10 December 2010

Love & Other Drugs

A few weeks ago I went to see Love & Other Drugs. The fact I saw this before The Deathly Hallows might as well be a sin. But that is another post entirely, that would probably take me hours to write, about how seeing the Harry Potter series just isn't the same since my sister has been gone.

(This post does contain some spoilers. Just wanted to share that warning so you aren't disappointed if you haven't seen it yet. And if you haven't, you should go see it now.)



I went into the movie thinking I would see the storyline portrayed in the trailers; player Jake meets his match in co-star Anne. Apparently this was a huge mistake. I'm not quite sure what their angle was on that, because I ended up sobbing for most of the movie and loving it anyway. Except that it would be nice had the newly committed and brand new mommy with the chronic illness been warned of the subject matter of said plot. You know, just to avoid the swirling dance of tears and epiphanies during a movie in which I thought my range of emotion would consist of nothing more than making sure I wasn't obviously drooling over Jake Gyllenhaal's everything and coveting Anne Hathaway's curls.

I admit I'm a sucker for sick girl doesn't want to commit, is afraid to love fully, type of movies. Sweet November made me crazy emotional but I loved it despite Keanu Reeves' horrible terrible no good very bad acting. Steel Magnolias, I can't watch very much because I might possibly drown in my own tears and never get out of bed again if I indulge in it too much. (Woman dies of kidney failure shortly after having a child doctor's warned her never to have? Yeah, enough said. ;)

There were gems of funny throughout the movie too. Sometimes it felt as thought it was switching back and forth too abruptly, but the comic relief was much appreciated once I realized where they were going with it all and that darting out of the theater and sneaking into Harry Potter might not be the best way to cope with my reluctance to sit through a movie that hit entirely too close to home.

The thing is, (well, of the many things) I know there are more devastating diseases out there than Cystinosis. I know I've been given the keys to experience many bursts of life that so many others do not. I took my first steps, I went to my first day of kindergarten, I learned to drive, I graduated college, I've been to Paris and Amsterdam, I've loved, I do love, I not only became pregnant, I experienced birth and was blessed with meeting my daughter. However along the path of all of that has been many near death instances, eye drops every hour so I don't go blind, medication every 6 hours that wreaks havoc on my digestive system, a kidney transplant at 11; while my peers were spending their time worrying about the adjustment to junior high school, I was wondering if I would die during surgery, or worse, wake up. But it is my life and one of the reasons it is so frustrating (as so eloquently pointed out by a mother of a child with Cystinosis, who is like a second mother to me); we get glimpses of normal and then just like that we are puking for days, fighting fatigue, wondering where that normal walked away to be and if and when it will return again and grace us with it's presence.


You splatter and sprinkle love into any kind of illness and of course it gets tricky. None of us would choose to watch the one we are tangled up in suffer, lose basic skills required for day to day living, or be bed ridden in pain. But it is difficult for both parties; one feels helpless, the other feels lost. And of course you never know when someone is going to leave this earth, it could be in a car accident tomorrow. When you have a life threatening illness hanging over your head it is a bizarre knowledge to have that it will most likely be the reason your chapter ends.

There have been four young adults who have passed on this year from Cystinosis, as far as I know. I am an active part of the community and because we are so small, everyone knows everyone; we hear the news...good and horrible. All four of these people were younger than I am. Is that thought terrifying? Of course it is. (For example, lately I'm choosing to ignore the fact I need to figure out what to do about my gallbladder and stop having nightmares about dying during surgery or developing colon cancer after being left with no gallbladder. Because only eating once a day leaves me completely and utterly drained of every last ounce of precious energy.) I worry about not being around for Sookie's first day of school, or teaching her to ride a bike. I think about her having her own children one day and wonder what she will remember of me. All I can do is try to instill the magic of life, sweet lessons, little victories, and cherished moments into her innocent eyes. Teach her to always and forever live with a full and open heart. Give her the confidence to wear herself on her sleeve and to never apologize for who she truly is. Show her that this world is a place full of whimsy, hope, light and love.* Although sometimes I get overwhelmed and panicky; it feels like a race against time.

*(Well and of course the occasional lesson on Manolo Blahnik.)

The unknown of your own mortality and well being holds power, the future can be foggy and threatening; so you really have no choice but to put everything you have into the passion of the now. Cement your heart in the moments of today.



30 comments:

  1. Thanks for participating in Follow Me Wednesday! Thanks for following my blog! I'm following you back!

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  2. Kudos for your honesty. What a touching post.

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  3. Very touching post, that movie must have taken you for such an emotional ride! I saw it and loved it too. :)

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  4. Very well-written post, Tahnie! Your thoughts and experiences are definitely helping me put my priorities in order.

    Just came over via SITS :)

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  5. Such a lovely post. Need a new box of tissues.

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  6. Beautiful post! I was interested in your movie review - but this was so much more! You have an incredible attitude and wisdom about life. You'll be in my thoughts and prayers. So happy to have found you through Blog Frog.

