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Your Mom – A Get To Know You Game

Loch,

I plan for you to love me. Respect me. Be annoyed by me. Appreciate me. Wish I’d leave you alone for a while. The whole gambit. But should things take a turn I didn’t expect, I still want you to know me. To know I loved you. To know who I was, warts and all. People that are gone have a tendency to be remembered as saints, and that’s a lot to live up to. I’ll tell you right now, I’m no saint. I’m nice. I’m loving. I’m friendly. I’m loyal. But I’m also a bit vain, slightly over analytical, have limited patience, am a worrier and a panicker and do all together too much swearing. The truth of the matter is, there is no way I can possibly let you know everything about myself from my posts alone, so I thought I’d supplement the process by doing a number of ‘Get To Know You’ questionnaires and sprinkling them throughout the blog. My personal fav, the Proust Questionnaire (often seen in the back of Vanity Fair), will be among them.

The most important thing for you to know about me is that I love you. You are the joy of my life. You are the best thing I ever did. Truly. 

Now writing this feels a little self-important (and long) but, should I not be around later, these might be nice things to know. These 50 questions are from sparkpeople.com and will hopefully give you insight into the little nuances that make up your mother.

1. WERE YOU NAMED AFTER ANYONE? No. But I do have the same name as Granny’s cousin Leigh, and almost had the same name as Granny’s cousin Brooke. Not sure why we stuck with family names, but there you go. I also know that Granny deliberately chose a name that “couldn’t be shortened” and then spent a good part of my childhood lengthening my name to things like, Leigh-dee, Leigh-dee-pa-dee-dee or Leigh-ski. My name meant continually telling people my name was not in fact short for Emily or Lesley or anything else, and the spelling has lead to a life of telling people my name is pronounced Lee and not Lay. When we named you, we seriously considered going with Locklan so everyone would always be able to phonically sound out your name, but between my name and half the people who call your Dad “Seen”, we figured if people wanted to mispronounce your name and call you Lowch-lan, let em. When it really came down to it, I can’t guarantee that continually correcting people – in front of everyone on the first day of class, say – didn’t somehow make me a bolder person. And bold ain’t bad.

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2. WHEN WAS THE LAST TIME YOU CRIED?   I most recently cried in frustration at my continued need to ask for money from Granddad, and the subsequent shame I feel having to justify my life choices every time I do. Your grandparents are incredibly generous and without them we’d be screwed. Mostly it’s about me being sick. They pay for most of my medical bills, for my acupuncture and monitored exercise, and for the extra classes I put you in. They also help out when we get into a bind like when my old car died in the drive thru of McDonalds. Humiliating for your father ,who had to push the car out of the way. Fascinating for you, who watched the whole thing go down, and discouraging for me, who knew that I’d have to make a phone call to ask for money for the repairs. The thing is baby, we’re artists, and we don’t yet make the kind of money that we’d like. Our life is a struggle, and money, or the lack there of, is probably our biggest source of pain and discord. It’s pretty much the only thing Dad and I fight about. But it’s a heafty thing. I want you to be able to come to us for help if you need it (God knows I hope our financial future finds us in the position to help), but I would also steer you towards making your own money. Do what you love, just know you have to hustle and work. The bohemian life is only charming to a point. And asking your parents for money when you have your own kids…Sucks.

3. DO YOU LIKE YOUR HANDWRITING? I like my printing – and I do a mean bubble letter for signs – but I can’t do cursive and I’m pretty sure a handwriting person would have a field day with me, as my writing changes from day to day. It’s always one of 3 styles but they aren’t even remotely similar. It depends on my mood/fatigue, time constraints, and the necessity for legibility. But occasionally my handwriting will change right in the middle of a letter. Very weird.

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4. WHAT IS YOUR FAVORITE LUNCH MEAT? I’m not really a lunch meat girl. I like salad sandwiches – tuna, egg, chicken, salmon – I like grilled cheese. I like the chicken sandwiches Granny makes with hunks of chicken and lettuce on white bread with lots of mayo, and I love PB&J – smooth not chunky – But deli meat? Not so much.

5. DO YOU HAVE KIDS? Sure do. Best kid ever.

6. IF YOU WERE ANOTHER PERSON WOULD YOU BE FRIENDS WITH YOU? Yes. I’m a good friend. A devoted friend. Plus, I’m usually the person that says something when others are too embarrassed and that often helps out.

7. DO YOU USE SARCASM ALOT? I do. I like sarcasm. I know people think it’s a snarky form of humor but a well placed sarcastic comment can bring a room down. I just try not to be cranky about it.

8. DO YOU STILL HAVE YOUR TONSILS? Yes. And my appendix. And my wisdom teeth. They never came down so I’m sure they’re still there…somewhere in my face.

9. WOULD YOU BUNGEE JUMP? Never. And I have to tell you babe, I’d advise against it for you too. Research is now showing that it can result in permanent internal organ damage. If you must get some mad thrills, I’d prefer you went sky diving. Your dad loved it and wants desperately to go again. Personally, I’d rather you both passed. But I’m making a solid effort to not be ‘that girl’.

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10. WHAT IS YOUR FAVORITE CEREAL? Oh cereal! I love me some cereal. I eat cereal almost every single morning. Favorite ever would probably be Corn Pops (the Canadian kind, not the American kind) or Post Raisen Bran (not Kellogs) or Frosted Mini Wheats. Though lately I’ve been doing a lot of Cheerios and Granola. That’s the thing about cereal, you can switch it up with your mood. When I was little Fruit Loops were my favorite, but I only ever got them with Grand Mimi, or on our cottage’s opening weekend, when you got that variety pack of small boxes and they were included. When I became a college student living on my own, I remember buying a big box of Fruit Loops just because I could. To this day though, I can’t really eat them for breakfast. There more of a late night snack kinda thing.

