The Day After…

I am laying on my couch with an ice pack on my head, going through a mental checklist of things I need to do. I need to take a bath. I need to do the dishes. I need to finish my proposal. I need to re-ignite the petition. I need to eat. I’m shaky and my heart keeps beating fast and I don’t have an appetite. It’s interesting how hard it is to eat when you don’t have an appetite–just in the sense that like, you need food to survive and to maintain health and that sort of thing. I need something substantial like a sandwhuch, but that would involve going to the grocery store and HAHA, that’s funny, not going to happen. I’ll have one more almond thanks.

This day, my head, my house–all of it feels so dense with things to do that I either can’t do because my bode is broke or just have no idea where or how start. I probably need to sleep but I can’t, so I just picked up my phone and figured I might as well write these stupid thoughts down as I definitely do not do the things on my to-do list.

It’s a rough day physically but that was to be expected. We returned home from a trip to Salt Lake for my cousins wedding. I knew that I’d probably overdo it on the trip, but I so rarely get to see my family, sometimes you just have to live a little. But that means you’ll have to pay a little more, with money you don’t have. Don’t ask me how this metaphor ends because I really don’t know. Traveling home yesterday was another clusterf*ck of overwhelming noise and sounds and airport personnel yelling things and security guards barking orders and that strangely depressing wait in line without your shoes or belt–so vulnerable! Laptop out of the bag? Fine, fine, whatever you want. There is also the strange physical discomfort of flying– that pressure in your head, particularly taking off and landing, the loudness of the motor and that background, high-pitched white noise that makes everyone’s voice sound like it’s coming from a radio. It felt like my brain was swelling, and hey, maybe it was.

By the time we reached our gate for the first leg of the flight I was so cognitively overloaded I was holding back tears. Cry baby! I actually wasn’t sad, I mean I may have been sad to look at, but it seems now when I get cognitive overload that’s what happens. Tears. So.. that’s cool. Then we stopped in Las Vegas– now THAT is a soothing, nice quiet airport where you can really decompress. OK but seriously they should warn you when you get off the plane that all of your senses are about to explode and here are some free ear plugs and a helmet so you don’t die from… I don’t know, too many sounds? I can hear the coroner now say it in a British accent: “Twas death from too many sounds.” It felt like a few tiny deaths. We had time to eat in that airport and even be wallpaper in the food court was making me dizzy. It had diamonds, clubs, spades and hearts, which is very appropro for the destination but it all just felt like.. a lot. By the time we came home I wasn’t even tired– I was somehow a little wired but enjoyed some silence for a while before more Parks and Rec on Netflix. OK, this is getting boring.

The good news was how well well I felt for at least 3 days of the trip–and they were the important days, too. Of course, I take enough pills to knock out a linebacker, so that always helps keep me somewhat functional. But in general I’ve improved functionally since August, which was a hot disaster with a lot of time being useless in bed. About a month ago, I began taking an anti-viral (Valtrex) for HHV6, Cytelomegalovirus, and possibly a virus that hides in the dorsal root ganglion and can cause a lot of head and face pain. (I’ve basically had a headache for seven years and it spread to my face roughly three years ago. Woo Woo!) So far the pain isn’t noticeably different but I’m moving along with more ease and in the right direction. Yay. Maybe it was the mountain air. It actually snowed while we were there. It was a nice, balmy 93 here today :)

Maybe it was seeing a whole side of my family that I never get to see. And as much as I wish we saw each other more often, it really does make each visit we have together feel pretty special and end up epic in some funny, legacy-leaving way. Like that Christmas when my mom got mad at us for having a bonfire and said we were being reckless and stupid and someone was going to catch their clothes on fire. We laughed her off when she went inside, and then ten minutes later my brother-in-laws pants totally caught on fire. Pretty stupid to be waving the palm tree branches around as they rained down fiery leaves, but, also hilarious. My sister arranged for roughly 20 of us to stay in this ginormous house that I am convinced was used for a family of Sister Wives. There were just far too many weirdly placed exit doors with locks, too many odd rooms where it didn’t all make conventional sense. Hard to explain.

