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 enjoy non-fiction in all types, but particularly enjoy books that introduce concepts or exploration and follow with examples and stories of individual experience to illustrate concepts, inquiries, and argument. I wasn’t exactly sure what I was picking up when I picked up Dirty: A Search Inside America’s Teenage Drug Epidemic By Meredith Maran, but I found it at the library sale and thought that if I didn’t learn anything from it, perhaps I could pass it onto the social worker at my daughter’s school.
Teenage drug use is a subject that hits home for Maran. She reveals that one of her son’s dove deep into drugs in his teenage years. She looks inside the adolescent drug rehabilitation industry, drug courts, and juvenile detention facilities following three drug-using teenagers: Mike, Zalika, and Tristian. The three kids come from different backgrounds, have different dysfunctional familial units, but all find themselves constantly in and out of trouble over drug use. It was an interesting book as you follow the kids. It was also a heartbreaking book.
I don’t understand drug use. Call me a square or lame, but I don’t.
The first time I ever saw pot was when I was covering a band and watched as the bassist smoked pot from an apple. The only reason I was able to see this is because I was backstage watching the show. That was this year. I am thirty-two. Coke, Meth, Crack. None of that registers to me, except from what I have seen on Intervention or Sober House, and I ask my husband questions about drugs all the time. He has his BS in Psychology and worked briefly at a detox center.
I cannot understand what leads someone to use drugs. let alone become extremely dependent on them. From what I have seen, people act like idiots when they are high. They do stupid things. They get into trouble.
What keeps some people from getting involved in drugs and what keeps some people from not? What trigger goes off in a person’s head that leads them to decide that drugs are a place to go? I understand feeling hopeless. I understand feeling despair. Perhaps the thing I don’t understand is feeling.. desperate? I’m not sure. I think about this, though, and think about my children. Will the split custody affect my youngest two badly and will they be likely to turn to drugs, particularly since the one parent that would monitor that will have them less than the parent that needs to be monitored himself?
Or what about the kids I interact with at my daughter’s school every day? What is going to stop them? How many of them are going to be Mikes or Zalikas?
At any rate, an interesting read, leaving me to question one thing:
If AA and NA want people to admit that addiction is a disease – which is medical – why do they expect people to depend on a higher power – which is spiritual – to fix it? Just wondering.
Last Sunday I was mugged in what I considered one of the safest places to be in this city. It has left me paranoid, hopeless, angry, pissed off, and determined to not let some jerk-off run me out of this city. Many will say this is foolish of me, this determination to stay and fight, but they just don’t get it. This isn’t just a place to live. This isn’t just a city. This is New Orleans, dammit, and that MEANS something – regardless of how foolish our mayor behaves or what work is still left to do. It’s like a greek organization – from the outside looking in, you can’t understand it. From the inside looking out, you can’t explain it.
So, instead of going to the book club on Sunday like I intended (Sorry Elizabeth!) I ended up sitting in my home, on the couch, near fetal position, jumping at every noise, waiting for my husband to get home. I spent a lot of Monday like that too. And Tuesday. Yesterday morning I picked myself and wrote a proposal for my daughter’s school, hoping to set up a Parent Association, which will hopefully turn into a PTO at some point. I set up a few shows to cover. Scheduled a couple of interviews. Did some writing. Tried to make things as normal as they could.
I am taking it easy for the rest of the week. I am starting to get a case of the respiratory virus going around and for me, that’s not good. So, I shall stay inside my bat cave and read. This is my happy place. It would be a happier place with a Snuggie, but alas, no Snuggie yet. Though I did get told my a friend of a friend that they are itchy and like cheap felt, not fleece. Am tempted to go to Wal-Greens and feel for myself.
Nothing really interested or entertaining going on, except trying to make it through what happened on Sunday.
And listening to music. Eyehatgod, Black Flag, The Smithereens, The Misfits, and The Ramones.
Elizabeth Wurtzel annoys me. Really, she just does. Right now I am sentenced to reading each of her books and to get through them has been a pain-stakingly difficult process. I just want to tell her to buck up, make better decisions, and quit action like she is the voice of my generation because, dammit, she is not MY voice, nor is she or was she ever the voice of my friends. Excuses, excuses. That is all that I am reading. Someone needed to really hand her a life where she didn’t have the opportunity to make excuses, but had to be busy living so she could survive. It isn’t that I don’t understand mental health or mental illness or addiction. I DO. It’ s just every book, every essay, and every article is the exact same thing.
Yes, I am over-dosed on Elizabeth Wurtzel at the moment.
Class today was great. The kids were so excited to see me today and gave me a great welcome back. I helped them with geometry, learning about symmetry, and did some correction of English – work on commas. I leave the classroom with a full heart, despite some of the difficulties and problems I witness, I always do. I am excited to go back tomorrow. Tomorrow is creative writing.
I thought it was interesting that the kids were talking about the murder of Wendy Byrne. Half the class is split that the parent’s turned the children in because it was the right thing to do, the other half believed the parents were sick of dealing with the children and didn’t want them anymore so that is why they turned them in. I think that is interesting, though I am too tired to look at what that really means. Another interesting thing happened today. My daughter came up to give me a hug and one of her classmates that has taken a particular shining towards me asked, “Do you guys do that a lot? Hug?” I told him that yes we do. He then told me that his family doesn’t. That broke my heart. I told him that my family wasn’t very affectionate either, which is why I make sure I am affectionate with my children. I told him that he would have to make sure he did that with his kids. He said he was never going to have kids, not with how crazy the world was. I thought that was very astute from a nine year old, and a bit sad, too.
I am reading a book on human trafficking written by Linda Smith, who served in the U.S House of Representatives for Washington state, and founded of Shared Hope, International. Shared Hope, International is an organization founded to fight human trafficking, being inspired by a trip to India and seeing young girls caged up and sold for sex. Her organization has done a lot of work. In reading the book, a short little number, it is difficult not to cringe as she describes what she has seen. If you can get past the calling-from-God-isms that she writes about here and there in the book, I suggest going to the Shared Hope website and request your free copy. More needs to be done. I am currently reading more about human trafficking in the United States, particularly in Louisiana, and the things that I am learning – it is disgusting that people are treated this way.
My daughter was very sweet tonight and left a card on my bed for me. It was a thank you card and inside she wrote:
“Mom, Thank you for loving me so much and everything you do from cheering me up to making me smile. I love you like a puppy and will take care of you every day. Love E”
I totally needed that tonight, as I was a tad bit cranky. I have the best daughter. I really do.