Closest You'll Ever Get To This Side Of Heaven

“Which one of you goes by the name Sarah?”

“That would be me”

“Awesome, My names Paul and you’ll be risking your life with me today”

Those are the scripted words my Tandem Skydive Instructor spoke, hilarious but also made that nervous giggle come about. I wasn’t nervous booking, signing my life away or driving to Sky Dive City. I wasn’t really any emotion other than excited and curious to see if I would have Cataplexy mid air. Paul grabbed me a harness and I stood about while we got rather up close and personal tightening and adjusting each strap.

“I think this one goes like this”

“Wonderful, is that an educated guess?”

“No, I learned everything I know on YouTube so it’s pretty accurate”

“YouTubes great for this stuff haha”

He tightened a few things, asked how tight it felt and asked me to do a few motions to make sure it was the right fit. Paul then walked me through a few of the steps we would take, seeing as he would be strapped in behind me the next little bit were going to be rather close.

“We are going to be sitting on a bench, you in front of me, straddling the bench. We will fly up to 13500 ft and I’ll then attach us to one another.”

“Basically I’ll be your little spoon”

“Unwillingly yes you will aha.”

He then went through the hand gestures he would be putting in front of my face. The different positions we needed to be in to walk to the opening in the plane where we would jump. The position we jump in, head back arms holding on the harness. Then the 3 taps that I would feel once we took the leap of faith. Three taps means bring your arms up, and your feet back…the fun begins. We would turn/spin and then James Bond fly through the air. From there he would give me the reins and I could do what I please for the rest of the free fall.

Paul stuck out his finger and said

“This is the most important, it’s the international sign for pull your parachute.”

“I HAVE TO PULL IT? That’s not safe”

“Well if you don’t do it within the time span I ask you too I have ability to pull it too”

“That’s safe, I can deal with that”

We then did another check on the harness, making sure it was tight where it should be and loose in the one spot for the jolt from pulling the chute. Time for the plane ride where more unsure giggles from myself happened. Scripted jokes were then told by both Paul and Maples Tandem Jump Instructor Elias and of course more jokes about there experience in skydiving. Regardless I wasn’t nervous, even looking out the plane as we got higher and higher reaching the clouds. I was worried I would freak out at the ledge, I was worried I would forget one of the many symbols we went over but I was excited. Everyone in the plane was pumped, handshakes happened all the way around and then they all back flipped out, spiraled out or held onto the side of the plane and drifted away. It was exhilarating to watch.

I turned to Maple, stuck my pinky out for our ritual pinky promise for just about everything in our life.

“Pinky promise you’ll see me at the bottom alive”

From there Paul and I squat walked attached to one another to the ledge, his final words before the jump...

“This is the closest you’ll ever get to this side of heaven, enjoy it”

I looked down and through the haze of clouds you could see the green specks of land. I didn’t feel nauseous it honestly just looked surreal.

We leaned forward, leaned back, the leaned forward, and like that we jumped out.

The first seconds were the feeling of falling, that feeling you get on the way down on a rollercoaster. It lasted maybe 3 seconds, and then it was just pure bliss. It felt like flying, it felt like floating, and it was Earth like I’ve never seen or felt it before. The air felt different to breath, the silence was oddly soothing. We spun right, we spun left, and we flew through the sky. It was the quickest yet slowest minute of my life. Parachute symbol came into my peripherals, so I felt my harness all the way down to my side and found the pull. I pulled straight forward, and just like that we were jolted into a different kind of floating.

The next minute was spent turning in circles making sure I saw everything I just jumped over. Practiced our landing technique and took ourselves over into the landing area. Slow left, then a quick left and we floated down, legs up ready to slide in on our bums.

Safe and sound and on the ground in one piece. No adrenaline rush, no cataplexy, just pure ecstasy. 

I'm still alive

I’m not saying Jinx cured my narcolepsy, I’m saying that this dog has helped me or forced me to find a routine that works with my narcolepsy.