Anyway, all the love and laughter and piano playing actually energized me and I did better than expected. Major bonus: there was a piano in the house. Second major bonus: my brother Doug, professional jazz pianist and teacher, at your service. Add them together and you’ve got yourself a strange rendition of the song “What If God Was One of Us?” because apparently my brother Nick has really weird taste in music. Doug serenaded us intermittently with some improvisational  jazz, and like always, took requests. So of course, when everyone stumbled inside the house after the wedding, feeling nice and toasty from the matrimonial alcohol, it was only right that we all belted out “Piano Man” at probably an obnoxious volume, with some periodic hugs and a few sloppy cheersing of glasses. We toasted to the dead people and then played all the games they had downstairs, including ping pong, which I think I might actually be decent at. I’m not certain, I may have just played people who were really bad at ping pong. I do curse a lot when I play for some reason. Tisk tisk.

It felt good to be surrounded by people again, and experience the familiarity of so many people, and love and noise and general “togetherness”,  whatever that means. I just know it’s rare and fast and doesn’t happen very often, so I soaked it all up before returning to real-life, which is much quieter, and less cool. Waking up Monday was the first day my body said “OK no more though. Like really, I’m out.” And that was OK because there was nothing left on the agenda but to fly home which, was in fact the toughest part of the trip. (“First world problems” I know I know.) So now in the aftermath I lay like a pile of laundry, running through the things I need to do but will still most likely not get done. Dishes. No, eat first. But, no appetite. No real food. What a train wreck: get it together!

There is so much more to say but this is starting to feel like a bore and I still need to eat. How many times have I said that? Anyway, the search continues–how to be sick and alive in the loud, fast world– also how to let things go that you’re unable to do the moment you want to do them, without like, giving up on life. It’s only the day after, I guess the dishes can wait. They aren’t going anywhere.

Here’s a gem of a photo that my cousin Brittany took of at least most of us. It feels like an oddly accurate representation of us all. If anyone in the family doesn’t want to be on the blog…sorry…but you are. I was going to say I’d fix it, but we all know I wouldn’t fix it. I still haven’t eaten! I must eat. Can you spot me? I’m the idiot.

Health, Happiness, Recovery

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Duck Sauce

Congrats Ryan and Wendy! We love ya.

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Cheers To a Slowly Dying Christmas Tree and the Start of Something New

My Christmas tree is still up. We might start there..

Two Fun Facts. Even when your Christmas tree begins to shrivel and sadly die in the corner of your living room:
1. The decorative lights still emit that magical glow when turned on at night and you’d never know their was death lurking behind them.
2. It still smells like Christmas! Even while dying, that one of a kind sap-infused, woodsy, cinnamon smell still infuses the room from the corner where the tree sits, but looks more like it’s floating.

I still catch random whiffs of Christmas when walking by or while reading on the couch. It’s like the original air-freshener, and since the scent is so sporadic and only comes around once a year, like Girl Scout cookies, encountering it feels uniquely special. Like glimpsing a shooting star or seeing a bald eagle. Sometime its feels like a nice gift the tree is sending my way. I think, Hey thanks tree, you have a good day too! What I’m saying is, you begin to talk to things that are not human when you live alone, and that’s OK. It’s bound to happen. I think. I’ll ask Monty.

I tried deciding whether a Christmas tree still hanging around on January 22nd that also happens to be dying is depressing conceptually or not. I say conceptually because I can say from an actual standpoint, it most definitely is not. It still brings all the joy it did from day one. I am a Christmas enthusiast and my fervor has always extended to the art of holiday decor and the unmistakable enchantment of a Real Live Christmas Tree. Everything about them makes me happy. Until I start seeing them on the corner of peoples driveways laying on their side next to the trash can– what a tragically depressing image to encounter. Or it always was for me, growing up. I feel that keeping the tree around this long and seeing it to its final days, I’m squeezing every ounce of wander out of what Christmas trees have to offer. It’s like The Giving Tree! Except in this case at the end, we burn it in a large pile of leaves and miscellaneous dead foliage and branches out in the prairie. But I find this to be a far less sad ending to the tree than awaiting its demise on a driveway and being tossed in a trash truck full of rotting food and discarded junk. I wonder if it freshens up the smell of the garbage truck? Probably not. Anyway burning the tree returns it to where it came, and whether that works out scientifically or not, for me it feels like a much kinder fate. And symbolically more appropriate.

