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.

Family

Family means many different things to many different people. It all depends on who you ask. I know some of my 3rd and 4th cousins very well, some I have never even met. It can be a strange fact of life for me to wrap my head around, but I think if you need certain people in your life, the world has a way of making them a part of it through whatever avenue it takes.

This past week or so we have had a death and 3 new young ones diagnosed in our little Cystinosis community. Of course the new families diagnosed are only ones that I am aware of, I'm sadly sure there are more, but it breaks my heart each time nonetheless. With all of this going on I have really been aching for the company of these special people; whether it be because of a conference (which I have to wait until July 2011 for), or just a trip to hang out and be our goofy selves.

Indeed there are many ugly facts that come with living with any sort of medical illness or diagnosis; you want to know life expectancy, you want to know what kind of life your child is going to have, you want to know the quality of life your precious one might have, you want to know medications, treatment options, risks, side effects, and so on and so forth. And then something breathtakingly special happens; you meet people going through this journey with you, they might be at different stages, but they understand in ways others truly can't, people who are strangers and yet an hour after meeting them you feel you have known them forever and a day. I've been blessed with this experience many times over my 26 years of this disease and it truly is something magical. I do not know what I would do without my extended family who make up my Cystinosis family. They are there for the little moments, the big victories; like a surprise and previously thought impossible pregnancy and everything in between. They understand dual alarm clocks so you can wake your child up in the middle of the night to give them medicine, they understand medicine that smells and tastes like rotten eggs, they understand doctors who do not know what they are talking about, they understand the frustration and pure hell of misdiagnoses, they understand insurance battles, they understand the battle of a perfect diaper system so you don't have to wake up twenty times during the night to change your child's bed sheets. They understand the daily struggle, the hourly struggle, the heartbreak that your life is nothing like you thought it was going to be. And even though you will reach that state of acceptance, you can mourn the loss of normal for the rest of your life. They understand that, and it is okay. Along the way, they will make you laugh through your tears.

And most importantly, they understand and appreciate a really hilarious vomit story.