These past few months I’ve honestly felt like I don’t have narcolepsy. I’m up early, in bed early, and getting fresh air multiple times a day. I believe the consistent routine, fresh air and joy of having a dog have been the largest contributing factors to my overall wakefulness. I never had a motivating factor to be awake early, let alone out walking regardless of weather…but now with Jinx I have no options. We wake up at 6am; we walk for 10-20minutes (weather depending). We go home, we eat a healthy breakfast, we play and then I get ready for my day. Some days I even squeeze the gym in at 5:30am. It’s really been awesome for me. I feel awake, I feel motivated to get things done, and I am overly happy to be looking after the little munchkin. We walk a few times each day and the sunshine is nice, it’s working and for that I am grateful.

My summer is looking exciting, I’ll be done working May 1^st. From that day on I’ll be working my own hours between photography and my Mamas ceramics business. I can’t wait to see where the journey takes. I’ll be happy with the amount of work that I can accomplish as I’ll be able to dedicate more of myself. I might have less money, but money isn’t everything when you’re finding joy in your daily endeavors.

I’ll be doing a trade show at the end of the month, it’s a Mommy show. I’m excited to take photo booth style pictures of little toddlers and babies, it will be a neat experience. I hope the investment brings in more clients, and gets my name out there. I’ll be praying for good weather so that they have a good turn out!

All in all, I’m happy. I’ve moved out, I’ve found success and I’ve got a lot of love in my life. Thanks parents for letting me get the little rascal 6 months ago, best decision you ever made ;) haha

Failing the Balancing Act

If work life balance were a class I’d be flunking it like it was a talent of mine. I have worked the past 14 days straight, and I will continue to work for a total of 25 days in a row. I will have one day off and on that day off I am certain I’ll spend half of it editing all the photo shoots I need to finish editing. I am pretty bitter about the situation.

I get that I’m young and when you’re young you have to work your ass off… but I also hate the struggle it is to wake up in the morning. Sure I am still getting 8 hour sleeps, but that’s not enough when I’m working every damn day. I’m exhausted, mentally and physically. I want a break and Christmas is just more chaotic than it is a break when it comes to working a job at the mall.

I also get that I could say no to people when it comes to working, but when I’m in my first year of my Photography business saying no is the last damn thing I should be doing. Therefore I juggle my schedule to accommodate clients and support my growing business. Business has been booming but with how busy I am …I’m almost bitter towards how successful I am becoming. I should be celebrating how great things are with my photography, but instead I’m stressed out and hating how all my down time is spent in front of a computer screen.

Maybe one day I’ll have a life and a career and all this grumpy bitterness will be a thing of the past. I really just need a day spent curled up in a ball feeling sorry for myself, otherwise a day will come and I’ll have a meltdown crying to my parents about how life sucks and it’s not fair and I hate my narcolepsy lalalala.

Advice; Take it or Leave it

I got a lot of questions from parents with kids about college and I did my best to answer how my experience was; I figured I would sum it up here and break it into the advice I would give you. My college experience was amazing; it was one of the best things I did for myself. Moving away from home, playing soccer and pursuing my interest in photography. For as great as the entire experience was I’d be lying if I said I didn’t have trouble managing my narcolepsy. Ask my mom or dad how many times I called them crying. She probably won’t remember the number but it was tough for me to balance school, soccer, health and a social life. I can’t say it was ever in a perfect balance, I felt that a lot of days I had to pick 2 and hope the other 2 wouldn’t suffer too much. My parents, each time listened and sympathized with me and at the end of the conversation they said. “No ones requiring you to do all that you are doing” It was always a reality check for me. I didn’t need to get an A in every class, I didn’t need to be on the starting line up for every game, and I didn’t need to be out every other night being social to maintain friendships. I was the one holding myself to this high standard and when I didn’t reach it, I was the only one who was suffering or who was disappointed in myself.

Apply for disability.

            If you don’t think you need it, step back reevaluate and think of the worst possible situation you might find yourself in and then go and file with the disability office. You might never use it, but your teachers will have a better time understanding you missing something, needing extra time or falling asleep if in their eyes you have always had narcolepsy. If you end up needing it and you’re not filed as disabled then you will look like you are just making up some random excuse when something does come up. Also note takers can be a huge saving grace for studying, reviews, and just as a general help to you doing well in class.