As for outsiders, seeing a dying Christmas tree still lit up in my living room might look like a lapse in civility or domestication on my part– some kind of improper etiquette. Like having dishes in the sink or a mess of a house when company shows up. It’s always a little shameful when people visit, especially unexpectedly, and your place isnt tidy. Somehow it feels like a reflection of you– whether clean or dirty, we’ve come to see dishes in the sink as a little pitiful and a perfectly sanitary house as the height of a life in order! But order doesn’t imply anything moral or productive. Then again, a really dirty house does start to make you wonder about the direction someones life is going. If you haven’t done laundry to dishes in over three months, it might be time to talk to someone. It’s funny how having a clean house gives us a sense of pride and sends the message of “I’ve got my shit together and things are great!” Somewhere deep down, don’t we all secretly wish our homes smelled faintly of Pier One Imports? THAT is a fresh, successful smell if there ever were one. Unfortunately you can’t detect what your own house smells like, you can’t discern your own smell, so you kindof just have to keep up with the cleaning, pray that your pheromones mix well with your dish soap and the wood of your cabinetry and whatever else is informing the air of your house, and hope for the best. Many houses I can think of from growing up have distinct smells to them, that are still there when I visit today. It always elicits memories of certain times way back when. Funny how just a smell can be so tightly tied to a person or experience. I can still remember the exact smell of my grandma baking homemade bread. It takes me right back to childhood, to punching down the raised dough in those huge seventies-colored bowls, and to that first piece warm out of the oven. Son of a nutcracker I am hungry now.

Anyway, I imagine somewhere in a book of manners and proper social behavior, there is a responsible cutoff date for the Christmas tree, and if yours is up past that date, forget it. You might as well quit your job and stop tying. For me I don’t have a real job so there’s a personal loophole–if in fact, Jan. 23rd is past the cutoff date for tossing out the tree. Anything after that is an obvious decay of domestication. Or maybe just poor manners.  Maybe I’m still in the clear because it’s still within 30 days of Christmas, and if I can still technically return a gift to Target, then I should be squared away with the tree. Either way, none of this actually matters and obviously you should keep your tree up as long as it makes you happy and does not accrue mold. Isn’t that how we justify killing them for the purpose of holiday decoration in the first place? By enjoying and appreciating their beauty and assorted pleasures for as long as possible, we sort of redeem cutting them down. Sort of. I don’t know, what is the environmentalist take on real Christmas trees? Is real or fake the greener choice? Probably fake, right? Let me check.

Well that was a hellstorm. I’ll save you some googling time and just say the conclusion to ten articles on this very subject is that the science is still out on conclusively naming one or the other as better (or worse) environmentally. Worth noting is that artificial trees are created using this special ingredient calling PVC (polyvinyl chloride) which is not recyclable nor completely biodegradable. Also vinyl-chloride is listed as a human carcinogen. You have to use the artificial tree anywhere from 7-20 years (there are multiple conflicting studies)  in order to make it less harmful to the environment than using a real Christmas tree. Also at least 90% of real Christmas trees are farmed, which keeps the natural population healthily sustained. Hmm, one can emit hazardous fumes in too high a dose, and one provides magical Christmas dust that enlivens the senses and makes miracles. So I am biased clearly, but I still say down with artificial arbor. Go real. Go green. And inhale that magical smell until March if you want to.