11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF? No. I slip out of all of my shoes…and then I leave them everywhere. It’s a bad habit I share with you and your father. Our house is like an obstacle course of shoes.

12. DO YOU THINK YOU ARE STRONG? Physically. I used to be. Now, not so much. Emotionally, probably not. I’m pretty sensitive. Spritually, yes. I go through every day doing what I need to to survive and be happy. I just keep trying.

13. WHAT IS YOUR FAVORITE ICE CREAM? Haagen Dazs Chocolate and Peanut Butter. Which is weird because I’m not a chocolate and peanut butter type of girl. I don’t even like Reeses Peanut Butter cups. But this ice cream is ridiculous. I generally eat it right out of the carton, and when I lived alone in NYC I had to actually stop myself from buying it because I could eat an entire pint in one day. I’d stand in the kitchen and tell myself I’d stop when the ice cream was flat (meaning I’d evened it out on all sides) but then I’d get a PB swirl and it would go into the next layer and then I’d have to flatten that one out…It was like OCD eating. A close second would be homemade peach ice cream at the cottage.

14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE? Their clothes. It’s an easy one to see and make a call on from afar. And then the face. If I like it or not. Kind or not kind. Sour or sweet. Attractive or not…

15. RED OR PINK? Red. Pink and I were never close.

16. WHAT IS THE LEAST FAVORITE THING ABOUT YOURSELF? I have very limited patience and my skin is problematic.

Making Grand Mimi laugh. You'd also just stolen her sandwich.

17. WHO DO YOU MISS THE MOST? Grand Mimi. Shows you what a blessed life I’ve had that the person that I miss most lived to 97. I don’t want to be your answer to this question.

18. WHATS YOUR PET PEEVE? Inefficient/Cryptic voice mail messages. “Hi, it’s Blank. I need to ask you something. Call me back.” Then you call back and inevitably get a machine and have to say, “Hi, it’s me. You needed to ask me something? What’s up? Call me back.” What a waste of time. If you’re leaving a message say what you need, give me the details and when I call you back I can give you the information whether I get you or not, and the productivity of the situation moves along.* Better yet, send an email.

19. WHAT COLOR SHOES ARE YOU WEARING? Very old, beaten up cream cowboy boots. But really my answer should be no shoes because when I get home the first thing I do is take off my shoes – and then change into sweats (sorry Sean).

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20. WHAT WAS THE LAST THING YOU ATE? A chocolate from Sees Candy. I’ve recently become that woman who eats chocolates. Like bon bon chocolates. I’m a horrible cliche. But I’m hooked. You went trick-or-treating this year and I didn’t want any of your candy. All I could think of was a dark chocolate scotch mallow or a milk chocolate vanilla cream from Sees. I may be a cliche but at least I’ve got good taste.

21. WHAT ARE YOU LISTENING TO RIGHT NOW? I’m loving the new tune “We are Young” by Fun featuring Janelle Maonae. It makes me so happy. It reminds me of my youth. It makes me think of your future. It’s such a positive, cool tune.

22. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE? Really? A crayon? I don’t want to be a crayon. Next!

23. FAVORITE SMELLS? Sunscreen (coconuts), pine trees and bacon (cottage smells), Cool Water colone (reminds me of my youth), the ocean and home made roast beef dinner and chocolate chip cookies.

24. WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE? Sean. He called from the garage to ask me a question about something I’d said was wrong with the computer. Real phone call? The president of your co-op to discuss yet another thing regarding the silent auction for your fundraiser. People, like me, that willingly go into these kinds of volunteer jobs are slightly crazy. Fundraising is no joke. It can wipe you out.

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25. MOUNTAIN HIDEAWAY OR BEACH HOUSE? Beach house. I can’t really do altitudes with PH. But I think I’d still choose the beach house. I love the ocean. Not so much swimming in it. I prefer a pool. Or eating on it. I’m not crazy for sand. But if we had endless money I would have a beach house. I feel calm by the water. Heck, if we had endless money I’d probably want a mountain place too. You were so into learning to ski at Big Bear this winter. I’d love to give you more opportunities to do it.

26. FAVORITE SPORTS TO WATCH?     Live – Hockey. TV – none. I find sports on TV mind numbing.

27. HAIR COLOR? Auburn or gold. I color it trying to recapture the hair of my youth. I used to say the color was “toasted eggo”. I thought it was an accurate description and far more true than blond.

28. EYE COLOR? Blue. Though they change colors with what I’m wearing. So they can also be green or grey.

29. DO YOU WEAR CONTACTS? Nix. Great vision.

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30. FAVORITE FOOD? This is tough. I LOVE food. It’s been a problem since I got sick because I used to work out all the time and eat pretty much whatever I wanted. Now, not so much. Those chocolates I mentioned are a real issue. Sick is one thing. Sick and fat, is totally another. I’m trying to keep it in check, but I’d say…cheese, bread, roast beef with pan roasted potatoes and carrots or mac & cheese made by Granny. Lemon or Yellow cake from a box. Superb sushi. Great pasta (no alfredo sauce) or a hamburger and fries. Oh hell, fries in general.

31. SCARY MOVIES OR HAPPY ENDINGS? Happy Endings. I don’t like to be scared. I watched the Exorcist when I was 11 and I never got over it. Scarred for life.

32. LAST MOVIE YOU WATCHED? 21 Jump Street. They did a great job. Super funny and totally what I wanted it to be.

33. WHAT COLOR SHIRT ARE YOU WEARING? Grey. You can pretty much assume I’m wearing white, grey, black or army green. My friend Keili once described my style as urban safari. I think that’s pretty accurate.

