I have a terminal disease...

...called life.

I am writing this in response to this latest blog entry by Snickollet. If you get a chance, read it and also follow the link to Kris Carr's website about her new book and film, Crazy Sexy Cancer. I can agree with Snickollet's discomfort with the whole thing. She fought a cancer battle with her husband and lost. Kris Carr is fighting her cancer battle with all of the anger, blame and fortitude she deserves. I am angry at cancer for both of them. I have no right to say anything else on the matter. My cancer has not yet been diagnosed, and I have not walked in those shoes. Yet.
This is where all of my friends/family roll their eyes and label me (again) as the pessimist, while I smile politely and label me (again) as the realist. If you live long enough in this world, you will find a cancer growing inside of you. The sad thing is, "living long" is now starting to apply to people in their 30's, like Snickolett's husband and Kris Carr. My educational background is in physiology. My research background is in cell biology. I have stared at textbook pages and research articles that only put out big words to explain the truth: We know nothing about the why, what and where of this disease. I have worked in a lab where I have grown stem cells in a dish and seen them turn to cancer cells before my eyes under a microscope.
I have just learned of a friend's cancer diagnosis.
A best friend's mother just died of cancer.
I have watched family die of cancer.
All of my current hospice patients are dying of cancer.

Cancer...right now it is all too much to mentally grasp.
Part of the reason that I am so involved in hospice is because I am concerned with the way we humans face and fear death. The death of a loved one is going to transform us no matter what, and hospice folks try their best to make it, well...whatever needs to be made. They watch and listen and provide comfort care for the dying and their loved ones.

Sure, sure...take your vitamins, drink bottled water, buy organic and get all huffy about it. But realize this: no human has left this Earth alive. If you are alive, you have a terminal disease. Say it aloud. Death, death, death...we are all going to die. This is the only thing we know for sure.
Do we have a right to mourn our dead? Yes, this is the healthiest thing we can do. Do we have a right to be lost without the one we lost? Yes, this is love. Angry? Yes, get angry. Sad? Yes, cry your eyes out every day if you need to. We all have a right to these emotions. We all feel our losses in different ways.
But please, please, readers don't get angry with what I am about to say. I have very few opinions about things because I am always trying to walk in other people's shoes, and I try to consider their circumstances. However...

These are the things that are nonnegotiable with me, now that I have accepted that I am terminal:
1. Forgive.
2. Laugh at yourself.
3. Rest.

I am not an expert on living and I am not trying to be didactic. Oh, trust me, most days I am incapable of #2 and #3, and that is where #1 comes in.
I am dying. I have a terminal disease called life. Say it, and go about your day.

When Death Comes by Mary Oliver

When death comes
like the hungry bear in autumn
when death comes and takes all the bright coins from his purse

to buy me, and snaps his purse shut;
when death comes
like the measle pox;

when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering;
what is it going to be like, that cottage of darkness?

And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,

and I think of each life as a flower, as common
as a field daisy, and as singular,

and each name a comfortable music in the mouth
tending as all music does, toward silence,

and each body a lion of courage, and something
precious to the earth.

When it's over, I want to say: all my life
I was a bride married to amazement.
I was a bridegroom, taking the world into my arms.

When it's over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened
or full of argument.

I don't want to end up simply having visited this world.

Keeping the Sabbath

I try to rest on most Sundays. I tend to reserve that day for some church, visiting my hospice patients, and some quiet time with my family. However, this past Sunday it was time for me to attempt my first postpartum triathlon. This was triathlon #9 for me, but #1 after giving birth, losing 70 pounds and reminding my body what it was like to swim, bike and run in succession.

I have fallen in love with triathlons. This is funny because I am not athletic. I am not a fast swimmer or runner, and I am kind of a clueless biker (read on...). I am also the most uncompetitive person on Earth. I don't get into arguments or debates. I hate games and any sport that involves a team or a ball. So how can it be that the training and racing are worth it? Because I love to push limits. I love to think about what my body and mind probably cannot do, and then do it. ALL of our limits are self-made. If you open your eyes to see the ordinary people around us breaking their limits every day, you would agree. Take 7 minutes to watch Team Hoyt here, and I promise you will never forget what you see.

Also, triathlons scare the crap out of me and I try to do as many things that scare me as possible. Again, limit pushing. Trust me, I wish that simple breathing and working and consuming would be enough for me, but I was mis-wired while being built. I get a lot of Wows! about doing these things that scare me, like triathlons and visiting the dying, but I get a lot more you are a freak looks and comments. Oh well. I do not do these things to impress anyone or reserve some sort of comfy spot in an afterlife that I could care less about. It is this life that I am supposed to love, and these things remind me how to love it well. I promise, after I complete the Ironman, I will take up knitting.

Here is my triathlon recap:

Swimming is the worst part for me. I love to swim in a pool, but triathlons are a bit different. This video clip does not exaggerate a bit. I was kicked and tripped as I entered the cold, murky water of Lake Erie, and when I began to actually swim I was quickly reminded what that water tasted like. Imagine dishwater that has been sitting around for two weeks. So, I spent most of the swim calming myself down because my only other choice was drowning or clinging to the nearest rock. About half-way through the swim I realized I was okay. This is what I trained for! I kept it strong and steady, and I was so proud.