Teachers

            Some teachers are sadly no longer interested in their students’ education let alone their health. After the first day of every class I registered for, I took my professor aside said something along the lines of… My name is Sarah, I have a rare sleep disorder called Narcolepsy. It’s a medical condition that can cause me to fall asleep randomly. I am hoping it’s not going to be a problem in your class, however if I am to fall asleep during class I want you to know that I’m not doing it to be rude or disrespectful. I would like to be woken when I do sleep, but would appreciate your help in making sure it’s not done in an embarrassing way. If you have any questions about it or concerns please feel free to ask me about it at any time.

Usually my teachers were extremely understanding, asked a few questions and then moved on. However I did have the odd teacher that just blew me off and it was like K sick, kind of busy here. Not much you can do about those teachers, it will cause you more harm and disappointment trying to educate them on something they are choosing not to come to terms with.

Meal Plans (If you’re away from home)

            If your college has an option for a meal plan, even if it’s not the full meal deal but so many things per semester I would highly recommend it. I found I was so exhausted in between practices/classes and homework that I would pick napping over eating and I was rather unhealthy. Having the meal plan option could ensure you are eating on days where it’s just not physically possible to make yourself a sandwich.

Smart Schedule

            If you’re not a morning person and that’s where your main struggles are, do yourself a favor and don’t sign yourself up for the 3 hour 7am class. You’ll never make it consistently and you’ll waste your money. Don’t schedule classes from 7-5 with no breaks if that’s not a time frame you’re ever able to stay awake for without naps. I took a few evening classes to help with having breaks for soccer practice/naps and maintaining my sanity. I also took a few online courses so that I had the luxury of having a day off in the week for catch up.

Motivation

            I know it’s common to go to college right away and figure out what it is you want to pursue, but I highly recommend that you don’t go unless you have a motivating factor. You’re not going to want to do your homework let alone show up to class if you feel like it’s not something you’ve got strong interest in. I wanted to play soccer, and I loved photography as a hobby. If I didn’t show up to class or got bad grades, my coach was getting an email from my professors and I wasn’t going to play. I was beyond motivated to get those grades so I could play in every game.

Social Life/Party Life

            Parties are fun, drinking is fun, being social is all part of the big college experience. However it’s not a requirement and can really set you up for failure. That party where you stay up till 4am will all be a blur years from now, but that class you don’t show up for because you were out late will stick with you forever. I’m not saying don’t party, don’t be social but pick and chose your nights and you can go to a party for an hour, not drink, and leave. If they’re friends worth keeping they will be happy you showed up and will be understanding of your choices. Be smart about whom you drink with, whom you party with and how much you do it. It really takes a toll on your narcolepsy.

Doctors

            For me this was a huge one, I moved countries to attend school so if something came up I couldn’t do much of anything until I was home for the summer or winter break. My doctor was a gem about it all, sent me with a letter explaining my diagnosis, and also a complete copy of my sleep study. That way if I got into an emergency situation etc I had a copy of my sleep study, a copy of the meds I take and of course a letter to contact my doctor etc.

All these factors are in no way shape or form rules you should follow, they’re just more or less things I found helpful in my college experience. Some things work for people that don't work for others, figure out what is best for you. I had much success despite the struggles I had with narcolepsy. I graduated Photography with a 3.6 GPA and also managed to get a certificate in business management. On top of my academics I was an All American athlete two years in a row. For anyone who doubts being able to finish college, I’m living proof that finding the right combination of everything related to your narcolepsy can leave you having success.

Cheers

Narcolepsy Network Conference Denver

“I love my narcolepsy. It makes me unique and it’s kind of hard to be different in today’s world” Said by a 17 year old guy, and honestly he sounds like the male version of myself when I was his age. It’s been a spectacular weekend full of conversation that uplifted me and verified why I came.

I had forgotten how much chaos there was leading up to my diagnosis and how funny certain moments in my life have been. It’s been a good reminder to continue to laugh at myself, my narcolepsy and this blessed life I am living.

