Allow me to introduce my brothers…
I’ve had the pleasure of spending a week in Miami with my two brothers, Doug and Nick. Though they are in their 30’s now and I’m in my late 20’s, I noticed during our time together that not much has changed since childhood. (And since this photo.) Doug and Nick are only a year apart in age, but couldn’t be more different. In fact all four kids in my family are incredibly different, so much so that I’m often wondering how we all came from the same two people. But, my parents were some dynamic people, and they produced, well, more dynamic people. From a young age, I took solace in the relationships with my siblings. But hanging out this last week with my brothers made me remember the insanity that ensues when more than two Gelpi kids are in a room together. Here’s an idea and photographic proof of the different ways it can go. These photos are from childhood, but I assure you nothing has changed.
Either everybody’s laughing…
Or just my brothers are laughing and someone else is crying… (like my sister, seen here)
Since I was kind of a loser/loner growing up, my brothers, more specifically Nick “adopted” me into his social circle; not really concerned that I was 5 years younger. I remember smoking my first cigar at age 12 and staying up until 6 AM one morning playing a rugged game of monopoly. They all got drunk so I won! You’d think ‘Hey! That’s wrong! You can’t be letting a 13-year-old puff a cigar or let her pierce her upper ear!’ But truthfully, it was never dangerous or irresponsible. My brother kept close watch over me always, like a good sibling does.
One Halloween, when I was 11, my friends went trick or treating without me and I was at home all down and out. When Nick came upstairs and heard the story he said “Put on your roller blades! Lets go!” (Rollerblading. I miss that shit.) Anyway, even though he had plans with some friends, he instead drove his loser little sister to the neighborhood which always gave the best candy. He accompanied me until my bag was full, and didn’t laugh so hard when I tripped UP the stairs from my stupid roller blades getting caught as my second grade teacher opened the door mid-fall. (Seriously, true story.) Anyway, it was nice of him to do that. I always remember that gesture.
Then there was high school. My senior year, I was taking my boyfriend to the Sweetheart dance. I was kind of dating a nihilist but I was 17 so I just thought he was emo and cool. My brothers said they would chauffeur me and my date to the dance, which I thought was a fun idea! So imagine my gratefulness for them when we took a right turn onto my dates street, and they rolled down all of the windows in the car and blared the theme music from Star Wars as loud as it could possibly go. They slowed the car to a crawl so the whole neighborhood knew we had arrived. I begged them to turn it down, but it was just so damn funny, that I couldn’t be embarrassed, I just had to laugh; which happens a lot with them. Or crying. Either one. The nihilist and I broke up that night coincidentally.
So none of those stories involve farts, I know. But trust me, there are plenty. Like this one. I thought we’d take it one at a time.
One night after dinner on Rich People Island, the boys and I got on our golf cart to drive home. Nick was the driver, me in the front, Doug on the back. When we drove by the dock Nick saw something in the water that got his attention, so he stopped and parked the golf cart, got out, and went to check it out. Of course, like clock work, Doug jumped in the driver’s seat of the golf cart and floored it away from Nick, laughing and hollering the whole way. This is probably the 4th or 5th time Doug stole the golf cart from Nick. Anyway, we finally turn around and pull up beside Nick, and he’s like “Doug let me drive!” And Doug’s like “Fine!” So just before Doug gets out of the driver seat, he FARTS, really loud, and kind of leaves his own little “bubble” for Nick to enter. This of course, makes Doug begin to laugh as we drive away. But it’s late and quiet on Rich People Island and there are people eating outside at a nearby restaurant so Nick is trying to hush Doug up. But Doug’s ridiculous laughter is making me laugh, and every time I laugh, it makes Doug laugh harder, and louder. Which makes Nick hush him more, which begins the whole cycle over again. It reached an obnoxious point where Nick stops the golf cart and refuses to leave until everyone quiets down and stops laughing…which, you know, failed. Luckily, I had a camera with me and it seemed like such a Gelpi brothers moment, I decided to roll tape. -Enjoy.
I can’t explain it, but my brothers gas has always been a hot topic in our family–sometimes humorous and sometimes NOT– and I just don’t see it going away anytime soon. I’ll never understand what makes a fart so funny. Anyway, I hope that made you laugh, because when I feel down, I watch that video and I can’t HELP but laugh! That’s the best part of laughter–totally contagious. I guess I should note here that most of the time, we all get along. See?
Health, Happiness, Brothers
I’m writing today from a very foggy place. I have to concentrate really hard when I consider what day it is, what the date is, and when someone asks me questions it takes an unwarranted amount of time to answer. This is my 3rd day in bed, and as much as I thought today would be better since I literally slept until 6 pm yesterday and fell back asleep at 9 pm for the night– I’m still not feeling much more alive. Luckily, my mom and I are still holding down the fort on rich people island. One of the worst parts of being in a full-blown crash is how isolated it feels. Luckily at this residence, my room has huge windows and an amazing view, so while I was only awake 3 hours yesterday, at least I had nice things to look at.
