. I just look forward to the day when all of this is behind me and I can feel at peace in someone else’s arms.

Thankfully, these past two weeks have been filled with an immeasurable amount of joy that is spilling over into today. I am holding on to it. Always hold on to those moments. They are what save you.

Love, B. R. Wren

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