Its funny, but even though Christmas is well over, I’m still recovering from the festivities I partook in. Some of it is my fault; I have a hard time doing what’s best for myself in terms of the illness, and doing what is fun and adventurous and happy in the moment. This disease is so insidious, it doesn’t let you know how much you’ll have to pay until you’ve already done the damage. Its like going swimming today, but not having to hold your breath until tomorrow. Say you swim in the ocean and get distracted by the tropical fish. You go under water following them around, and all the while you think “I haven’t been under that long, I’ll definitely be able to hold my breath this long tomorrow when the time comes.” You think that because you’re stupid and you didn’t learn your lesson from last time. The next day comes and you have to hold your breath for all the times you went under water, but on some of your sub-surface excursions, you were distracted by awesome sea life and stayed under like 3 minutes. Now you’re trying to hold your breath for three minute stints and you’re blue in the face and passing out and thinking, why did I go under the water. Why Mary WHY. So, that’s one way to explain it. Anyway, Christmas is happiness and this year it was a great one. Sometimes the dive is worth turning blue.

I’m not sure what it is exactly, but I’ve had the feeling for a while now that 2017 is going to be a very special year. I can’t say how specifically, but I sense that big changes are in store. Important changes. Great changes. And that the start of something new and big has already begun its course. It’s only an intuition so what do I know. Maybe anything compared to the dismal 2016 will seem auspicious by default. But something tells me it will be more than that.

I never saw myself in the world of advocacy or politics, but tomorrow is the first day of a very important journey that I suppose will include both. It’s the first time I will meet with a politician to talk about me/cfs and address the funding issue, in person. I’m meeting with the Louisiana state director, Brian McNabb, who works in the office of Senator Bill Cassidy. I have no idea how the meeting will go. Of course, I have my talking points prepared and there is only so much my brain can store. My main is goal is to tell the truth and leave a lasting impact. In my imagination the scenario goes like this:

We start with some charming banter yada yada yada, he pours two glasses of whiskey, and as the ice clinks in our glasses I say “Look McNabb, we need $100 million from the NIH for this disease. Minimum. And we need it yesterday.” He thinks a moment, sips his drink img_6334and says “You know, after reading the riveting history of this disease, the outright neglect, and the heartbreaking stories of so many who’ve been devastated by it, I’d like to offer $200 million toward biomedical research. It’s actually the more appropriate and fair amount.” I walk over, raise my glass to toast to this proposal and say “Wonderful Brian. You’re doing a really incredible thing.” Clink!

“How soon will the funding come through to the NIH?” He thinks a moment, “I’ll have to get a few documents in order, but I’d say by tomorrow around 4. Does that sound alright?” I begin to put on my jacket to leave. “Sounds fine.” He opens the door, “I’ll let Mr. Collins know about the funding change. Anything else?” Walking out I hesitate, stop, then turn around. “Actually, I have these parking tickets in New Orleans I never paid-” “Ms. Gelpi! Don’t be ridiculous! I’m not a genie I can’t just say ‘poof!’ and fix everything!” I blush from assuming something so stupid. “You’re right, I’m sorry. It was foolish to ask. Forgive me.” I turn my head away a little embarrassed. He nods affirmatively and ushers  me out. Before he closes the door I yell inside just to be sure “But we’re still on, $200 mil to the NIH tomorrow by 4? Right?” He already has a phone to his ear and looks distracted by some new matter. “Right. 200 mil. 4 o clock. G’bye now.” The door shuts and I turn to walk out, grabbing a handful of Worthers Original candies from the crystal bowl on the secretaries desk. She doesn’t mind. Outside it’s chilly as I walk to my car and my legs are already aching, but I don’t mind, it’s too happy an occasion. I arrive at my car and immediately notice a boot on the front tire because my meter expired while I was inside. There’s also a notice that says I have dozens of unpaid parking tickets and my car has been seized. I turn around and march back toward the tall marbly building. I dial my mom, walking up the steps. “Well?” she answers with anticipation. “Mom! I’ve got good and bad news, which would you like to hear first?”

The End

That sounds like a reasonable scenario, right? I’ve heard that’s how Washington works so, I’ll keep you posted. :)

Health, happiness, GREEN.