Biking is usually the part I love. I have a brand new, beautiful bike this year. I know nothing about this bike. My faithful readers (both of you) know that I had a few minor bike issues last weekend during the MS 150. I failed to do an appropriate bike check before this race, and this resulted in what felt like riding through quicksand. For 14.3 miles. I was upset for a minute because I knew there was something wrong that I did not know how to fix. I now know that it was something simple, of course. There must have been something in that lake water that caused me to shift gears (ha, ha) mentally. I started thinking that this wasn't so bad...true, I was putting about 4 times the effort into this biking, and I was now WAY behind the field and would probably finish last, but there was so much that was going right. I was doing triathlons again. I survived the swim. The sun was coming out. I was going to see my daughter and husband later. My best friend from New York was visiting and waiting for me at the finish line.
My quads and calves were bursting at the seams, but I grunted onward.

I was happy to re rack my bike and put on my shoes for the 5K run. I forgot that legs don't like to run after biking. Especially injured legs (see MS 150 post). By this time, I was way behind and most of the runners were running in the opposite direction, towards the finish line. No problem. I was only out there for me anyway, so I did the only thing I really can do well: smile like an idiot and breathlessly cheer people on as they ran past me.

My friends were all waiting at the finish for me. Michelle (super triathlete), Brian (rookie triathlete) and Meredith (faithful supporter from New York).

It is so easy to have the body or your equipment fail you during a triathlon. I feel so lucky that I was able to draw on an important lesson from a great teacher, Dewitt Jones. Celebrate what is right with the world instead of focusing on what is wrong.

Did I come in last? I am not sure, I have not even thought to check the race results yet.
In the game of learning how to reframe circumstances to see them differently as a way to push my limits, I blew away the competition...my attitude.

Lord of the Flies

We have had an overabundance of black flies in our house lately. It is August after all, and I do remember these black flies from last year. I remember it kept the cats busy and content. Every now and then they would leap through the air, and then sometime later we would find a fly corpse on the floor.
This year, however, things have been different. My husband and I have noticed that these flies are fat and slow. Yesterday, I had one hover in front of my head and practically start a conversation with me. Even the cats are worn out, despondent.
Now I have to briefly change subjects.

I am married to man that I don't deserve. He is crazy about me and he is crazy about his daughter. He has put up with my over-the-top worrying and mood swings. He has put up with my countless, expensive diets that don't stick: low carb, all-raw, all-green, all-vegetable, no dairy. He has put up with my faith in infomercials that has stocked our house with about 20 anti-acne treatments, a gym worth of exercise equipment and a juicer. He almost passed out when I told him that I decided to become a triathlete even though I had never swam, biked or run competitively in my life. Yet he cheers me on through all of this. Truly, I don't deserve him.

He does not have many hobbies, but for some reason he is now extremely interested in Charcuterie, the art of curing meat. He has done little things...like pork confit and duck prosciutto. I have only stood aside and reaped the yummy benefits. However, his baby...the one he has been planning for months is real prosciutto. The kind you make from ham. He has researched the correct ham to buy for a long time. When I came home from a recent trip, there was a very large ham in our refrigerator. For some reason, it had to take up residence (and all the room) in the fridge for a couple weeks. Just as I was about to get really pissed, the ham came out, went through a bath of a mine's-worth of salt, and was hung in our basement. I know...great for the home sale. After I turned my nose up at the prospect of bugs and rodents eating this ham, he assured me that peppercorns were the perfect and only deterrent he needed. Ok. Whatever. I didn't read the book. I was just ready to have my fridge room back to store the 2 pounds I kale that I needed for my latest fad...green smoothies.

Yesterday, my husband came home from work and napped for a while. This was not like him. After some probing, I learned he had a tough meeting a work. I was having a tough day too, so we left it alone. After baby girl came home from daycare and we started knocking back a few adult beverages to erase the day, the truth came out. That morning, my husband discovered that the ham was spontaneously generating the fat flies that have been threatening our very lives. He was sorry. He was sad that he put so much work into something and it failed.
I tried to be a good wife and not make fun of him. I kind of failed at that too.

You know, my husband is often told that he should become a chef, caterer or some other kind of food business slave. "You should cook for rich people." He HATES hearing this. He and I both know that once you try to make a living out of something you love, that love dies quickly. You might as well sell your soul. He wants to continue this love, charcuterie, as a hobby to share with our family and friends. He wants them to taste something other than Oscar Meyer...he wants them to taste his effort and his care. He wants to teach that the most perfect tasting things, like wine, take time and patience.

I really, really felt sorry for him.
Hey love, "you should grow flies for rich people."

