We took a vow in summertime/ Now we find ourselves in late December
I believe that New Year’s Eve/ Will be the perfect time for their great surrender
But they don’t remember
Anger wants a voice, voices wanna sing
Singers harmonize ’til they can’t hear anything
I thought that I was free from all that questionin’But every time a problem ends, another one begins
And the stone walls of Harmony Hall bear witness
Anybody with a worried mind could never forgive the sight
Of wicked snakes inside a place you thought was dignified
I don’t wanna live like this, but I don’t wanna dieVampire Weekend, “Harmony Hall”
There is light but there’s a tunnel to crawl through
There is love but misery loves you
We’ve still got hope so I think we’ll be fine
In these disastrous times, disastrous timesFrightened Rabbit, “The Oil Slick”
The last few weeks have taught me another phase of this journey. The eternal stall for maintenance. I made it to the top of the hill and got my surgery. And now? I am stuck at the bottom waiting for the repairman to come out and get the engine running again. Somebody came along and shut my internal locus off indeterminately and I am stalled again. Waiting for energy. Waiting to feel better. Waiting to be productive and to do something about something again. It’s like an iron blanket draped over me that I just can’t seem to shake off. I can’t get momentum to push my body forward, or even keep my head clear. For a while there, I felt like an 80-year-old taking up residence in a recliner or on a sofa for hours and simply staring at whatever was in front of me. I was literally reduced to falling asleep in a chair while watching the goldfish tank.
Three-and-a-half weeks post-surgery, the incision pain and muscle pain are thankfully dulled. I am actually down to almost no pain medication at this point. I realized that taking pain medications on a largely empty stomach has been doing more harm than good; exacerbating my nausea, continuing the cycle of not wanting to eat. I need to eat to get my energy back, and I need to not feel sick so that I can eat. I am getting there. My abdominal organs appear to still be very angry and inflamed, learning how to heal and work again. I go to sleep in a recliner and often wake halfway through the night feeling sick and end up going up to take a 3-4 hour bath to settle my way through to morning, often falling asleep in the tub several times before morning.
I can tell that I’ve lost weight; something I expect my oncologist to not be thrilled about. If I want to get back to systemic chemo. So I’m grabbing each better moment as it comes. Feel better? Have a breakfast shake. Try walking. Try solid food. Step outside to breathe fresh air.
It be something as small as rolling down the car windows on the way to and from a medical appointment. Or listening to my kids talk about their days. Or kisses from my husband, enjoying his presence and smell. That musky smell that has been there since I was a spindly teenager holding on for dear life. As if he might disappear if I didn’t. This person who saw me. Who loved me for me instead of an idea of who I should be.
Bits of humanity, bits of me pop out again in each of these moments. These moments, so tiny; but right now all that I have. But the number of moments are increasing.
Last night, I woke several times, but was able to get back to sleep and make it through a night. This morning, I got up for a pre-scheduled hair appointment, had a seated shower and got dressed like a real person for the day. I still had my husband drive me out of caution, but it worked. I got out. And today I feel better. Today I feel more like a functioning person than I have for quite a while.
When the coaster stalled, it was going through a tunnel and I now sit perched, half-in and half-out. The heavy darkness is daunting, but I can see all of the lightness ahead and it is calling to me. It is dangerous to get too comfortable. I am even looking forward to getting back to systemic chemo. Just so that I can be back up on that horse. Just to feel like I am fighting again.
I have to push forward- even if just an inch- every day. Into more and more moments. And those will build on each other until I am back again. Current wish list items include: a walk in nature, slowly enjoying something delightfully sweet and fruity, getting dressed and going out to dinner, and sleeping a full night with ease. These will help me get to the bolder goals- enjoying a day trip with my family, feeling grains of sand and water on my feet, riding a theme park ride and feeling the air on my face.
I’m missing moments of forgetfulness. Moments that flirt with a feeling that used to come periodically, but now feel as rare as a diamond. It’s the feeling of being carefree.
I have hope that I can get back there again in fleeting moments of joy. The way is through is to grab these moments of momentum with everything I have, and move into the other side of the tunnel.
The North Sea of My Mind 