34. SUMMER OR WINTER? Summer!!! I love summer. Maybe it’s a, “it’s my birthday” thing, but I love everything about it. The heat, the long days, the fact that I get to drink on patios and go to the cottage. Even though I’ve lived in LA for 9 years where it’s pretty much always summer, I still get excited when the 24th of May rolls around – Memorial Day to my US crew and May 2-4 to my North of the Border peeps – and I know that soon I can stick my hand out the car window and feel the warm air on my skin. I love that.

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35. HUGS OR KISSES? I guess hugs. You can get a lot from a hug and you can get them from more people. I remember I’d been in NY for about 2 months after moving there and someone at my school gave me a hug, and I started to cry. I had no boyfriend and hadn’t seen my parents or friends in a while, and I realized that it’d been a really long time since I’d been hugged. Human contact is very important to happiness. I personally can’t stop hugging and kissing you.

36. FAVORITE DESSERT? In general – cookies. Always cookies over cake or pie. In a restaurant – I’d probably go warm chocolate cake, though I’ve been known to branch out. Desserts are a great place to take a risk.

37. STRENGTH TRAINING OR CARDIO? I’m a pilates girl now. But even when I went to the gym all the time, cardio was my least favorite. And yoga and I have never seen eye to eye.

38. COMPUTER OR TELEVISION? How could I choose? Couldn’t live without? Computer. Like the best? Television. Or lately, television on my computer. Best of both worlds.

39. WHAT BOOK ARE YOU READING NOW? Just finished rereading The Hunger Games on my iPad. I’m blow-out -nerd-excited about the movie. I guess next I should finally start the 4th book in the Game of Thrones series. I loved the first 3. Don’t know what’s stopping me from starting number 4.

40. WHAT IS ON YOUR MOUSE PAD? My mouse pad? No mouse pad Mr. Outdated Questionnaire.

42. FAVORITE SOUND? Your laugh. Rain on the roof of the cottage.

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43. ROLLING STONES OR BEATLES? Beatles. Though I’d take the Beach Boys over either of them.

44. WHAT IS THE FARTHEST YOU HAVE BEEN FROM HOME? I guess Bali.

45. DO YOU HAVE A SPECIAL TALENT? I’m super fast at figuring out vanity plates on cars.

46. WHERE WERE YOU BORN? Wellsley Hospital, Toronto, ON Canada.

47. WHERE ARE YOU LIVING NOW? In a lovely little house in Studio City, CA.

48. WHAT COLOR IS YOUR HOUSE? Dirty white. But since it’s a rental, we’re hesitant about putting any more of our money into beautification.

49. WHAT COLOR IS YOUR CAR? Black 2012 Ford Explorer. I love it. I’ve wanted a black truck since I first started driving. I finally got one this year and I’m so thrilled. (See: Anticipation). You named it Schatzy. It’s totally stuck.

50. DO YOU LIKE ANSWERING 50 QUESTIONS? Actually it was pretty cool. Self knowledge is a good thing.

I love you baby. Get to know yourself and embrace all you are. I’m so very proud of you.

xoxo your mommy

The Family McGowan in our Loch's 4 Birthday Shirts that your Dad designed. I'm pretty sure you'll outgrow wanting to match with your parents, but for now we're embracing it!

*only time this doesn’t work is for very personal information not to be left on answering machines. Deaths, Births, Engagements. Otherwise just tell me what you need!

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Sex

Dear Loch,

I’ve recently become obsessed with a television series called Friday Night Lights. I’m a little late to the party as the entire series has already aired, pilot to finale, but I don’t think it makes a difference. It’s an incredibly engaging show with compelling acting and directing, with a camera style that lends an authenticity to the show that makes you feel like you’re really in the room with these people. I was particularly taken with a recent episode called “I think we should have sex” in which the 15 year old daughter of the main characters plans to have sex with her boyfriend and her mother finds out. Connie Britton’s performance is nothing short of amazing.  She is truly shaken by the idea that her daughter is thinking of this and she expresses her feelings with equal parts grace and fury. Though I think it’s different if you have a son rather than a daughter, in no short part to the double standard known to all, it’s still something I’ve found myself thinking a lot about since I saw that episode. Where do I stand on this? What’s my take?

Baby, I realize you’re 4, but they’ll come a day when you’re not, and all too soon this will become a thing, and it’s a thing worth talking about.

First of all let me say I honestly debated not writing on this subject because…well, gross. These pieces of advice are supposed to come in small doses in casual conversation, where you can nod and leave the room immediately after so no one feels uncomfortable. I want you to be able to come to me with any question, have me answer clearly and susintly without judgement, and allow you to go on your way with both the facts, and very limited awkwardness. I also don’t want you to think I’m promoting sex, because I’m not. It’s a big deal and something that shouldn’t be taken lightly. But the truth of the matter is, eventually you’re going to do it, and whether you’re in high school or college or beyond, I think young people get into the most trouble when no one talks about it. If you feel you’re ready (and quite frankly you’re over 16 – because before that, I’m sorry you’re just too damn young) then I want you to be prepared.

The thing is, have no problem talking about sex, but I know that talking to your parents about sex is pretty hideous, no matter how cool the parent. So, I’ll give you the rundown as I know it, and try to keep my personal antidotes to a bare minimum. You should never be embarrassed about sex. It’s not an embarrassing thing. It is, however, a private thing. A personal thing. A not-for-mass-consumption thing.

Ok, so, before you start doing it with other people (preferably one-on-one) you will do it alone. That’s good. It’s an important step. It’s totally normal and everyone does it. You can just tell us one day that you think you need a lock on your door and we’ll get it. No one wants that moment of discovery.

