When gremlins attack.

Hello heartache, grief, loss, uncertainty, fear. You gremlins had a strong grip on my heart yesterday and today. So strong I’ve felt frozen and unable to move forward. I hate being in limbo. I grieve the permanent marks you’ve left on my life. I feel ungrateful for all the good that’s been given to me, the protection and provision I’ve received. I want normal back. I don’t like having to be separated and different.

A very good friend reminded me today that I can hold gratitude and grief at the same time. I don’t have to choose. Some days I may focus on one more than the other, but one does not make the other disappear. That reminder brought me some freedom and helped me to lay down my weapons and stop attacking myself.

So I sit alone, taking deep breaths in and out, in and out. I think about how fragile I can be in these moments and I vow to hold my hand open and gracefully allow myself time to grieve.

back from a blog sabbatical of sorts

Hello, I used to post in here regularly.  Then I took an unplanned blogging sabbatical.  I got angry at my bladder and at my circumstances. Angry that I am still on crutches and frustrated with how much it hurts to practice walking with a cane.  I had a serious episode of major depression.  I tried not to completely isolate myself; I tried to be real and stay vulnerable with a few of my safest friends, but I did shut down for a lot of others, including this blog.  I had nothing good to say.

I think the pivotal point of my downward spiral happened about three weeks ago, when I had to step down from social work and transition into an auditing position within my agency.  I felt like an injustice had been committed.  I know in my heart of hearts that if I hadn’t had chondrosarcoma or intensive surgery, if I didn’t have mobility issues, I’d still be actively working toward my career goal of licensure.  Not only that, but I would have been able to make a lateral move to a position that was more clinical in nature.  The little footprints cancer left on my life have kept me from this.

During this time, I read a memoir by Eve Ensler, called In the Body of the World, about her cancer survival.  As I read her thoughts throughout the beginning of her diagnosis and her surgery, I thought, “You too?”

Listen:

“Cancer threw me though the window of my disassociation into the center of my body’s crisis… my body was no longer an abstraction. There were men cutting into it and tubes coming out of it and bags and catheters draining it and needles bruising it and making it bleed. I was blood and poop and pee and pus. I was burning and nauseous and feverish and weak I was of the body, in the body, I was body. Body. Body. Body.”

“As I climb onto  the gurney, I understand why you don’t walk into the operating room. Your bare legs just wouldn’t take you there. There is no one going with me on this trip.  This one’s my own.”

“The last thing I wanted to be was a patient. I didn’t like sick people. First of all, they were sick. Sick was not well, not able, not working, not making things better. Sick was surrendering, caving in. Sick was wasting time, not adding up. Sick was alone and stuck as the rest of the world moved by… There is obviously something scaring me even more than the cancer. It is the idea of being still.”

“Stage IVB cancer survivor, rape survivor. But I am not data and I don’t want to be dismissed and judged by categories or grades. Tell someone you were raped and they move away. Tell someone you lost your money and they stop calling. Tell someone you have become homeless and you become invisible. Tell someone you’ve got cancer and they are terrified. They don’t call. They don’t know what to say. What if our understanding of ourselves were based not on static labels or stages but on our actions and our ability and our willingness to transform ourselves? What if we embraced the messy, evolving, surprising, out-of–control happening that is life and reckoned with its proximity and relationship to death? What if, instead of being afraid of even talking about death, we saw our lives in some ways as preparation for it? What if we were taught to ponder it and reflect on it and talk about it and enter it and rehearse it and try it on?

“What if our lives were precious only up to a point? What if we held them loosely and understood that there were no guarantees? So that when you got sick you weren’t a stage but in process? And cancer, just like having your heart broken, or getting a new job, or going to school, were a teacher? What if, rather than being cast out and defined by some terminal category, you were identified as someone in the middle of a transformation that could deepen your soul, open your heart, and all the while you would be supported by and be a part of a community? And what if each of these things were what we were waiting for, moments of opening, of the deepening and the awakening of everyone around us? What if this were the point of our being here rather than acquiring and competing and consuming and writing each other off?”

Thank you Eve Ensler, for speaking my heart.

