Monday, September 26, 2016

A New Life

I turned 40 a month ago. I honestly didn't think I'd live to see the day, but by the grace of God, I made it to the milestone birthday. And He had to pull off some fancy miracles to make it happen. I suppose that is why I was SO excited to celebrate this year. I can't remember most of the birthdays in my 30's. I spent several of them in the hospital. But for this one, I wanted to be with the people I love and to enjoy life in ways I haven't in a long time. I wanted to show God that I didn't take this gift for granted, the gift of feeling stronger and having less pain. I wanted to celebrate this amazing body, each and every part, and the way it all works together in unison. I wanted to let my happiness glow like birthday candles and infect those who have stood by me through the good and the bad.

It was a magical weekend, and I came away with a huge hang over of gratitude. Gratitude that what was is in the past. Gratitude for the profound progress I've made, physically and emotionally. Gratitude that the future, for the first time in a long, long time, looks hopeful. And gratitude most of all for the love that surrounds me, even when I'm at my weakest.  A girl doesn't get much luckier than that. I've vowed to myself to make every effort to show the Divine just how appreciative I am for every step forward, even the teeny, tiniest ones. The best way I can do that is to make every day count.

Little by little, things are getting better. I'm getting stronger.  My pain is still there, but I'm learning how to bargain with it. I give the pain a nap in exchange for having the strength to take the dogs on a walk. What's going on in my body is much like an open-air market where my organs and diseases are the vendors, setting the prices for the delicacies they have to give. Delicacies that most would take for granted, like the ability to get through my physical therapy without too much shortness of breath. I'm the eternal shopper, looking for ways to give my body what it needs in order to give me a piece of life. I'm less fuzzy, my thoughts and memories no longer completely clouded by medicine I no longer need. While I'd gladly give back the pain, I wouldn't trade the lessons it's taught me for the world.


For the first seven years of my health issues, I still managed to sneak in a bit of living. For the last decade, I've been the equivalent of a bubble girl. If not in the hospital, I've been in my room, usually heavily sedated from the pain that ravaged my abdomen. Friends have moved on as their lives have naturally evolved.  My career faded away as it became clear I wouldn't be returning to work anytime soon.

The World has changed while I've stood still, and I've been ignorant to the events and changes that affect us all. My mind has been too numb to absorb anything but the issues and changes before me, my eyes sheltered from anything that wasn't happening either in the hospital or my home. My brother recently took me on a ride around downtown Columbus, and I was shocked to see that Clipper Stadium had moved. I was even more shocked to hear from Keith that it had moved over ten years ago. I'm thawing like a spring frost.

Healing is a journey, not a finish line. I'm not delusional enough to see my 40th as the end of my health issues. Some of them are ongoing and require routine check-ups. But it's the first time in a long time that my body has made a slow, but steady recovery. Where my pain used to be a daily 8 out of 10, it is now on average a 4 or 5 out of 10. For some, a 5 may still sound horrible, but to me, 5 is a miracle. It's like a rare comet I never thought I'd see. My physical therapy has strengthened muscles that had atrophied after being cut and weakened by surgery after surgery. I recently got a copy of my medical record. Between 2006 and 2016, I had over 40 surgeries. Three of them resulted in a stay in the SICU on a ventilator. All of them were scary, and every one brought me closer to God.

There's a peace that has come with knowing my decade of hell is over. I know from experience that there's no guarantee that my health issues won't surface again or worsen, but in an effort to attract positive things to my life, I chose to believe that better times are on the horizon. My soul feels more peaceful. There aren't dark clouds hovering over me every moment of the day. That's not to say it's sunny skies 24/7, but when a storm does blow through, I plan to embrace it as a temporary development, and to believe that whatever happens, it is part of my journey. There is a reason.

Living with a disability and multiple health issues doesn't mean that you can no longer have dreams and aspirations. In many instances, it just means you have to redefine them, come up with new ones that fill you with just as much excitement and passion as the ones that couldn't survive the storms.  My thirties were like a war I survived by the skin of my teeth. As I look ahead, I see another chance at life. A chance to make my redefined dreams come true. A chance to give back to those who are hurting and suffering as I once did (and sometimes still do.)

I'm proud of my survival. I'm rather in awe of it, in fact. Wherever I go from here, I will carry the strength from all my battles with me.  After the seventeen years of cutting and radiation and pharmaceutical dumping, it's going to take my personal ecosystem awhile to reset itself. Even then, it won't be normal, but it will be MY normal, MY life.  I'm in love with the idea of a new start, and that's what turning forty symbolizes to me. It's a chance to leave my footprints on a new beach and to celebrate this time I never thought I'd have. Life is SO good!



Sunday, May 8, 2016

For My Person on Mother's Day

I grasp for words to honor my mom on this Mother's Day. Perhaps only my love and respect for her could chase me out of the recent deep freeze of writer's block. This year seems especially meaningful, as recent events have immersed my mom into the depths of what she defines; nurturing and strength, empathy and selflessness, and foremost her unconditional love, She lights my world even in the darkness of my pain. Our connection strengthens me even when my body fights me from within, cutting me down through the many surgeries, symptoms and procedures.