I’ll be completely honest, for how many seminars were going on I managed to get my ass to the bare minimum. I think I sat down for a total of 3 actual guest speaker related seminars. The rest of the time I was off meeting other young people with narcolepsy, exploring Colorado or enjoying a beer with a new found friend. I don’t think I really came to the conference to sit in and listen to people talk about what it is I have. I don’t have that many questions in my current life. I don’t think I was looking for any confirmation that what was happening in my body was happening in others. I just wanted to meet people, relate to them and enjoy conversations about life and where we are headed. I got more than what I expected out of the weekend. I’m walking away with more friends, friends who might experience things before me, talk me through the highs and lows of my future and all around just get it.

So thank you to all of the wonderful people I met, connected with and shared the experience with. Chances are high I’ll be in attendance in Minneapolis next year.

Denver Narcolepsy Network

I went from being extremely busy to being ridiculously busy. I picked up Jinx on Tuesday the 7^th and have had the best 10 days with her. Yes I have to wake up throughout the night to let the little 9 week old bundle of joy go to the bathroom. Yes I have to wake up early to feed her and yes I literally can’t leave her unattended, but no…no I am not annoyed by her or inconvenienced by her. I love that little puppy more than I ever thought I could love something. I am certainly going to miss not seeing her for the next 4 days.

Narcolepsy Network Conference is in Denver, Colorado this year. I managed to find a reasonable flight (Canadian flights are never that cheap) and I saved a few pennies over the past months as it’s something I really wanted to do. I can’t really find a definite reason as to why I want to attend, I’m really not in any dysfunctional time in my life or time of needing support.  Sometimes I almost feel guilty even writing this blog because I know how many people haven’t found the right meds, right job, right friends, and sadly don’t have the same supportive family as I do. I have what I would call a damn near dream life. I have my dream job, my meds work near perfect, my bad days really aren’t that bad, and my friends and family get it to the best of getting it abilities. My major concerns are within financial goals, but I’m only in year one of my business. It’s not like I am unable to afford rent, food, transportation or any of the necessities. A lot of what I read on the support group are people in desperate times, losing jobs, unappreciative doctors, bad combinations of medications, and horrible experiences. I feel awful for each and every one of them because they’re in such a negative place and I was once in that place too… only I experienced those dark times and moments when I was 13-16 years old. I was given the opportunity it figure my narcolepsy out at a much earlier age and at an age where I wasn’t supporting anyone or even myself.

I suppose what I am getting at is I am feeling rather indifferent about this conference. I think it will be amazing and uplifting to meet others with narcolepsy who are older than me, younger than me and especially around the same age as me. I am excited to attend the seminars to learn more about this crazy diagnosis we all seem to be stuck with. I just suppose I am a little worried it might be a negative experience if most of the people have a negative feeling towards their narcolepsy. I am in a good place in my life right now, and I guess this conference is more for me to support others with their narcolepsy than it is for me to get support in my life.

Excited to meet you all!

Cheers

I Bought Myself a Best Friend

I could explode with happiness and excitement. I’ve picked out my Bestest Best Friend and I get to pick her up on Tuesday! She’s a baby boxer, just the cutest little gal you’ve ever seen. I’m a little biased but I will post photo’s of her and I’m 99% sure you won’t be disagreeing.

I’ve always grown up with dogs, boxers to be exact! I love the breed, honestly couldn’t imagine a life without them and now I don’t have to. We currently have Puma, she turns 8 years old in a few weeks. She’s a complete gem and I love her to death. That being said she is clearly my Mamas dog. Rightly so because as a puppy my Mama did all the work with her and I just played with her! This new puppy will be mine to work with, which excites me. It give me a dog to work with in agility, a dog to call my own, take me out for walks and climb into bed with me for nights of Netflix. I’m ready for the long nights of kennel training, the early mornings to feed and walk and the amount of PICTURES I get to take. Seriously this is every photographers dream. Haha. If people thought I took a lot of pictures of Puma, they should be concerned for my new puppies future in front of the camera. ;)

Anyways, I’m off to go visit her out at the farm…

Meet Jinx.