But when it really comes down to it, don’t rush into anything. Not just because adding sex to your life stops your childhood in it’s tracks, but because there are lots of other things you can do before you burden yourself with that responsibility. Don’t feel the need to speed things along or rush to an imaginary finish line. Kissing rocks. When I was a teenager I could literally kiss for hours. I miss that. Really, truly, miss it. The make out years are the best. And once you’re past kissing, there are still tons to things to do before sex. Back in the day we used to say “Everything but…” I remember Granny asking me once what that meant. I was like, “Uh, everything but…pause for her to get it, she didn’t…sigh, Sex. Everything but sex.”  Because once you’ve had sex, it’s always on the table, and you tend to rush right to it and forget about all the other awesome things you did before it was in the game. And I’m not talking about awesome things like playing sports and hanging with your friends. I’m talking about sexual things you do with a partner. I’m just saying, master one set of skills before moving to another. Trust me, women your whole life will thank you.

That’s the thing babe, for the most part, life is long. There will be plenty of time to explore. Plenty of opportunities. Don’t feel like, “I gotta just do it now. I might not get another chance.” There’ll always be another chance, and if you can wait till you’re really in love for sex, then wait. Your dad had sex for the first time at 16 with his long term girlfriend. I was 19 and with my first real boyfriend in University. Had I made different decisions with the boys I talked about in Regrets, I might have been in High School too. But the point is, we were both in relationships. Committed, long term relationships and that’s what I’d advise for you.

Listen, you can have great sex with someone you feel nothing for – mostly because you’re uninhibited and don’t really care what they think – but it doesn’t feel so great after. Try and find someone you really like and trust, so you aren’t self conscious and you want to hang out with them the next day. I’m not saying never have a one night stand or hook up with someone just for fun.  I’m just saying don’t make it a habit. It’s like junk food. Great in moderation but mostly you want to fill your life with healthy stuff that really feeds you.

As you edge your way into sex or sexual situations and experiences, here are some things I want you to know:

First and foremost, if you are having sex, you are using protection. Period. And that protection must be condoms. Unless they have created something that surpasses condoms in ability to prevent the spread of disease and avoid unwanted pregnancies by the time you’re dealing with this, you will be using condoms. Not sometimes. All. The. Time. It is your responsibility. You are in charge. When you’re in a relationship and you know that you’re both monogamous and disease free, then other forms of birth control can be considered appropriate. But NEVER, NEVER just forget. Never. I can’t stress this enough. Sex can be a lot of fun. But it comes with responsibility, and if you screw that up it goes from a good time to a bad time really fast.

I want you to know that porn girls are not real girls. They are naked actresses who are bleached and pumped and waxed within an inch of their lives. Don’t expect real girls to look or behave like that. I think girls today feel the need to perform much more to keep up appearances. Trust me, real sex can be awesome but it can also be pretty funny and sometimes pretty messy. Respect the real girl you’re with. Don’t make her feel she has to be a tanned, gumby doll to please you.

Threesomes are overrated. I’m not saying don’t do one. I’m just saying they aren’t customary. They’re a sexual blip that somehow has become mainstream. When did one partner become banal? Why are we fixated on making it wilder? Different? Crazier? Plain old sex can be plenty steamy. You don’t need to add another person to make it better. Sometimes it just makes it confusing.

Don’t keep anything you tape. All must be deleted. I promise this is excellent advice.

There will come a time when you stop sharing every detail with your friends. That’s normal. It usually coincides with your first real relationship. But until that point, talk about it if you can. That’s how you learn – by combining your, minimal, experiences. I’m not sure if guys talk like girls, but I am very grateful to my friends for all their insight. I never went into any sexual situation blind. I was taught how to do almost everything by my more experienced friends so I never felt like I was floundering. Just be sure not to brag or say anything that might embarrass your partner. Talk, just be classy about it.

Before you add a partner to the mix you might want to consider what used to be called maintenance, and is now referred to as “manscaping”. Take the time to clean up the business. I’m not talking about waxing or anything extreme, I’m just saying, keep everything neat and clean.

Speaking from the other side of the coin I can tell you this. Stay in shape. Cardio, strength, agility and general esthetics all help in this department. Be careful with stubble. It’s sharp and it hurts. Don’t be the guy with too much saliva. Keep your tongue in your mouth until you get to the lips. I remember kissing a very handsome boy in high school who literally had his tongue out of his mouth 2 feet before he got to me. It was all I could do not to lean away. Focus on other areas of the body rather than just the obvious. It’s annoying to have someone come at you with just one thing in mind. It’s going to happen. Don’t be desperate about it. Also, don’t hesitate. It’s a little like driving. If you’re going to change lanes, change lanes. If you’re going to kiss her, kiss her. Pay attention, so you can tell what’s working and take her cues, but don’t waffle or second guess yourself. Make your moves with deliberation. And don’t hook up with someone if you really want their friend. It’s mean and it makes people feel used.

Finally, be open to learning. To having someone teach you the ropes. Really pay attention. A guy I once knew told me he’d dated an older woman who’d taught him everything, and felt she done him a major favor. Whether it’s an older woman, or an open and vocal girlfriend, bother to learn. Be the guy who knows what he’s doing. I’m not understating it to say that guy is remembered long past the others.

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Wash your sheets. Make your bed (it’s more appealing to get in to whether you’re alone or with someone else). Be clean. Use hand towels not kleenex. Get to know your own body so it doesn’t betray or embarrass you. Buy good underwear. And for God sake, have fun. Enjoy your youth. Respect your partners and stay healthy and child free.

I’m not ready to be a granny just yet.

xo your mom

Some Days are Better than Others

On days like this I’m reminded of the old U2 song “Some Days Are Better Than Others”.

