#HAWMC Day 10 – Dear 16-year-old-me

Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?


Holy shit you guys I am so excited about this one. I have literally had this as a prompt for my blog for MONTHS and just haven’t gotten a chance to do it. Ok So here we go. Its going to be a long one, with an abundance of typos, I’m sure.

Dear 16-year-old-me:
Hey. How’s it going? I bet AP English like totally bites right now. I also wonder what you’re doing to pass the time in class considering you don’t have texting on your phone yet. What’s texting? Oh you have no clue what you’re in for little lady. Before I explain your life 11 years in the future I want to get some things out of the way. Your boyfriend. I know he’s seriously perfect right now, and he was, but please stop planning your kids’ names with him. Spoiler Alert: You’re not going to marry him, and in fact hes going to destroy your heart when he cheats on you after you get diagnosed with Multiple Sclerosis.

Oh yea. There is that.

You’re going to get diagnosed with MS, and since the doctor won’t tell you this, you won’t die from it. It’s really scary because I know right now you’ve never been sick or been in a hospital. But you power through, and life gets awesome again. So some good news is that before MS, you get to live in Austria and that is the best fucking time of your life. (Also you should stop swearing now, because we have a serious potty mouth problem.) You’ll think about selling your car, quitting school, and whatever else it takes to stay there because it feels like your life is finally whole for the first time ever. Austria is going to change your life and you’re going to meet the best friends you’ve ever had thus far. This is going to open your mind to the world, and you’ll come back a changed woman. I know, I said woman, you’re a woman now. Holy fuck, you grew up.

So you go to college, you meet some cool people, you graduate, you get a job. You break up with that stupid fuck you dated for 8 years (seriously, think about ending this relationship earlier). Also you buy a house, you have 2 sickeningly adorable dogs, and you life gets kinda awesome. You’re proud of who you are. And well teenage Jackie, this is where shit kinda hits the fan. I don’t even know how to tell someone this, because I wouldn’t believe if if I were you. But you know how sometimes you have issues with pooping? I know, you’re super embarrassed about this right now. You haven’t told a soul, but you should really think about getting to a doctor about it. Well, those issues turn into really big issues. While your MS is controlled and you think you got out lucky, you get diagnosed with Ulcerative Colitis. At 16, you’ve never even heard of this, I know. Don’t google it, you’re just going to get scared. Well you have UC now, and you’re going to experience some of the most horrible years of your life. I won’t go into detail about it because there isn’t a way to prepare for your life after this. But at one point you’re going to realize you have to have surgeries to remove your large intestine which is also your colon (I’m sure you don’t know these are the same thing). Also during this time, you’re going to have an ostomy. Don’t google it. You don’t know what this is, or that things like this exist in life, but you won’t be able to poop out of your butt anymore. Your small intestine is going to hook up to your stomach and you’ll be pooping into a bag that hangs outside of your body. Go ahead and have a good cry about that, but don’t cry too much, because you cry enough when its happening to you. But here is the beautiful part about this, it saves your life. You come very close to dying…multiple times. I’m serious, Jackie, you stop breathing in surgeries, your insides are trying to kill you, and your heart almost stops. I know you think it won’t get any worse, but then all of this starts to weigh on you. In May of 2011, doctors try to admit you to a hospital because you want to kill yourself. You don’t, obviously because I’m breaking the space time continuum by writing this letter to you. But after all of that crap happens, you have what is called a take down, and you get your jpouch. I know, tons of terms you don’t know. Here’s the cliffs notes (I’m sure you’re familiar with those), you get to poop out of your butt again. Its like some amazing bionic medical science shit. You look, feel, and act “normal”, whatever that means.

