This afternoon at 3:30, my family packed up the car and headed to Magazine St. to park the car and have a picnic while we waited for that night’s festivities to begin. This is our first Mardi Gras and. unfortunately, my husband has to work for much of Mardi Gras in the French Quarter, so this was really our only chance to spend Mardi Gras together as a family. It was one of those special days that create memories that you will always carry with you, sharing the story with your children’s children, and with anyone else that will lend you an ear to listen.
Cleo and I spread our blanket out, brought out books we were reading, and spend our time basking in the beautiful February New Orleans sun, watching as preparation for the festivies began. People walked passed us, wishing us a Happy Mardi Gras, and police officers made small talk as they were preparing to take their stations for the parade. We watched as people made their way up Magazine Street, returning to their homes from work or driving to meet up with friends to partake in the Mardi Gras celeration together. My husband wandered around Magazine Street, looking for a Daquari chain for me, with no such luck.
People next to us, a man named John, was up from Belle Chase with his two boys, Logan and Joshua. Cleo joined the two in a game of catch. He offered made small talk, shared his experiences of living in Southern Louisiana his whole life. Emily met another little girl and they played sidewalk games together, dancing around the cracks that are infamous in the New Orleans sidewalks and playing an impromptu game of hop scotch without the traditional number grid. The parade began and we watched in anticipation, Cleo holding up her sign declaring herself a novice minion of the Krewe D’ Etat, hoping to get something that lit up the night sky in alternating flashes of light.
As D’Etat reached their mid-parade point, we met a couple named Karen and Dave, who split their time between Colorado and Louisiana. Dave and Karen split their time between Louisiana and Colorado. We shared with them that it was our first Mardi Gras, told them about moving from Wisconsin to New Orleans, and talked about Cleo. Karen and Dave were so full of life, welcoming us into their Mardi Gras experience. Karen held up Cleo’s sign that declared it was her first Mardi Gras. As the floats passed by, we would make as much noise as possible and before you knew it, Cleo had learned the coordination needed to catch the beads. Dave gave Cleo some beads, telling her that if a boy gives you beads, you need to give him a kiss. Cleo got a kick out of that, and gave Dave a kiss on the cheek.
During our time at the parade with Karen and Dave, I forgot about how much pain I was in earlier in the day. I forgot about everything I was worried about just a few hours earlier. I forgot about what I was doing this time last year and just how difficult the year had been, one plagued with disturbing revelations, familial drama, and the lethal combination of worry and stress. Karen and Dave showed us what being a New Orleanian really is about. They laughed, they smiled, they enjoyed life. They didn’t just enjoy life, they really lived life. Their kindness, not only to Cleo, but to The Viking and I, was unbelievable. I felt so fortunate, so lucky, to have had this experience – an experience that came after dealing with rudeness and greediness – to instill in our whole family is that looking out for one another is what New Orleanians do, more so here than any other place, because the people here in New Orleans have learned what the important things are, and how to be grateful for the blessings they have, not angry about those things that they don’t.
The Viking works the rest of Mardi Gras. Today we are taking a much needed break away from the parades and festivites. Tomorrow we may meet up with Dave and Karen again. Whether we do or not, they really presented us with an amazing gift. Thank you, Dave and Karen, for showing us what carnival season really is about.
“What can I do to help?” my husband asks me, seeing exactly how much pain I am in when I attempt to walk from the couch that I have made my home to the bathroom, five feet away.
“Take me out back and put me out of my misery, ” I respond, thinking of how we took care of ailing livestock back on the farm in Wisconsin.
“There is nothing you can do, honey, just help me.”
Unfortunately, in my life, this exchange takes place quite frequently. Sometimes it takes place daily, sometimes weekly, but it is a constant in my life.
For me, it is apart of living with fibromyalgia.
Fibromyalgia is so much apart of my life that I have a nickname for her, Fibro, just like I call my husband Papa Bear or my daughter Pumkin or Peaches or Baby Girl. I don’t have the affection for Fibro like I do for my family, but the thing it has in common is that it is just as much apart of me as they are – it is always here, even when I wish it would go visit somewhere else.
Fibromyalgia affects different people differently. For me, when Fibro is at full flare up, I am essentially immobile. To walk from the couch that becomes my marked territory during these days to the bathroom, a whole ten feet, tears are in my eyes and I am crying because it hurts to even walk. This isn’t an exaggeration. Every step I take causes a shooting, burning, and electric pain to course up my legs from the time that my foot lands on the floor to take a step until I attempt the next step with my other foot.
There have been times when I have walked and my legs completely give out from under me and I fall. This is especially inconvenient when you are out in public and you fall down hard on the cement. This also leads to a plethora of fire trucks and EMS trucks being dispatched to your location, to make sure you are ok, and you have to look at them, humiliation on your face, and tell them that you are just fine, that your legs just gave out for a minute and you will be ok.
For me, Fibro means planning my days and activites on a day-to-day basis — needing to know exactly how i am going to feel that day. It also means not being able to work outside of the home — I obviously can’t get a labor job (although I LOVE labor jobs), sitting for extended period of times causes my tail bone great pain, sometimes my arms hurt so much that lifting them is nearly impossibly, and then there is that whole walking thing. This means that our family’s survival lays firmly on the hands of my husband, who although he has a law degree, hasn’t been able to find a regular job. So, on top of the pain that I feel, I have a whole hell of a lot of guilt, too.