Everyone has bad days. Days you feel you should just go back to bed because karma’s just not on your side. I’ve had days like that in spades. One day last year I swear that Loch single handedly destroyed my house in the first hour he was awake. He tripped and threw juice all over the room. He wildly danced/kicked the tinker toy sculpture I’d made – to encourage him to play with something other than cars – shattering most of the pieces. He’d pulled the towel rack off the wall and dropped his strawberries all over the carpet I’d just finished cleaning, all with Caillou’s exceptionally irritating voice whining in the background. I was beside myself. You look around as if to say “Is anyone seeing this but me?” realizing that this isn’t an episode of punked, but your life, and it’s on you to just suck it up and clean the carpet again. Another day I woke up to find my car broken into and my XM radio stolen. Less than a half an hour later the CD player in my car – which I’m now using- breaks and eats my CD, and when I try to get the CD out – to stop the hideous crunching noises – I rip my pants. Those days are annoying. Those days make you groan. But today’s different.* Today’s a sick day. And the problem is, when I don’t feel well I get discouraged, and then my symptoms are exacerbated by my melancholy. I don’t want to interact with people. I don’t want to snap out of it or be positive, I just want to watch TV.

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When I was first diagnosed I watched a lot of TV. I didn’t want to think. I didn’t want to deal. I wanted to pretend it wasn’t happening. I’m still like that a bit. I don’t do support groups. I don’t often try to reach out and connect with others who have my disease. Sometimes, when I do talk to people who are sick, I see a kindred spirit and I know I’m not alone. But, for the most part, I want nothing to do with sickness – my own or others. I want to be around healthy people. It helps me pretend I’m healthy. And for the most part, I find that works for me. There are also some times that my being sick can be helpful to others, and for that I feel grateful. My dear friend Shannon was diagnosed with Breast Cancer last year. She fought with grace and beauty and took all it threw at her – from chemo, to the port in her chest, to the loss of her hair and toenails – with her head high and her two little boys smiling the whole time. She was magnificent. So much so that Sunnybrooke Hospital in Toronto asked her to be the “face” of the disease. She was everything you’d hope to be in that situation. Strong, confident, positive and, even bald, gorgeous. That being said, it was also incredibly hard on her, and we spoke a lot as I was one of the only people that could truly understand staring your own death in the face and saying, “No. Not today. Not me.”

My darling friend Shannon. The most beautiful cancer patient ever. All strength that girl.

One thing we really bonded over was that we weren’t brave. People always tell you how brave you are but really, what’s the alternative? Lying down on the floor and giving up? It’s not brave. It’s just living. Putting one foot in front of the other and continuing to live.** It’s scary and infuriating. It makes you so mad at the unfairness of it all. Why you? Why this? Shannon, like myself, had lead a pretty squeaky clean life. We liked our cocktails, but other than that we were super healthy, non-smoking, gym-going, drug-free ladies in our early 30’s. How were we the one’s getting sick? When I was first diagnosed they asked me a bunch of questions. Did I smoke? No. Did I use diet drugs? Never. Did I do cocaine? I’m one of the only people I know that never tried it. Of that last one I’m very glad. If I had, I’d always be wondering if I gave this disease to myself. If I was to blame. But I’m not. No more than Shannon was to blame for her Cancer.

I was glad I could be a sounding board for my friend who was battling similar demons. Someone she could talk to when she was feeling like “What the *&%$?”. And in some ways, I envied her. I envied that she had a course of action to follow to potentially rid her body of her sickness. She fought that disease with all she had and she’s come out the other side cancer free. Thank God. I know it could come back, but for now, she’s just Shannon again. Probably even a better version. A wiser, more aware soul. I wouldn’t wish that kind of clarity on anyone, but I know it’s the one good thing about getting sick. Your perspective shifts and you can never go back.

There is no other side to come out of with PH yet, and on days like this, I feel so sad. I just finally admitted to myself that I should be using oxygen therapy at night. To be honest, I should probably be using it all the time, but I can’t get my head around having those tubes on my face on a daily basis. I know people do it every day, and I’m sure they hate it too, but I’m not ready. I want to stay looking well, even if I’m not necessarily feeling that way, for as long as I can. I should have probably started oxygen therapy over a year ago. I sleep poorly. I often wake up with headaches. I’m exhausted. It’s like I’m hung over all the time, and I’ve finally admitted I could be doing serious damage to my organs forcing them to function this way. I know it’s vain. I know it’s shallow. But I also know myself, and I can foresee how this kind of change will affect my personality and self perception, and it’s not good. I don’t want people to see a sick person when they see me. I don’t want to have to see a sick person myself when I look in the mirror.

nhlbi.nih.gov

So much of my positive attitude stems from not appearing to be ill. From keeping me “me” at least in pretense. I know looks aren’t everything but, like it or not, the world is kinder to attractive people and I’m not yet willing to give that up. I’m still young. I’m still active. I know myself enough that, should I have to wear a tube on my face all day, it’ll change the way I interact with the world. It will change who I am. The people in the ads for these portable oxygen tanks are all in their 70’s. I’m in my 30’s. I’m outgoing and funny and positive and I can’t guarantee that those things won’t disappear under a blanket of shame if the first thing people see when they look at me is sickness. I don’t want Loch to be embarrassed of me in front of his friends. Parents are embarrassing enough. I want to be cool for him. I want him to be proud of me. I don’t want to walk the red carpet with my handsome husband and a tube on my face. I don’t want people to pretend I’m not there because it’s easier than dealing with what’s going on. Look, I’m not going to lie. I’ve had a lovely life as a pretty girl. And I know that pretty girls discover one day that they are no longer the beauties they once were and it’s an adjustment. I met a sweet older lady in the post office once who complimented me on my hair. She told me she used to have beautiful hair and when she was young she was quite the knockout. She told me that getting old is tough. That when people are rude or dismissive of her, she often thinks, “You wouldn’t have talked to me like that when I was young and beautiful”, and she’s right. People who complain about men making cat calls should consider what’s worse, the cat calls or the day they stop. That’s age. That’s life. With any luck you hope to take care of yourself and your body enough to grow into an attractive older person. People might not look at you the same way, or be as nice as they once were, but you can still be considered viable. Interesting. Sexy. Adding a tube to my face completely removes that possibility right now, and I’m just not ready for that.