So now is when I start telling you about how all of this made you a super awesome grown up. Before we get started, you’re close to 30 right now and you’re freaking out about it… a little. The plans you had for marriage and babies have gone out the window, but this is a good thing. Trust me, I’ve learned babies are a lot of work. The first thing I want to tell you is that it turns out your family is totally fucking boss. (You say boss and bitchin’ now, its a throw back. It makes you sound cool). Seriously I know you fight with your parents a ton now, and all you want to do is get out of there and live your life. I know, I remember what it was like. But when you get sick you realize how amazing your family is and how they support you in a way that you’ll never be able to repay. I can’t tell you how cool they are, or how much you love them and appreciate them and actually like hanging out with them. No shit. Also your sister is your best friend in life. She sits by your hospital bed for hours on end and you guys find common ground and bond and she’s so fantastic there aren’t words to explain how vital she is in your life. But she will never pick up her damn cell phone or answer a text so that will annoy you. Also you cry like a bitch all the time now. Right now I’m crying writing this letter and man its super annoying. Your damn hormones start to kick in and you finally feel like a girl. It blows.

So aside from your super rad family, you do this thing called blogging. Its kinda like LiveJournal (by the way, grow up and stop writing in that damn thing. I know you think people don’t know you’re talking about them but they do and you’re being a bitch), but different. You started to blog when you got MS, and then you also started a blog when you got UC and its kind of a big deal. We rarely brag or boast, but this blog is pretty sweet, and get this, people actually read it. We set new daily highs for readers monthly, people ask us to do product reviews, and to talk on panels about our health condition. I have laid out some really cool shit for you. This blog has become your lifeline to the world, you LOVE blogging and writing even though you’re not great at it. Oh you got nominated for an award, that was cool. Basically you’re going to get super comfortable talking about your butt disease, and then its going to be all you talk about. You’re going to advocate the shit out of this. Its your life’s passion. Seriously, I know it sounds crazy.
You are also a counselor at a summer camp for kids with your disease (I KNOW! We finally get to be a camp counselor!). Just like Austria, this changes your life. Jackie you need camp. It makes you a better person and you meet some of the most badass people on the planet. These people are the strongest, funniest, most amazing people you’ll ever know and they are like your instant best friends. Not like your friends now, most of them turn out to suck. Through camp and your blog you create a network of people who you may have never met, but are your best friends. You feel fulfilled by your blog and your friends and like you’re doing something productive with your life.

Now you’re in grad school, and you’re realizing that you have professional talents that people want. People want to hire you and need your help. Woman, you make shit happen. Be proud of the woman you’ll become, because right now, I think I’m pretty awesome. And that means that you’re pretty awesome. I have so much more to tell you, so much I wish I could help you out with, but the reality is we wouldn’t turn into me if I could do that. Jackie you have a hard life, and sometimes it flat out sucks ass. But a lot of the time, its really fucking awesome and it is because you’ve made it that way. So instead of ruining the hidden treasures that you’ll find along the way I’ll just leave you with this. You grow up. You are devoted to your independence to a fault. You really love your family and the life you’ve created. Life keeps throwing stuff at you, and its hard, but you’ve developed really great coping techniques. Also get this, even though we’re getting old, for the first time ever, you think you’re pretty. Colitis did that to me, and I am thankful for UC everyday and the person it has turned me into (so you should be too).

Oh you stop being a musical snob and start listening to rap. Start perfecting your dance moves now. Also buy stock in Apple asap.

Hearts,

27-year-old Jackie

 

Please leave a comment

  1. Cristina Says:

    I am sitting at my computer in a classroom of teenagers bawling my eyes out. I hope they don’t notice but then again I don’t care. BTW-I always thought you were pretty! You are an absolutely amazing woman and inspiration and don’t ever forget that!

  2. Kara Says:

    LOVE this.

  3. Erin Louise Says:

    Oh my tears!! This is awesome, Jack!! You are an amazing woman, friend, confidant and you’re kind of funny ;) I’m so lucky to have a lady like you in my life. I lurve you and your dogs a whole hell of a lot.

  4. mark Says:

    yes my eyes waterd up too. Brings back memories of the peak of my uc when i had no more weight to loose. 135 pounds at 6’3″.

  5. karenrap Says:

    Love it!

