I am engulfed in a muddy river of sorrow and loss. The current is strong, and I struggle to stay afloat. I fight and kick, but the debris of pain pulls me under. I surface just long enough to inhale and note my surroundings, only to be sucked down again…again…and again. The waters are raging.
There is no one to save me. No life jackets or ropes. I must do this alone, and I am so, so tired.
I’ve spent the last week fighting an invisible battle, rescuing myself. Most of the time it feels like drowning, like my body is suffocating. I can’t get enough air.
This is opioid withdrawal. For more than two years, I’ve worn a prescription pain patch every day, and since it gave me back a little life, I love this patch. I could leave my house, do the grocery shopping, and have full conversations. This miraculous little transdermal patch is a strong prescription pain medicine that contains the opioid narcotic buprenorphine, which is used to manage pain severe enough to require daily, around-the-clock, long-term treatment with an opioid. In other words, it’s the last ditch effort to regulate pain and have somewhat of a life.
In addition to this constant dosing of pain meds through the patch, I also have “break thru” medication on an as needed basis. I exhaust every other option first, from detox baths to heating pads, before taking a pain pill, but at least weekly I absolutely can’t continue, can’t be functional without it. Even with all that, about once a month I would be forced to go to the ER for stronger pain management.
Thanks to the media attention of the current “opioid crisis” and the fact that I live in the most addicted state, literally, most ER trips made me feel shamed, embarrassed, and even guilty. I’ve been secretly drug tested and treated like homeless drug addict. They don’t see the professional working woman I was before. When asked about my employment, I confess that I am disabled, a word that feels dirty. Tainted. My scarlet A. The look I generally receive says “you sure don’t look disabled.”
Most days I don’t. But every single day I am.
I was an average 36-year-old mother of four, teaching high school English and worrying about things like not forgetting my son’s soccer cleats, catching up on the mountain of laundry, and figuring out when I’d have time to grade those essays. Then the next day I was in the cardiac unit and at the beginning of the fight of my life. I’ve been bed-ridden, unable to read or write, had seizures no one could explain. The list of odd symptoms seems never-ending. The pain, at times, has been more intense than the birth of my first child who entered this world (without an epidural) weighing almost 10 lbs . I had to learn to let go of the reigns and rely on others to taxi my children to their various activities while I concentrated solely on healing. I missed whole seasons of my children’s lives, and all because of one tiny tick bite.
On the day I married my best friend, I was infected with Lyme disease and other co-infections. The bite and bulls-eye rash were quite visible on the back on my arm, but in the busyness, no one caught it. Even after positive testing confirming Lyme disease, when and where I was bitten was purely speculation. It wasn’t until our one year anniversary as we reminisced while looking at our wedding day photos that we discovered the rash,
It wasn’t supposed to be like this. Before our wedding, we had dreams. John and I could talk for hours about constructing a bunkhouse for our grandchildren, taking my daughters on a trip across the country, building a stunning outdoor fireplace and patio. “Someday” was our favorite topic of conversation. We were full of hope and love and our future. Back then I bought John handmade primitive rocking chairs for Valentine’s Day, a symbol of our promise to grow old together, sitting on the porch just rocking and talking.
I never expected to wake up one day very sick and another day … old.
This journey has taken its toll, and in the last two years, more lines and gray hairs are visible on both of us. Me from continual pain and the never-knowing of what tomorrow will bring. Him from worrying about his wife, the next relapse, the financial cost of just staying afloat, of maintaining everything around the house when I physically can’t, including the loving of our daughters. The white hairs on his chin, the beautiful creases outlining those kind blue eyes, even his gait has changed. He became on old man overnight, and that’s indirectly my fault.
I’ve even aged my children, who talk of death without a teardrop. Two days ago my seven-year-old asked where she’ll be when I die, explaining that she just wants to know where she would go school because she doesn’t like surprises. I told her the contents of my living will and reassured her that I am sticking around to see her grow up.
Then just yesterday, as we lay snuggled up watching a movie, she asked, “Who will snuggle me when you die, momma?”
Sometimes that child knocks the wind out of me.
First-graders shouldn’t have these fears. Mommas should be with their babies, but if I’ve learned anything in the last few years it’s that the problem with life is our expectations are incongruent with our reality. This isn’t the world I’d envisioned. This place, where moms on their way home from work are killed by drunk drivers; where a beautiful voice for Jesus had her story cut short, silenced by cancer; where a young mom wakes to her husband’s lifeless body, a brain aneurism leaving her to raise their young children alone; this world I live in is not what I’d pictured.
When I got sick, life quickly became about logistics and survival, doctor appointments and prescriptions. Those late night talks became fewer and fewer. And somewhere along the way, we stopped dreaming. Our someday became centered entirely around my healing….someday. The dreams we’d had on our wedding day had slipped away, faded into the background of our new lives.
The realization of this loss slammed into me this week. I sat on my stairs, between the first and second floor, and sobbed and prayed. I couldn’t go to John, to add to his worry. I couldn’t let my girls see me in tears. I needed to at least appear brave. So I sat in the in-between, snot gushing and tears flowing, and I mourned for all our lost dreams.
It wasn’t supposed to be like this, and try as I might, I can’t stop feeling guilty. For being bitten. For not getting well. For having some weakness in my body that won’t allow me to kick this. For the money thrown away trying to heal me. For the scrambling we do every month to pay our bills. For the worry and the stress. For little girls who fear this will be the day their momma dies.
So in the in-between, I begged and pleaded to live to see Izzi’s 18th birthday, no matter how much pain that requires. In the in-between, I let go and gave all my heartaches and broken dreams to God. I asked Him to give me new dreams and goals that will fit inside the parameters of this new life.
Opioid withdrawal is mean, my friends, but Lyme disease makes it look like a floor burn in comparison. Each day I wake back in the circle of hell and think it’s no wonder there are so many addicts who cannot get off these drugs. Withdrawal is torture. But I desperately want to be medication free. I’m having incredible success with a new treatment (I’ll be writing about this very soon!) and I want to see who I am without the pain patch. I need to know how much Lyme pain remains without the masking of opioids.
But today, without the patch, I want to crawl out of my skin. I shake and sweat and freeze and dream terrifying, vivid dreams. My brain plays tricks on me, mean-spirited tricks. I feel alone and stupid and lost. I hear, “You’ll never get past this” and “you aren’t strong enough to do this.” I fear I’ll relapse, require the meds again, and all of this will have been a waste. I am afraid, and my brain is not my friend.
For two days, I couldn’t stop crying, a normal symptom in the early withdrawal process. Tears fell even in my sleep. We reminded the girls that crying is not weakness. Actually, when momma is crying, that’s when she’s fighting her hardest. Tears mean bravery in this house.
No one outside of this house really gets it. There are few text messages from friends anymore. They’ve moved on, busy with their own lives, and I’m a terrible, unreliable friend. My family doesn’t want to hear an ugly report; they want only the positive, that I’m getting better. No one is going to hold my hand except my children and husband. The rest of the world is very much over me being sick.
I can’t blame them. I’m just the friend with this weird disease they don’t understand. A girl whose dreams are smaller and quieter now.
I get it. I really do.
I’m over me being sick, too.
However, I can’t just turn my back and move on. Giving up isn’t an option, and I’m determined to make it back to the dreamy world we took for granted years ago; this time with more wisdom, perspective, and grace.
Keep coloring, my friends!
P.S. To my dearest John, gray hairs, new lines, and all, I adore you. I love you even more than I did on our wedding day. I know I’ve really tested that “in sickness and in health” vow. Please know that though you have the ability to eat whatever you want and the ability to fall asleep instantly, I am still completely smitten.