A really nice girl wrote me to tell me her sister had died of PH 9 years ago, and though she had “no helpful advice per say”, she just wanted to let me know that her sister had also decided not to give up. To fight. To not let it take her. She wrote me to say it sounded like I had a similar attitude. It was such a nice letter, but the thing that stuck with me was that her sister had died. I hate hearing that. It’s so discouraging. I realize my disease is progressive. That you can be going along just fine, then you take a downturn, and it can be all over. It’s hard to see this oxygen therapy thing as anything other than a downturn. My lovely doctor told me that it’s no different than last year. That I could, and probably should, have started it then, so this is a positive step. It just doesn’t feel like one to me. My mind, sadly, tends to gravitate towards the negative. I wish it wasn’t so, but it is. Sean recently forbid me to read the PHA Newsletter. He told me he’d read it for me and give me any pertinent information, but I wasn’t to read it myself.

Pathlight Magazine Image from the PHA website

The problem was, every time I read it I found some article about a young woman like me had just died. Last year the daughter of the President of the entire PH Association died. She was 21. I thought, if the President’s daughter can’t make it, where does that leave me? The most recent issue had a little article written by a girl my age with PH. It was a testament to her husband, her primary caregiver. She talked about how much she appreciated him, and how he’d stepped up to really help with their brand new baby and how she couldn’t do it without him. I totally connected with her. I feel that way about Sean. A lot falls on him and he takes such excellent care of me. Especially since my parents live in Toronto, and his in Oregon, we really only have each other to lean on and it can be tough. It’s a lot of pressure to live with a baby and a sickness, and I felt this woman was writing about the same sort of life. I understood and appreciated her. Then, when I got to the end of the article, it said, “As we went to print, [this woman, this mom with nice husband and new baby] lost her battle with  PH.” WTF????!!!!!! The woman I’ve just connected to is dead? How am I supposed to be positive when I read stuff like that?

Throw that together with a day where my breathing is off, or I find out I have to wear oxygen, or I have to ask a grocery store clerk to lift Loch out of the shopping cart because I just can’t do it, and I’m a wreck.

Look, I don’t want, or plan, to die from this disease, but the reality is I can, and sometimes that’s all I can see. Some days are better than others. I just wish my problems were about juice on my carpet and broken CD players. In hindsight, those would be good days.

* I wrote this last week. Today, as you would have it, I feel fine. That’s the thing about this disease, ups and downs.

**As a side note: Another thing other sick people and I strongly agree on, is when you find out that someone you know is sick, not flu sick but might die sick, DON’T SEND FLOWERS. It’s such a nice thing to do, but when I was first diagnosed, my house had so many flowers in it, it was like I was at my own funeral. I hated it. Plus, flowers are pretty and then they die. It’s just not something you want to be reminded of if you’re dealing with your own mortality. Send a magazine subscription or nice lip gloss or a massage gift certificate. Send something fun that might perk them up. Leave flowers for hostess gifts, love, and the birth of babies.

Religion and Faith

Dear Loch,

Every night before I go to bed I come in to check on you. I check to see if you’re covered up, or sleeping across the bed, if you’re too hot or cold, and if needed, I adjust things to make you more comfortable. Then I kiss you, tell you I love you, and go to bed myself. The other night I was so overcome with love for you, that I felt the need to kneel down at your bedside and thank God. I thanked him for giving me such a blessing. I prayed for your health and safety. For your happiness and joy. I prayed that you’ll be blessed with love and success. And finally, I asked God to keep me around for as long as possible. I told him that I wanted to be a Grandmother.*

truthlighthouse.com

The thing is, I realize now that I should speak to you about faith – about religion – because it’s something that people learn from their families. It’s something, that should I be around, you will learn via osmosis, but if I’m not here for you to just absorb the lessons, I’d like you to know where I stand. People say never to discuss politics or religion, as the issues themselves are too polarizing. At the end of the day faith and religion are very personal choices and something that you’ll have to decide for yourself. I just want you to know what your father and I believe, so you go into that choice with a point of reference. You might decide to take a different path, but you should always know where you started.

My childhood church, St. John's York Mills. Image from wikipedia

I think it’d be fair to say I come from a “Church” background. Not Religious, capital R, but Church, capital C. I went to St. Johns York Mills almost every Sunday of my life (excluding summers when we were at the cottage) till I was 15 and confirmed. After that we stopped going regularly.  I’m not really sure why that was. I guess I had essentially completed all my “schooling” and didn’t have a place there anymore aside from the general congregation and that didn’t interest me. Maybe my parents went every weekend for me – to give me a good foundation – and once I had it, we could do something else…. I don’t really know. What I do know is, after 16, sleeping in on Sunday morning was more appealing than church. I just didn’t feel the need to go anymore and Granny and Granddad didn’t see the need to force me. I had taken what I could out of my religious training, and now could run with it. Looking back though, I can say that those foundation years were wonderful for me. I loved Sunday school. The stories. The songs. The friends. I joined the church choir and drama club. I loved the annual Church Bizarre (Granny was in charge of prizes and I got to choose them with her every year), and I loved my Confirmation class – though in hindsight, perhaps that was more for a particular boy, than the class itself. For a long time I would have described myself as religious. I took it all very seriously. A friend once told me I wasn’t just a Christian, I was a Creationist. Meaning I believed everything the Bible said as truth, and at the time, she was probably right. It wasn’t till years later that I really started to think about those beliefs I’d held since childhood.