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  7. Hopped over from Blog Frog. So glad I did. Your transparency has helped me to put my own issues in better perspective. Thank you so much! Will say a prayer for you & your family!
    Carrie
    http://www.wahmto5.com

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  8. Lovely writing, Tahnie. Thank you for writing this post. It has helped me see more beauty in my day.

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  9. Beautifully said. Those ideals about the magic of life are things we can all hope to instill in our children.

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  10. Beautiful post... praying for you that you'll have many more years with your daughter.

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  11. You're truly inspiring,and no, I never did hear of cystinosis. You sure beat the odds and are amazing, you are definitely meant to live a long life.

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  12. Great post. You're going to make me cry, though!

    I've been healing from brain surgery for awhile (feels like forever) and I want to watch this movie but I know that it's going to bring back all of those emotions that surrounded the whole turmoil of my aneurysm and the craziness that surrounded it. I was *just* married when it all went down so it was really a heavy thing to navigate. Happiest time of my life/scariest time of my life.

    I can't imagine having to make those decisions with a child. I don't know if I would have been brave enough to face it. Especially on those days when you just want to stay in bed and ignore the world all day? You can't with kids.

    You're brave and beautiful and raising your girl with your grace — that's a miracle onto itself.

    Found you through SITS. Glad I did!

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  13. omg i am way too emotional for those types of movies.
    I will pray for you.
    Maggie
    http://passionatelyartistic.com

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  14. I saw this one! Didn't have a clue what it was about, but I did like it. Not a typical story line! I would recommend it!
    Bernice
    http://livingthebalancedlife.com/2010/six-steps-to-a-saner-christmas-part-2/

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  15. Over here from Gypsy Mama. What an honest and brave writing. Now I must cruise through the rest of your blog!
    Elizabeth
    http://www.justfollowingjesus.com

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  16. This is lovely. Thank you for sharing your heart. Your daughter is lucky to have a mama like you. :)

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  17. Just stopping by from Gypsy Mama (well and I stopped by on Kelly's Tour of Homes too!) Thank you for making us aware of your illness and how we can pray for you! Blessings to you and what a sweet little girl you have!

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  18. wow. beautiful. i have no other words. thank you for this vulnerability and beauty.

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  19. I have never heard of this, either, and I, too, am glad to be made aware. God bless you for your beautiful heart, and your willingness to share with us all.

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  20. Chronic illness is NO fun and I say that as a mama with experience. But, it does bring a fresh and unique perspective on life. Thank you for sharing your story

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  21. Such a touching story. I don't fully know what Cystinosis is but I plan to go find out right now. Thank you for sharing your story! Much love to you! May the Lord bless you with many years!

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  22. This is an amazing post Tahnie. I have no desire to see the film because I am not into "chic flicks" and now I really don't want to see it because of the sadness factor. Ever since having kids sad movies take on a whole new meaning. I can't even watch apocalypse movies or I am a wreck. But for you it must be 100 times harder. You have such a positive attitude despite everything.

    I am sending hope and hugs your way. You will be there for your daughter for many, many years.

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  23. Well, let me just start by saying that I haven't seen the Deathly Hallows yet either and I feel like I can barely stand that we haven't found a babysitter yet. So, there's that we have in common.

    As for the other - oh sweet friend - what a burden for any mama to carry. To be sick, and not only worry about one's self but about one's kids and how it all impacts them. My own mom died when I was 18 from leukemia. And it shapes our stories, for better or for worse. But mostly I think of the better because I see how God has sifted and refined and healed us in ways we didn't know we needed. I pray that you all find that on your journey. It sounds like you are. It sounds like you could teach us a thing or two about it all. And therein lies the victory.

    Thank you for sharing those lessons and not keeping them to yourself.

    Warmest blessings
    Lisa-Jo

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  24. I have no idea what lies in chronic physical pain; but I do know the deep ache of chronic spiritual pain. No the same, but then not all that different either.

    I love the comment you made about living today with passion because we won't ever know what comes. I ask my kids each and every day if they lived their lives well---did they love and serve and honor and protect? And each morning we pray that God gives us the strength to do so.

    Thank you for the reminder here!

    Many blessings,
    Lindsey

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  25. I have no frame of reference for this, but I'm so glad I read about your experience, because it opens up my eyes to a whole nother world. Thank you for sharing this!

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  26. I hadn't heard of Cystinosis before but I admire you for the way you seem to deal with it. I haven't seen that movie but it sounds like one I would love.

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  27. Wow, thank you for being so honest. I can't imagine what you must deal with on a day to day basis but thanks for trying to help us understand what it is like for you and many others through your words. Your daughter was given to you, specifically chosen as her mother, what a blessing. Keep your courage and hope and thank you for letting some random people into something so intimate!

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  28. Wow, Tahnie, I don't even know what to say to this. I couldn't imagine. Your daughter is truly blessed to have you has a mother and I'm sure that you'll teach her to live each and every day to the fullest...something which most of us take for granted.

    Stopping by from the Blog Frog.

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