It's been a very rocky few months with my health, and I've withdrawn from social media. I've been blessed with messages from friends checking in, been on the receiving end of so many prayers and kind thoughts. My mom has done her best to keep friends posted. I've been battling some of the most intense pain I've ever experienced. Many times, the one thing that has gotten me through the day was looking forward to my mom coming home after work. She works so hard, and then comes home and has to watch her daughter suffer. It hurts my heart to see the pain in her eyes, knowing she would take my pain away and combat it herself if she could. 

No matter how much I've cried or complained, she's never turned her back on me. Her love has been the blood in my veins. She lights my world with her endless faith, and her hopefulness has no end. She has been the life force in my world. Not to discredit anyone else's support or love during this time, but Mom, YOU have kept me going even when I felt I could not take another step.

Thank you! Thank you for helping me be brave! Thank you for showing me gentle care even when I'm unlovable in my momentary miseries.  On top of all my struggles, my heart is always heavy on Mother's Day thinking of my son, whose absence is like a hole in my spirit. Thank you for helping me go on even in my sadness, for reminding me I am a mommy to my precious angel child. Mom, your positive attitude parallels Nana's, your spirituality a reflection of hers. I look at you and see the same inner peace she exuded, and I often see the same twinkle in your eye.You remind me of her daily, and it helps fill the void of her absence. Our three-generation connection goes on.
 
While I never dreamt of still living with my mom at my age, I honestly could not imagine a better roommate. Between you and I and Zoe and Bella (the dogs), we resemble a bizarre version of "The Golden Girls". If we were to be monitored in our home, we'd likely both be committed for our antics, but even an asylum would be tolerable if I had you by my side. Somehow you help me find the humor in even my hardest moments. Laughter and love are the best medicine, and you surround me with them daily. Thank you for keeping my spirits up even as my body hurts!
 
I'm feeling lighter, happier times ahead. There are new adventures on the horizon! You are my soul sister and my best friend. Somehow, after all these years, you still manage to make me feel wrapped in your arms, up against your heart like in the picture below. My gratitude for you is topped only by my gratitude to God for gifting me this life as your daughter. Thank you for being my person!

The water runs on....

Happy Mother's Day!
 

Sunday, February 14, 2016

So Many Firsts...

Valentine's Day brings up so many feelings and memories. As a single woman, it can be a somber day if I focus on the fact that I haven't found that one true love I always imagined I would've found by now. It's a perplexing search, but one I know God will guide me on in his divine timing. Instead today, I'm embracing all the love I have in my life and remembering the precious moments that it fills me with. Gratitude is not an adequate word for what I feel, so I'd rather leave some written breadcrumbs on what it all means to me.
 
There's nothing so pure and precious as the love for a child, and my brother and his wife have blessed me with two nephews that have been beacons of light over the past eight plus years. Ethan and Eli may someday read these words their YaYa has written and laugh at how much credit I give them for keeping me afloat as I've faced some pretty challenging years of health challenges. Only those who've witnessed it can know that these boys have given me more than a reason to fight when I may otherwise have given up, and there's nothing I wouldn't do for them. 
 
As my first nephew, I had no preview to the immense power of his presence, but looking down at Ethan not long after he was born, I felt a jolt of love that sparked me out of a darkness that I once thought would have no end. I could not love him enough; the love just flowed and flowed. And then our little Eli arrived. He was in his carrier on our dining room table when I first saw him. I remember walking up to this perfect little nugget of wonderment and feeling a shower of peace fall over me. Where Ethan has always had more of an electricity to him, Eli has had a serenity. They are well-balanced forces of nature that changed my life forever.
 
Then there are the memories of romantic love. My sophomore year of college at Miami, a friend (with a spark) invited me to a grab-a-date. That night was filled with magnetic looks and sweet verbal exchanges, charged touches and charming smiles. And by the end of the evening, there was a kiss that ended all other kisses for the next few years. On and off, he and I would date throughout college and beyond. So many first trips to new cities and first emotions. And to this day he remains one of my best friends. This day will always remind me of him.
 
We are all blessed, in different ways, with all kinds of love. Some more than others, and I recognize how much God has blessed me. I could write forever about my dear friends and family. My parents, whose love was the reason for me and for the best gift they ever gave me; my brother, Keith. No matter the directions our lives have taken, they have always come together to support me and nurture me when I could barely care for myself. I was never lacking in unconditional love. It's the glue that keeps me together.
 
Probably the true first is the love of a mother and child. My mom, who is my best friend, soul sister...beyond words.... has never stopped nurturing me. Our powerful connection became even more powerful when I was blessed to carry my son, Gabriel. I couldn't have imagined loving something so much. I felt like a goddess endowed with this miraculous being that was going to change life as I knew it. BEING a mother alongside my mother was perhaps the most enchanting time of my life, even if my mothering was only within me.