Over the years I’ve had the opportunity to question everything, and have come to a place where I’d say I’m Christian because it’s the path I’m most familiar with on my way to God. I feel comfortable with the Christian concept of God. With God’s forgiveness and love. With the Anglican/Episcopalian church, it’s traditions and inclusivity. And, I believe our spirits go somewhere when we die. I believe we can be with our loved ones again after death. Or at least I believe we’re blissfully happy. I realize this is not a belief that everyone shares, but it’s one that I’ve always held on to, and now that I’m sick I find great comfort in. When I was first diagnosed with PH I ordered a book called Pulmonary Hypertension: A Patient’s Survival Guide. In it there’s a first person narrative told by a PH patient who’s had the disease since 1983 (Take that 2-3 years!!!). The story stands out because the rest of the book is written in a clinical and informational way so you can better navigate the disease. This particular section is a personal memory, included I’m assuming, to reassure those of us dealing with our diagnoses. In the story the writer remembers a time before she knew she had PH and was driving in the mountains with her husband and 8-year-old daughter. When she got out of the car to walk around she passed out. Altitude is not kind to PH patients. According to her husband she stopped breathing and had no pulse. He got her out of the snow to the front seat of the car to try and revive her. During this time she writes that she floated above the scene “looking down through the metal roof of our car at that poor unconscious woman.” She says she felt wonderful. That there was a warmth on her back and it seemed as if her “very molecules were loosening” so that she “was expanding into the universe.” Then her little girl screamed “Mommy! Mommy!” and she writes she had to “squeeze back into her body” to soothe her. In that moment she recalls her body feeling “cramped and limiting.” She finishes her story by saying, “I don’t know what to make of all this. But we seem to come equipped with all we need to deal with the entire course of our lives, including the end. It is a great comfort to me to know this.”**

adampowers.wordpress.com

Her story was a great comfort to me.  It wasn’t, however, the first time I’d heard such a thing, nor would it be the last. There are many stories of “seeing the light” or floating above our own bodies. My dear friend’s father was apparently talking to people who weren’t in the room just before he died, and telling her family things that he couldn’t possibly have known, unless his visions were true. Even your own dear Grand Mimi was as spirited as a school girl in the month before her death, talking animatedly with old friends she could see, but others couldn’t. Who am I to say they weren’t there? Frankly, I like to believe they were. I wondered aloud once what age we are in heaven. Like, if we die very old, I’m sure we don’t remain old in heaven…I’ve decided to believe that we are whatever age we want to be – the best we were – and appear to our loved ones as the best they remember. So if I die young and Sean old, we’ll be the same age in heaven. My mom won’t appear to me as a young girl even if she might appear to herself as such. At this point, whether heaven is a real place or not, is almost immaterial. I believe it’s there. I believe in God, and light, and hope, and something bigger than myself. I don’t believe when we’re gone it’s all over. And, I believe that if I have to die early, I’ll still be able to hear and watch over you. That my love will find you no matter what.

I’ve actually have had a taste of “the bigger picture” myself. When I was 16 I was in a terrible car accident with Granny and my first dog, Bailey. I was driving my mom’s VW convertible on the 401 extension to the cottage. Bailey came into the front seat and, as I pushed her back with my right elbow, I pulled the steering wheel ever so slightly to the left. Granny, who’s a panicky passenger on a good day, freaked out. She yelled “You’re in the shoulder of the road! You’re in the shoulder of the road!” Her alarm made me react too aggressively and, as I yanked the wheel to correct, I overcompensated and the car took a hard right in the middle of the highway. The fact that I didn’t hit another car still astounds me. The car, which was now going 60m/h at a right angle to the rest of the traffic, drove off the road and took a nosedive into a small ditch. But, since we had so much momentum, the car started to roll. We ended up rolling 6 times. 3 times front to back, and 3 times side to side. During one of the rolls, my seatbelt released. When Granny came to, I was about 40 feet from the wreckage lying in the grass. But here’s the thing: there were rocks everywhere, but I ended up in grass. My seatbelt released but not on the first roll, so that I flew through the windshield, but at some other point after the roof had ripped off, so I more flopped out of the car rather than anything else. The car could have rolled on me, but it didn’t. I could have landed on my head or neck but I landed on my face. Bailey, who ended up running against traffic on the highway with a with a broken leg, was picked up and taken to a local vet. The first person on the scene was a nurse – with blankets in her trunk and extensive first aid knowledge – and, despite the fact that everyone said I should be dead, I was fine. Immobile and needing nasal surgery, but otherwise fine. People always say to me, you must have been so scared. But that’s the thing, I wasn’t. As the car started it’s first roll, and the windshield filled up with grass, I was incredibly aware of how calm I felt. Not like “Oh God, Oh God, Oh God.” But more like “Huh.” There was nothing I could do but I didn’t feel out of control. I felt, serene. Something was with me. Someone. Some spirit or higher power or purpose and, if that had been the end, it was alright.