I know to an outsider this seems ridiculous. And I’m sure there are people out there thinking “You’re simply sleeping TOO MUCH, and that’s why you’re so tired!!!” If I had a nickel…. It’s very hard to explain what my body feels like amidst a crash, and this one is one of the worst I’ve had in a long time. I think it was Laura Hillenbrand, author of Seabiscuit and longtime CFS sufferer who said “Calling it ‘tired’ is like calling the atomic bomb a firecracker.” The only reason I got out of bed yesterday was to go to the bathroom and to take medicine. My mom tried to wake me up a few times and get me moving, but the thought of being upright nauseated me. Finally at 6, she made me drink a huge class of orange juice and eat toast and eggs so my body wouldn’t be running on empty. While I ate we watched a show on the science channel about the science of memory, dreams, and what makes us who we are, which was pretty mind-blowing. But by 9 I had fallen asleep again. I remember really really wanting to brush my teeth last night but standing that long just wasn’t going to happen, so I skipped.
Beyond the ridiculous fatigue are other symptoms that have been difficult to find relief to. I’ve had a non-specific pain radiating throughout my body, kind of like my bones are aching, that did not respond to pain killers. I’ve had a headache for a few days that is not a migraine but won’t go away does not respond to regular meds. Today at least the pain has let up and the headache has improved, but that heavy, wet-blanket fatigue hasn’t gone anywhere yet. When I woke up around 9 this morning, I sat up slowly in bed just to have my heart race and beat loud in my ears followed by a dash of dizziness to seal the deal. Good morning! God loves you!
The last symptom I’ll share, because we’re having so much fun here, is one of the most bizarre. I have this extreme sensitivity to sound that at times turns me into a crazy person. When I first became sick at age 9 this was one of my first and most jarring symptoms. Things like a hair-dryer, vacuum, or even the neighbors lawnmower were suddenly somehow painful, almost unbearable. I am noticing now that when my symptoms get bad, this sensitivity becomes heightened. It isn’t just loud noises either. For instance if someone leaves the laundry room door open with the washer or dryer running, I basically can’t relax or think straight until it’s closed. If someone is playing the radio in the car and there is static in the background, I feel like my head is about to explode until we switch the station. And it usually happens in the middle of someone telling a story that the sound of static becomes so overwhelming it’s all that I can hear, often causing me erupt in an erratic verbal explosion like “FOR THE LOVE OF GOD CAN SOMEONE TURN OFF THE FREAKING RADIO?! I FEEL LIKE I’M ON CRAZY PILLS!!!!” And then everyone looks at me like I’m on crazy pills. But in my brain, the sound is the equivalent to nails on a chalkboard. I’ve found that many people with CFS have at least one of their senses which is painfully heightened. For my mom it’s her sense of smell; one whiff of the wrong perfume and she can get an instant migraine. Don’t we sound like a bucket of fun!? We are. :)
On day 3 in bed, I was mulling over the last week in my head, trying to piece together the puzzle of what-in-God’s-name happened to land me in bed this long feeling like I was hit by a cement truck and then rolled over by it once or twice. There are a few possibilities and I’m pretty sure it was a combination of all of them which created the perfect storm, but one in particular: I pushed myself for too long. Since my family is rarely all together in the same city, I hate to miss out on anything when we are. My brothers are two of my favorite people–they’re a lot of fun. They’re also two of the most hyper people I’ve been around. They were very go, go, go while they were here, and since I love to be around them, I tried to go, go, go with them everywhere they went until I die die died. It’s the same lesson I’ve had to learn before that I will continue to learn until I get it right; I have to limit myself. No one will do it for me, mostly because no one else has to pay the price of overdoing it, only I do. And I’ve overdone it so many times you’d think I’d have it down by now, but I don’t. I have to learn to say no. It does mean missing out on some things that I’d like to partake in, but the alternative is missing out on 3 days of life, and you never get those back. The doctor calls this being proactive vs. reactive. If you can sustain yourself by limiting things and paying attention to your body, you can pretty effectively avoid crashes and super-sick days. There were a couple of days last week I didn’t feel great but made the decision to go to the beach anyway, or go fishing anyway, and those anyways ended up being pretty detrimental.
Just so we’re clear, I don’t write posts like these to be depressing. I’m not doing it to complain or fish for pity. It was my goal from the start to try my best and paint an accurate picture of what life with this illness looks like. And sadly, some days or weeks, it just sucks. No getting around it. At the same time, I remind myself this won’t last. I study the things that got me here, and I thank God I have family (mostly Dr. Mom) to see me through the really tough parts. I wonder a lot how anyone would survive this illness alone, and I honestly don’t think it’s possible. Everyone I talk to in the waiting room at the specialists office has one primary thing in common; they have one person to whom they owe their life. A spouse, a parent, brother or sister, child or friend. CFS isn’t terminal. You don’t die from the symptoms. But I really can’t imagine where I’d be if I didn’t have the help of so many people in the past. Sleeping under a bridge somewhere. Keyword: sleeping.
In the light of friendship, I’d like to share the Gelpi’s rendition of one of my all time favorite songs from one of my all time favorite shows: Thank You for Being a Friend, from the Golden Girls. Luckily my brother Doug can basically play any song you ask him to on the piano, so he did me a solid. My voice is terrible so I apologize in advance, but hey, it was fun. This is dedicated to Emily and Kaitlin aka Matt Damon.
Health, Happiness, Crash and Burns