God in my Messy Life

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Cathedral Sts. Peter and Paul, Phila.

 

I had an amazing day today. Honestly, it wasn’t all that special, I had a morning meeting with a financial advisor, came home in the rain, went to the bakery to get pizza and cake, Wawa to get coffee and mac and cheese, and the religious goods store to look into buying an audio bible.

 

No big deal, right? People run far more errands in the space of a day than I did today. But, I ran them alone. I spent a fortune in Uber fees, but I did it all on my own. This was the first time since I lost my left-side vision last May and had the two migraines that caused me to be unable to see for hours last fall that I’ve been out and about alone for such an extended time.

 

When I woke up this morning with a headache and a lot of anxiety. I really, really, really wanted to cancel my appointment in the city, but I’d promised to meet a friend before my appointment to give her a Wilt Chamberlain bobblehead I had laying around the house and I didn’t want to disappoint her. I honestly contemplated getting in the Uber, riding to the city, handing her the bobblehead, then going home rather than going to my appointment, but I thought an $85 ride with nothing accomplished was wasteful and stupid. So, I took a Tylenol and half a Xanax, put my big girl pants (aka my wig) on and started my day.

 

I rehomed Wilt, met with the financial planner, made some plans to keep me afloat now that I’ve been denied disability, and planned to walk to the Apple store afterward, but the rain and my lack of an umbrella (always listen to your big brother when he tells you to take an umbrella with you) prevented me from checking out the iPads. I’ve been wondering if I buy the 12” x 9” iPad if it will allow me to read better than the smaller screen of my Kindle. I’d like to be able to read rather than just listen to audiobooks. But, it was weather, not fear that kept me from walking the two blocks to the Apple store. So, I’m counting this as a win, an incomplete win, but a win nonetheless.

 

The rain stopped shortly after I returned home and there were things I really wanted to do today, but when you don’t drive you’re limited as to what you can do, especially when public transportation in your area isn’t all that good. I was restless and annoyed that I couldn’t go look for an audio bible and the Tiny Saints rosary I’m now on a mission to find, I also wanted to buy some pizza and go to Wawa for coffee.  I thought to myself, you took Tylenol and Xanax earlier, you don’t feel migrainy, and damnit you’ve been cooped up and hiding in this damn house for far too long. I ordered an Uber and off I went.

 

It was a successful outing, I bought myself pizza and cake at Liscio’s, coffee and mac and cheese at Wawa, and left my number at the Little Flower religious goods store so they can call me next week about buying an audio bible. I was looking for a daily missal, but they’d just sold their last one so technically I struck out at the religious store, but the victory was not in the items procured, it was in being able to be out and about alone. I admit it, I was nervous and uncomfortable, but I did it. Today I took my first really expensive steps in conquering my fear of being alone.  I attribute this to the journey the 101 Tasks in 1,001 Days set me on earlier this week. On Monday night I took part in the workshop sponsored by Lacuna Loft and started listing my 101 tasks. I’m nowhere near completing my list, but one of those tasks was to learn to pray more purposefully. Yesterday, on the Ibelieve.com website I read advice for praying intentionally, one point mentioned saying, God please turn up in my messy life today. I thought this was simple and to the point and so I chose this point to work on. I started saying it yesterday and I said it to myself today. I’ve been so angry at God, and so lost and my faith has foundered in the days and months since Chuck got sick and died. It really is hard to keep the faith when your world is falling apart. I’m working on it, I’ve gone back to saying the rosary every day and am working on figuring out how to pray more intentionally and trying to figure out how to reconcile my anger and confusion while somehow finding my faith again.

 

Today’s bravery was brought to you by God, my own strength, 101 Tasks in 1,001 Days, Tylenol, half a Xanx, a promise I didn’t want to break to a friend, and Uber. Bravery isn’t the absence of fear, it’s making your way through in spite of fear. Today was a much-needed victory and I am grateful.

 

 

Cry for a While then Choose to Smile Beautifully

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The third prompt during last night’s Lacuna Loft Unspoken Ink writing group was cry for a while then choose to smile beautifully.  I’m not at all certain that the changes these last two years have brought were the result of choices nor do I believe they are in any way serendipitous. Maybe God brought me to this point, maybe they are the result of a natural progression. I don’t really know the whys and wherefores and perhaps it’s better that way.

 

It was truly the worst of times, it was the best of times or is it the other way around? It was the best of times, it was the worst of times.  What was Dickens getting at?

 

You take the good, you take the bad, and there you have the facts of life.  Where was the ‘80s sitcom going with its theme song? Where am I going with this piece? My life? Myself?

 

Chuck is dead, my cancer has either come back or my brain is being eaten by the radiation that (hopefully) decimated Larry. And yet, I’m living a life I didn’t know was possible or available to me. Through therapy and art, I’ve grown. I’ve learned my own self-worth. I’m likeable. I’ve learned that I am worth people’s time and that people do want to spend time with me and are not just tolerating me.