I try and remember that feeling as much as possible. Someone once wrote me that if God had decided it was my time to go, then I should go in peace and not fight it. That acceptance in itself was a lesson worth teaching you. I understand and appreciate the sentiment, and I hope that when my time does come – and I’m 94 and fully in control of my body and senses – that I will go in peace and calm. But for now, I’m not that person. I’m more a “rage against the dying of the light” type. I want to be here, and I will continue to work with science and pray to God that it happens. As far as I’m concerned faith and science go hand in hand. I’m convinced there is a place for both. There certainly is in my life.

analytical.wikia.com

I also accept there’s a place for all Religions. A religion, in itself, is a man made construct of faith. Religions are subject to the time and place in which they were created. I’m a believer in the mountain theory. That we are all on a road to the same mountaintop, the same goal, the same point. We’re all just starting at different places, depending on our geographic location or religious persuasion. All routes are legitimate. All make sense. All end up at the same summit. How else did we get flood stories from over 100 different cultures and time periods? So if you want to be a Buddhist, be a Buddhist. If Judaism speaks to you then do that. If Christianity or Hinduism or being a Muslim are your comfort then make that choice. Find your truth and don’t judge others for theirs. Even atheists have a place. Their choice is no choice. They choose not to believe. And it is my belief that they’ll end up in the same place as the rest of us. I just think it’d be hard to live in a world where you feel there is nothing else out there. That you’re all alone. But if that works for you, it works for me. As long as you live your life as a good, decent, non-judgmental person, I have no place to criticize.

randomviewpoints.wordpress.com

Currently we don’t have a church home. We used to go to a great Episcopalian church in Beverly Hills. We loved it and fit in right away. It had a great balance between the old school pomp and circumstance -the hymns, the robes – and a new world mindset – openly accepting gay couples and parishioners, and an out spoken female canon. We did a couple classes there (Alpha/Beta) that allowed us to question our own beliefs and what were were taught. In one class I said, “I feel God, I feel the Holy Spirit, I’m just not sure I feel Jesus.” Some churches would be horrified by such a discussion, but not this one. It encouraged us to find our own path within an environment of acceptance and belonging. We ended up leaving that church for 2 reasons. 1, we moved and it’s now quite far away, and 2, after the first year, not a day went by that we weren’t asked for something – time, money, to be a committee member – and we started to feel pressured and guilty. We didn’t have any time or money, and we ended up drifting away because we simply couldn’t meet their requirements. I have to say though I kind of miss it.

Nowadays, though we don’t go anywhere Sundays other than brunch, we still have a faithful house. We pray. Not all the time, but if we’re all together before dinner, and often before bed. We teach the Christian stories that go with the holidays, like Christmas and Easter, and I think if we found the right fit we would probably go back to church. Lately though, I’ve found that all the places we look at are just too much. Too many rules. Too much criticism. Too much us versus them. And that’s my problem with organized Religion. There’s all together too much judgement. I believe in living by values and parables like, ‘do unto others’, but what I have a problem with, is any kind of religion or group that dictates how someone should behave. Not how they should live – like being good or kind or thoughtful or giving – but how they should BEHAVE. Behavior like how you dress, or wear your hair or whom you should marry (or if you can marry at all). I struggle with being told what you can and can not eat, or who you should or should not hate. I understand that many of these things are centuries old rules and traditions, but I feel uncomfortable with the concept that this kind of doctrine is God’s will. I believe that when you start dictating what people should DO, it is more about control than faith. More about man than God. More secular than spiritual. Because at some point, some person, some human, wrote down those rules. And though they were written as God’s will, they were written by man, and man, by nature, is corruptible. Man seeks power and control. Man is fallible. There are too many directives in too many books that keep one group separate from the rest. Too many mandates that degrade one sex over another. Too many conflicting stories within individual texts themselves. The Christian Bible calls for an “eye for an eye” but also says, “thou shall not kill”. They can’t both be right. I don’t believe my beliefs negate your beliefs. I don’t believe God values one kind of person over another. I don’t believe that any God would sanction the killing of others in his name. And I certainly don’t believe that God meant for a woman who’s been raped to be stoned to death for infidelity.

I’m also reticent of religions that make you pay to move up or forward within them. If that’s not a man made construct I don’t know what is.

free-extras.com

I guess my advice to you would be to use your best judgement and to see the great religious works for what they are, man’s version of the story. There has yet to be a scripture that claims to be a direct rendition of the word of God.  It’s not fact. It’s interpretation. It doesn’t mean don’t respect it, it just means understand it’s origins. We have family members that see the Bible as the only truth and it’s a bit of a strain. Any court of law will tell you that many different people will come up with infinite versions of the “truth”. The Bible, as with all the other great tomes of religion, has hundreds of different authors writing over many different centuries, translated into multiple different languages. Don’t get me wrong, I think you should be familiar with the Bible, it’s a great book filled with amazing stories. It will help you with art and history and multiple points of reference.

Like if someone alluded to a situation being a ‘David & Goliath’ thing, you wouldn’t know what they were talking about if you didn’t know the story. Or if someone referred to wielding their celebrity like Samson’s hair, you could make the connection.

admavricks.com

The Bible is a great thing to know. I’m just saying don’t be too rigid – whatever faith you choose. Don’t let men’s words from centuries past be the light that guides your way. Accept the light faith brings but navigate by your own stars. Find what’s right for you and always treat others with respect. You probably won’t go to church the way I did, but I do hope that you get some religious education both in school and at home, to fill in what you’re missing on Sunday mornings. I’d like you to you have something that helps you feel that you’re not alone in the universe. I also hope you, as I do, will find solace in prayer. Find the time to thank whatever power you believe in for the gifts you’ve been given. I always cry in church at Christmas because I feel overwhelmed. I’m filled with the spirit of the holiday, and family, and giving, and yes, God. I believe I’m loved. I believe I’m protected. I believe we’re not alone.

Whether I believe a virgin mother actually laid her baby in a manger is just semantics.

God Bless you baby,

xo mom

panhala.net

* I picture God as a man because that’s how it’s ingrained in my head, not because it’s right. It’s just how I see him.

**Pulmonary Hypertension: A Patient’s Survival Guide 3rd Edition “If Treatment Fails: Congestive Heart Failure” p. 161