Aside from the pain with my legs and hips, it is rare day when I am not plagued with a headache. I pop Advil and Aleve like it is candy. I lay down at night and I can feel my head throb. At times I ask my husband if he thinks that I have a brain tumor or if you thinks the thing that will get me is a brain aneurysm. I know it is all apart of the Fibro, but I worry. A. Lot. I also experience non-cardiac chest pain, which is good when you want to go out and live a normal life with your girlfriends. The looks you get are horrifying, though you know they aren’t horrified by you, but worried about what this means and what they should do.
I am thirty-two years old. I should be going hiking. I should be out wandering around this city.
Instead, I am living in pain almost every single day. And nothing makes the pain go away, it just fades into the background and pops up at the most unappropriate times.
Oh, and if my words get confused, or I am having difficulty understanding something that you say, it isn’t because I am a thick person. It’s because “the fog” and memory loss comes with Fibro too.
I went to the Krewe of Muses parade last night with Cleo. I had been told by a variety of people that this was THEE parade to go to and I would love it. All day, I rested, suffering from foot and leg pain, hoping that staying off my feet and taking a nap may dull it just enough. I forced my body to go, even though it was begging to just stay at home. A few hours later, after I arrived safely home, I could hardly walk. The pain was horrible. And here I am, trying to get the pain to a level that I can do it all over again tonight for the two parades rolling. Tonight, luckily, my husband is home so I won’t be doing this all on my own. Thank. God.
It’s hard, being 32 and experiencing this level of pain. It’s harder being a mom and not being able to take my daughter to do everything I want to because I am afraid of what will happen or the pain is just to much or my husband happens to be working that day. It’s hard not beating yourself up. We would be in a much better place financially if I didn’t have Fibro. We would have a much more active life. It’s hard not thinking that your husband deserves much more than a woman that is broken, him having to play caregiver some days.
A day with fibromyalgia is not a fun day. But it is a day. And at least I have one more day. Alone or not, I have one more day.
I remember the day that my husband and I loaded up our car and moved South. Both of us had been entangled in really bad marriages previous to one another – his dealing with a manipulative gold digger – mine dealing with an abusive control freak. His ended years before mine did, mine ended soon after my mother died, when I fled my former family home with nothing but a garbage bag with clothes in it, staying from couch-to-couch for a few weeks here and there, until I found a very, very modest apartment that I could afford on the minimum wage salary I was making, a consequence of being a stay-at-home mother for far too long to be taken seriously in the workforce.
We left Wisconsin on a hope and a dream, planning to reclaim our individual lives, planting the seed of what would become our collaborative life. We loaded our little car up with all those things we cherished – books, photos, music, a kick ass sound system, and our clothes – and hit the road for a twenty-two hour car ride, without stops, to land in New Orleans. This had been one of the most impulsive decisions I have made in my life, one necessary if I were to ever have peace from the demon that haunted my life for a decade. We stayed in a boarding house, not wanting to have an obligation to a lease for a house in a neighborhood that we knew nothing about, and shortly we moved into a house, furnishing it little-by-little, until we made it a home. When the children joined us, as planned, the rebuilding of our life was complete. A little piece of that was swept away, however, when it was ordered in Wisconsin that my youngest two would have to split time between New Orleans and Wisconsin with a father that placed a call once every few months, but who had an attorney (and his future father-in-law) that was not only of the state of Wisconsin family law committee, but also the Godfather to the Court Commissioners oldest child. Add into that equation the refusal to hear Louisiana-based testimony, and you have a situation bound to cause heartache.
We adjusted, though, my oldest daughter enjoying becoming an only child for most of the year. We got involved in her school. We laughed. We cried. We went through really hard times. We dealt with my health issues, an intrusive mother-in-law a few beads short of a full necklace, and my daughter’s Asperger Syndrome. In many ways, it has been an adventure, really starting out as a young couple, ready to conquer the world. In many ways we are still that young couple, with my husband searching for a job that utilizes his law degree, and me waiting patiently to take the Para Pro test to get a job in the RSD as a Teacher Assistant, and then, one day a teacher.
Those who know me tell me how strong I am, amazed at the things I have lived through to talk about, proud of holding my head up high, not allowing myself to be a victim or to make excuses, but accepting life for what it has been, and always holding onto hope. They have given me credit for my emotional strength, the quiet grace I hold myself in when things seem the darkest. They have admired that when life has demanded it, I have rallied and fought, winning in one way or another.
I’m not exactly sure of the answer so early this morning, as I ready my daughter to begin another day at public school, a school I wish she didn’t go to, but am thankful it is one of the better ones if she has to. I wonder if this is my failure or if it is a testament to my naive-nature, simply being happy with what I have and not longing for a whole lot more. It is an attitude instilled into me at a young age by my Irish father and my English mother, something they wanted to appear in their only American-born child, so she never forgot where she came from, so she never became like the children of their friends – spoiled and thankless, feeling entitled, forgetting the importance of family.
I sit here on the sidelines of my life this morning, after experiencing a truly traumatic event, and wonder if it is really that I am strong, or that I have done what I have needed to do to survive. Is it really that I am content with the little things, or am I merely complacent as to not have any hopes dashed to the floor when they are not realized by life, only little longings in my mind? Or perhaps I am simply thinking too much this morning, a direct consequence from experiencing a violation in the place I escaped with high hopes and dreams for a different life, a better life, a happier life and little to no sleep.