What am I doing to face depression head on? Counseling. Taking an anti-depressant. Getting back into physical therapy after a month of not having it. Having a small surgical procedure done later in September to see if it’ll help at all with my bladder abnormalities.  If it doesn’t, I’ll look on to the next steps that will need to be taken.

the best things are yet to come.

bad things turn out goodEvery day I’m feeling a little bit more “me.” I’m settling back into the groove at work and I am gravitating back towards goals and personal interests. I took my Clinical ASWB exam yesterday and passed! In laymen’s terms, that is the licensure exam for clinical social work. I still have at least a year left of clinical supervision and supervised hours, but I don’t have to worry about the taking the exam again. Seeing that word “Pass” on the computer screen when I finished made me feel so much satisfaction and excitement. It was like God pressed the “Go” button and said, “Jodi, your life is no longer ‘on hold.'” It was a confirmation that life doesn’t have to be solely about recovery. I can balance and continue forward in other pursuits.

Now for the judgey-judgmental side of me. I’m sharing some annoying things that have been said to me lately:

– I proudly walk into my office at the beginning of the morning and the charge nurse ends his shift a few minutes later. He says, “I saw you gimping in, how much longer do you have to be on crutches?” Maybe I’m being overly sensitive, but the word “gimping” annoyed me. When I think about how far I’ve come, from being immobile in bed, needing help with EVERYTHING, to being able to walk at a brisk pace on crutches, I think success! The crutches are not a hindrance. Right now, they are simply necessary to getting around.

– A lady at a social gathering asks me how I hurt my ankle. I said, “Actually I had a form of bone cancer and they removed a large part of the left side of my pelvic bone.” She responded with, “Oh, Is that permanent?” “Yes.” The only other thing I have to say about that one is that I was so proud of myself for keeping a straight face and not saying something sarcastic.

The thing about getting annoyed with people or chuckling at dense statements is that you cannot truly categorize people. We surprise ourselves and each other all the time. I find myself sitting at the same social event an hour later, blown away by something that same person said. It is a reminder of human dignity and value. All people have something to contribute to the picture, even the most marginalized person. No one is “too small” or “too daft.”

“Can we only speak when we are fully living what we are saying? If all our words had to cover all our actions, we would be doomed to permanent silence! Sometimes we are called to proclaim God’s love even when we are not yet fully able to live it. Does that mean we are hypocrites? Only when our own words no longer call us to conversion. Nobody completely lives up to his or her own ideals and visions. But by proclaiming our ideals and visions with great conviction and great humility, we may gradually grow into the truth we speak. As long as we know that our lives always will speak louder than our words, we can trust that our words will remain humble.” — Henri Nouwen

Pain all for the sake of proving what?

2:45am. Is this the third or fourth night in a row I’m struggling with sleep? Tonight is the worst. I overdid it today trying to accomplish a few housecleaning tasks on a single crutch. The breaking point came when I was ready to carry my large garbage bag from the kitchen to my outside bin. My head said,”Stop right there.” It was clear that I was barely making it walking with the one crutch. I kept going anyway. I took the trash out and then I said “screw you” to my exhaustion by turning around and checking my mail before going inside and collapsing.

Suddenly here I am, the throbbing in my hip socket became piercing pain and the slightest movement is causing me to yelp in pain. I’m at an eight or even a nine on the pain scale. The last time I screeched involuntarily in pain was while I was in rehab in Gainesville. I just now took a pain pill and grabbed my ice pack. I’m hoping the ice pack will bring some reprieve about for tomorrow, when I have to face PT. Ain’t nobody got time for this.

Where is the balance between me pushing myself to practice and adjust to walking with more weight on my leg and me taking care with my body and giving it more time to heal? My orthopedic oncologist said there is enough scarred tissue around what remains of my acetabulum that it is secure and unlikely my femur would pop out of place. I don’t have any more movement restrictions and if I fall, he days it will not undo the work that was done in the surgery. That sounds fairly healed to me! So will the pain get better over time?

That’s it, I suppose. I’m going to try not to fall asleep with this ice pack on my hip. I can’t feel it at all. My body is so odd.