Love knew now boundaries. It's with love THAT powerful that allows us to feel true heartache. When I lost Gabriel in my sixth month of pregnancy, my heart was broken. And it just kept breaking, like a boulder thrown into a calm pond that rippled times infinity. While that ripple has never stopped, neither has the ripple of love. In fact, both were more like tidal waves. On days like today, it's the love that washes over me.

My heartache over Gabriel has only drawn me closer to my mom. Sitting next to her as I write this, I'm overwhelmed with the tremendous blessing that SHE is. We have a relationship that has no end. The relationship between a mother and child is never-ending and transcendent.  Just yesterday, I learned that one of my college roommates lost her mom, who was just 64. I didn't know Mrs. Ott well, but I DID know how close Gretchen was to her. They were best friends, just like my mom and I, and learning of her death has rattled me. My heart breaks for her loss, for the loss of her family, and I dedicate this blog post with love and prayers to their healing.
 
That's another first for me. It's my first friend to lose a parent, and it's made me realize how precious each moment is with everyone I love. We never know when that last hug is going to be. So whether you're single or married, take a moment to think of ALL the love in your life and marinate yourself in it. Valentine's Day isn't just about romance. It's about the divine emotion that God has blessed us all with the capacity to feel if we just open our hearts. May your heart be wide open today and everyday. And even in loss, may God's love nurture your hearts even when they're broken.

Monday, January 11, 2016

My Muse

I must say, the life of a woman with chronic pain certainly keeps things interesting.
 
Many who suffer with chronic pain have lost a great deal of the life they had prior to becoming ill.  It's daunting to watch the jobs and relationships you worked so hard to cultivate crumble as survival becomes true to its name. Staying alive becomes your sole purpose, and it is a desperate roller coaster ride of surgeries, procedures, diagnostics and appointments with specialists, all the while trying to do so with some modicum of pain management with a dash of grace. What once felt like a foundation for my future has since become sand crumbling through my fingers.
 
 
My health issues can certainly make me feel as if I'm being followed by an ominous, stormy cloud. I deal with depression, anxiety and incredible stress, but those are things many people can relate to. While my health has kept me from working, I am capable of writing. It's like breathing for my soul. It's the way I process my experiences and pass along pieces of thoughts that may just help someone else. My writing is my greatest joy, and the sense of accomplishment I feel just from knowing others are reading my blog is tremendous.
 
 
 While I love to write and publish my blog posts, it is sometimes difficult to hear how others perceive me. I’ve been told that my writing is dark, sad or even “hard to read”. Reality can be hard to take. I’ve never really responded to those “reviews”, but I guess I will say this. If you find peace from reading my words, whether it be that you physically, emotionally or spiritually feel connected, YOU were meant to read my post.
 
 
Using your life experiences as inspiration does not a dark person make, even if said experiences aren't all butterflies and rainbows. I would rather be "dark" and touch the souls of others going through similar issues than be light and fluffy and make a much less resounding effect on my audience. I may not speak for the majority, but I feel that by writing about the truthful depth and despair of this aspect of my life, that a decent majority of those in a similar situation will find comfort in my words.
 
 
 I want to FEEL life, and express my experiences, even if that means feeling and writing about pain. As this sentence entered my brain, I had to take a quick mental vote before typing these words. I would rather FEEL pain than live a numb existence.  That's just me. I'd love not to have to choose between those options, but we don’t always have a choice. And even if we did, sometimes these obstacles we face make us stretch ourselves in ways we never would have otherwise. We have the opportunity to become greater versions of ourselves by enduring hardships. My day to day pain is intense. It cuts into my nerves, clear into my soul. I spend a lot of time immobilized by it. And it’s during those moments of intense suffering that my mind sometimes wanders to the “what if”.
 
 
 “What if” I had no pain? THAT would be amazing! But “what if”, in order to go from having horrible pain, I would have to go to having no FEELING at all? I have joked with my physicians about how great it would be if they could just give me a permanent epidural between my esophagus and pelvis. I came out of one of those appointments and almost immediately saw a quadriplegic being pushed in a wheelchair. That person probably wishes everyday that he could feel something. It was a reminder of the lesson I am constantly trying to learn, which is to be grateful for everything I have; the good, the bad and the ugly. It’s my life, and I am grateful for every breath, every ache.
 
 
For whatever reason, I was meant to have this journey with my health. When people compliment my writing, it gives me this warm glow inside. I was discussing a recent incident with my therapist, and I told her that there's a reason my writing ability and health issues were paired together. I was meant to write about my experiences, to help others who are going through similar issues.  It's almost as if my pain is my muse. There's not an aspect of my life it hasn't touched, and it effects not just WHAT I do, but also HOW I do it. And I'm not alone. 25 million adults in the U.S. cope with pain on a daily basis.
 
 
Somehow my beast has been my beauty, after all.