 

In the year and some odd months since I melted down in the hospital about my Kindle not charging. I’ve learned so much about myself and my hang ups and I continue to learn who and what I am. I’m more self-assured, I’m making and have made new friends. I am growing as a person. I am so happy and grateful for this new internal life that I didn’t understand I was worthy of or really even knew existed. I have found my inner feet, and they are strong and sturdy and beautiful and brave and likeable. I don’t hate myself anymore. I don’t feel I am less than and deserve less than everyone else. I’m lighter. I’m not weighed down with insecurity and self-loathing.

 

But, how can I be better when Chuck is gone? I’m more alone than I have ever been in my life. I went from my parents’ home to my husband’s home. I’ve never been on my own before. The house still feels empty and silent when I sneeze and there’s no one there to say, God Bless You. I still have days when my greatest accomplishment is getting out of bed and staying out. Where was this better, brighter me when Chuck was still alive? Where was this person while I was healthy and young? How did the worst days of my life bring about a better, stronger me? Did the worst of times forge this new inner life because there was nothing left to do but live? Did my battered and damaged brain send me the message, survival is insufficient? Did God?

 

Why did Chuck have to get sick? Why did my cancer have to come back right when I thought there would be smooth sailing ahead? Why did Chuck have to die? Did all these horrible, terrible, scary things have to happen to afford me this better inner life? Is sorrow the price of a beautiful smile?

 

Maybe the bravest, boldest, and brightest among us have nothing left to lose?

 

 

 

Creating Art Heals

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Lately, I’ve been thinking a lot about how important art and creativity have been to my recovery. I honestly believe I am physically and mentally healthier because of the creative endeavors I am privileged to be a part of.

 

Last summer I walked across the street to the cancer center and joined a cancer survivors art discovery workshop. I only got to go once before Chuck was too sick for me to leave him home alone. But, then in October I was blessed with an invitation to join an online creative workshop my friend was leading for Lacuna Loft, an online cancer support project for cancer survivors and caregivers ages 18-39. I’m actually older than 39 so, shhhhh….. don’t tell. Actually, I think they’ve extended the age to 45 so, I’m good for now. No, I won’t tell you how old I am, a lady never tells her age. I’m both a cancer survivor and a caregiver, though Chuck really didn’t live long enough for me to be a caregiver for very long.

 

In the last two years my husband battled a very aggressive form of kidney cancer, my cancer returned and took some of my eyesight with it, Chuck died, and I am yet again facing the possibility of my cancer being back or the radiation that cured it damaging my brain. I believe I could not get through these days without the art and writing programs I participate in. It took a while after Chuck passed away for me to get back to participating in Lacuna Loft’s creative art workshops, Let’s Make Stuff and even longer to make it back to the cancer survivors art discovery workshop at the cancer center across the street. When I finally did get back to creating art and being part of groups creating art, life started getting better, I started getting better.

 

I’ve been seeing a therapist since last June. I highly recommend seeing a therapist as a form of selfcare, but I also highly recommend art, and writing, and journaling as means of selfcare. The ninety minutes I spend each week at the cancer survivor’s art discovery workshop are some of the very best of my week and the two hours I periodically spend taking part in the Lacuna Loft Lets Make Stuff creative art workshops allow me to reach out of myself and beyond the grief and loneliness and fear. I’m an incredible multitasker, and by multitasker, I mean I’m fabulous at worrying while I clean the house, pay the bills, cook dinner, etc., etc., etc. You get the picture. But the time I spend painting, or drawing, or working with clay, or writing I am out of my own head. I am focused on one thing and one thing only, creating. I am in the moment. The “What if” monsters are silenced, the voices in my head are quiet, I am quiet and still on the inside. The act of creating somehow puts to sleep the anxious, loud, worrisome parts of my brain while I make art or write. I once told my therapist that I need to be at a full stop at some point or I’m going to go crazy. While I make art or write I am at a full stop; I can breathe, I can be still, I can be at peace. Art heals. And, it’s not just the art, for me it’s the community of being with other survivors for a while.

 

You can, like me, have the absolute very best support system of family, friends, and extended family who’ve adopted you as one of their own, but sometimes you just need to be with those who’ve been down the roads you’ve traveled and seen what you’ve seen and experienced what you’ve experienced. You don’t even have to talk about what you’ve survived or are currently surviving, it’s just comforting to be with what I can only describe as a tribe. Time spent with fellow warriors is also healing. It’s not necessary to be part of a group to reap the benefits and healing that comes from creating art. The doodling, and craft projects, and blogs I write at home are equally calming and quieting. For me, the groups and community are a nice added bonus.

 

I’m visually impaired so, sometimes I cannot keep up with the others, but I make the best of it and both the beautiful people at Lacuna Loft and the amazing women in my art discovery workshop are kind, and gracious, and helpful. I don’t have to be perfect or capable to create art and be part of a community, I just have to be there. Hell, I don’t even have to be good, as you’ll see in my shared “artwork.” Oh yes, I use that term as loosely as it has ever been used. Trust me on that. You’ll see. But in art, and creativity, and selfcare perfect doesn’t matter; doing, and being, and creating matter.