  6. Ann Says:

    Girl, you are amazingly awesome!! It’s Mother’s Day and I woke up worrying about my 13 year old son who has Crohn’s and a couple other related problems. Seriously, I woke up with worried thoughts running through my mind. I’ve been reading Ann Voskamp’s “1000 Blessings” and trying to find something about his Crohn’s to be thankful for and just can’t seem to do it. (He was diagnosed in ’09… takes me a while, huh!?) Anyway, reading this I felt this huge load just lift right off my shoulders. So, even if only for a little while cause it’s two steps forward one step back for me usually, thanks for the hope that my little guy will be ok too.

  7. Suzanne Says:

    Great site, Jackie. I’ve enjoyed reading your journey with IBD. I’m a 54 year old woman from Michigan who has put up a fight for…well, a long time. I was diagnosed with UC when I was 28 (probably had IBD LONG before that), had surgery at 33, developed fistulas, had surgery again at the Cleveland Clinic at 37, lived and suffered much as you did, then had my 13th surgery last March when I was really diagnosed with Crohn’s. (and I thought having my colon removed would cure IBD!) So, my point is that I’ve lived most of my 54 years with a J-pouch. I’ve suffered all the embarrassment and anxieties that you talk about. There are days when I feel sorry for myself and ask the “why me?” question, but for the most part, I’m lucky to have lived in this day and age because at any other time in history i might be dead from this disease. Keep up the fight. Oh, and to add to the mix, my 25-year-old daughterr was diagnosed with UC last year..now we have a common bond…not one I would like to share with her, but hey…

  8. Jackie Says:

    Suzanne, how long have you had your jpouch? The oldest jpouch I’ve met was 26 years! I’m always looking for seasoned jpouches because I have a fear of them failing. It seems like most people have had theirs 10 or less and I’m afraid in 10 years we’re all going to have failed jpouches! Thank you so much for reading!

  9. Jackie Says:

    From the friends that I have who were sick kids, most of them say that it made them grow up fast, but that they were happy they had it. Being chronically ill changes you, and if you have a good head on your shoulders, it changes you for the better. Sometimes I think that UC didn’t make me sick, but it really made me better…a better person.

    Your son will be ok. The only advice that I can give, learning from the kids at camp, is just make sure hes not becoming social anxious or retracting himself when hes sick. A lot of our camp kids have social anxiety or don’t know how to make friends because they are never in school.

    Also….I hope your kids goes to camp…its such an AMAZING place. I have talked about it on this blog before.

  10. Suzanne Says:

    Jackie, I had my first surgery for the J-pouch in 1991. Then, had to have the whole thing redone in 1995 because I developed fistulas. At the time of diagnosis in 1989, they thought I had ulcerative colitis and that if I had my colon removed I would be cured! However, it turns out I truly had Crohn’s and wasn’t properly treated all these years (was just diagnosed last year with Crohn’s following my 13th surgery). I’ve developed a stricture (narrowing in the small intestine) probably due to scar tissue from many years of flare ups and I’m at a risk of losing my pouch. But, I’m going to fight to keep it as long as I can. I’m now using Humira to treat the Crohn’s and we’re hoping it will help me keep my pouch. I read your post about Boyfriend, and you should know I’ve been married 29 years and my husband has loved me, supported me, been at my hospital bed, doctor’s appointments, and truly suffered with me. He think I’m gorgeous and sexy even through I’ve had two ileostomies and 13 surgeries. He’s seen me at my worst and my scars don’t bother him. So, love is possible even when you’re a sickie with IBD!

  11. Rach Says:

    Jackie. This rocked. I was diagnosed 7 yrs ago, and I am also 27. I did this exercise for myself and balled my effin eye balls out. I am also involved in CCFA and it breaks my heart to see other ppl with the disease. It makes me feel better to know other crohnites as you guys are the only ones who “understand”. Much love and kudos for this ridiculously awesome post. You’ve made my life better for it. :)

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