 

Through therapy and taking part in artistic endeavors I’ve stopped being afraid to try something I’m certain I won’t be good at. And, you know what? Sometimes I am actually better than I ever imagined I could be at something new, and that feels pretty darn good.

 

Art isn’t just markers and crayons and glitter and paper, art is also words, and feelings, and expression. I was always sad that I couldn’t make it to the cancer survivors writing workshops at the Hospital of the University of Pennsylvania because I don’t drive and more than eighty dollars to go back and forth in an Uber to a free writing workshop seemed a bit excessive to me. So, I was thrilled when Lacuna Loft posted the signup link for their summer session of Unspoken Ink, an online creative writing workshop. As I’ve said over and over and over again, writing saved my life, writing gave me something to be accountable to during my first cancer journey. That I did not write about Chuck’s cancer and my second go around with the big C and my quest to kick Larry (my tumor) out of my head lessened my wellbeing and my understanding of what was going on around me and what was happening to me. I never took the time to explain things to myself. I never took the time to be accountable to how I was feeling or where I was at in the process. I was just going through the motions, putting each fire out as I came upon it. I didn’t have a deeper understanding of what was going on; possibly because I didn’t want to understand deeply enough to feel the feelings that came along with truly knowing and understanding that nothing was stopping Chuck’s cancer; it was an unstoppable force of destruction. I didn’t want to really understand that not only had my cancer come back and robbed me of a triumphant five years cancer-free party and return to normal life but also my vision, and that there was never going to be a “normal” again. I think it was too terrifying to deeply understand that my husband was dying and I was disabled. But, unconsciously burying those emotions, denying my reality, not sitting down at the end of each day, processing and explaining to myself the events of each day robbed me of stability and sanity, I just didn’t know it until the great Kindle meltdown while I was in the hospital recovering from brain surgery last May.

 

Therapy, and the act of making art, and writing, and taking time for selfcare have allowed me to start processing my emotions again and to explain to myself where I am in this process. Since joining the Unspoken Ink group, I’ve written a few pieces that have helped me write about my grief and my search for faith in all this sickness and loss. In the spring I wrote about the small everyday things that are much bigger than we give them credit for, sometimes getting out of bed is the biggest achievement of the day.  You can read it on Lacuna Loft’s Young Voices blog.

 

The next few blogs are going to be versions of pieces I wrote in the Unspoken Ink group. Some will be the exact words that flowed during the group and others will be cleaned up, edited, and added to versions of pieces I wrote during the group.

 

Art heals…   Art saves…     Art gives voice to emotion and feeling…     Art is life…

 

 

 

 

Some of the “artwork” I’ve created

 

 

I’m a Real Girl Now

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This piece is from tonight’s Lacuna Loft Unspoken Ink writing workshop. It’s based on one of the prompts, which basically said we decide when our birthdays are, when we feel we are another year older, better, wiser.

 

I’m a Real Girl Now

 

 

Am I a better, wiser person today? Do I deserve a birthday celebration?  Am I a better person for having survived cancer twice and lost my husband?

 

My battles have been, and are, long and hard fought. So, do I get to move up to the next age? I’ve shown up every day with a positive attitude, worked daily to get out of bed, gone about life as a semi-reasonable adult, been social, been grateful, been strong.

 

So, do my strength and determination buy me another year?

 

What wisdom? What meaning have I found in the suffering, and sorrow, and loss? (not much)

 

Am I a better person because I’ve managed to survive and cope for the last eight years?

 

I’ve worked on the scary tasks of learning to live rather than just survive and to feel and experience my own emotions.

 

I’m a real girl now; a mix of The Velveteen Rabbit, The Little Mermaid, and Pinocchio. Is being real the same thing as being wise? Does this mean I’m worthy of another birthday celebration?

 

 

It’s Been a Year

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I have to admit, I never thought I’d be back here updating the cancer diaries, but here I am writing to you in the middle of the night, two weeks after my last oncologist appointment; an appointment where I learned a year after my last surgery there is a small amount of the growth. Growth that might be radiation necrosis or tumor growth.

 

A year ago tonight, I was in the PACU unit of the hospital recovering from brain surgery to remove the cancer that stole my eyesight. How could it be I’ve come this far and lost so much in the process only for it to be possible I might be back at the start again? This time as a widow. Why is the universe so cruel? I’m terrified. There’s only so far bravery and tenacity can take you. I can hang in there with the best of them and have for the last eight years, but how many rounds does the universe expect me to fight through? I want my second act damn it. I want to be free from cancer and from fear. I want a life, a full one that does not include MRIs every three months and oncologist appointments and pills three times a day to keep the radiation treatments from eating my brain.