Letter to my 14-month-old daughter

Happy 14 months baby doll,

At 14 months, am I still justified in calling you baby? I'd like to think that I am, considering that I still change your poopy diapers a few times a day. Besides, it wasn't too long ago that you needed me to carry you everywhere. Now you resemble a human pinball, running and bouncing off of things, making them ding and click and sing. Yesterday I caught you trying on my shoes. My expensive shoes...this could be a problem.

I was told the time flies by with an infant, and I will not argue this. Can I say that I have loved every moment of it? No way. There were days that you had me crying before noon. It is not that you are a bad baby, it is just that you are a baby, and I am so new at this. I am worried that something that I will do will send you to the shrink's couch before you are twelve. You have done a great job of teaching me to calm down...with that smile that lights up your face and your amazing adaptability. After twelve will be a whole new ball of wax. I am sure we will both be on some couch by then. That will be a whole new letter.

No, you are a fantastic baby. I have spent the last 14 months in Awe. I have watched you become. When I was pregnant, it was hard to imagine that I wouldn't just give birth to a smaller me. I am delighted to see this is not the case. I have never met anyone like you.
Everything makes you happy in some way. Your presence in the moment is unmistakable. You turn heads where ever you go, which started the day you were born. I was told by the nursery staff and your pediatrician that it was impossible to be a newborn and be that beautiful. To this day, I have people chasing me down in stores to tell me that you are the most beautiful thing they have seen. If this blinding beauty continues, it could also be a problem. We will save that talk for later.

I love your over-adoration for books. I hope it continues and that you will love to learn, but there is such a thing as over-read and over-educated. Let's stick to board books for now. There is a lot to learn, but by the time you become my age you will realize that there is a lot to unlearn also. You see, the presence that you exhibit now will dissolve into what we call the rat-race. Our greatest danger is to let the days slip away, unnoticed. You will feel the need to become more, to do everything and to be it all at once. I hope you are one of the lucky ones who can see through this illusion early. I hope that you will find the importance of presence again. Of simple being. This is the holy grail, baby girl. This is all we have, this moment. You have helped me learn this all over again.

Your father and I have one dream and hope for you. That you find the happiness that can only be found by being you.

This is all a bit too much to say to a 14-month-old. For now, I will stick to staring at you endlessly, watching you bounce and giggle and scream.
Thank you for being my most skilled teacher.

My whole heart,
Mom

MS 150

This past weekend I set out to cycle 150 miles with my husband and our friends, Michelle and Brian. The purpose of this event, called the MS 150, is to raise money for multiple sclerosis. Michelle and I completed this event two years ago because it was towards the end of a triathlon season, and we figured it would be great training for the Ironman that we both plan to do...someday. Two years ago, we had great weather for the MS 150 and it was grueling but rewarding. We were thanked and cheered on the entire way. We loved it.
Last year we did not participate because I was recovering from birth and decided that putting all of my weight on my crotch for 6 hours, two days in a row, was not a good idea.
This year, however, our husbands decided that they wanted to give the MS 150 a shot. We have all been looking forward to it and training during this entire summer.
This past Saturday, the weather was a perfect 70 degrees and the sun was shining. The 75 mile ride from Berea to Sandusky was almost flawless. Ok...when I say "almost" I have to mention that I fell off my bike in front of a huge intersection. The impact was so hard that I thought I broke something, but it turns out that only my legs, arms, back, bike seat, bike chain, pedals and ego were battered. I was able to continue on.
When we arrived in Sandusky we were proud and exhausted. We decided to stay at a local hotel (for the soft beds), went to dinner and fell asleep early. None of us slept well because the pain in our bodies increased and woke us up during the night. By morning, I realized that my left knee was starting to function less like a knee and more like...well, something that can't bend. I was scared that I would not be able to make the return trip with the rest of my crew.
After about 30 minutes of icing and 4 Advil (who needs a liver, anyway?), the knee could bend a little. All of our spirits were low. It was pouring rain. It was in the mid-50's. We hurt. We had 75 miles ahead of us. We did not want this day to begin.

Do MS patients feel this way when they wake up some days? Yes. Of course they do.

We were able to put our soggy selves onto our slippery bikes to set out in the rain. By the first intersection, I had fallen again. I immediately burst into hot, frustrated tears and said some very unkind words about my bike and my knee that wasn't quite working right. After some time, we all began to smile and laugh and joke about how ridiculous this was. We were riding our bikes in the rain, and it was COLD. But we were together with a goal and a purpose. You just can't say that about every day.

To sum up that day, things didn't go as expected. By the time many riders completed the first 10 miles of the ride, they were starting to show signs of hypothermia. We were encouraged to not go on, but Michelle, well...that will be a different blog post. Let's just say "not completing things" makes her go insane. We kept going, but learned that we would not be allowed to continue after the half-way point, only 18 miles away, because the conditions (rain and cold) were just too dangerous. To make an already long story short, Brian and Michelle got flat tires before the half-way point. Brian's was not repairable (really Michelle, it wasn't), and we were transported by a Safety and Gear vehicle to the half-way point. While 2000 riders were waiting to be picked up by bus, we were offered a ride by two angels with an SUV big enough to fit 4 extra people and 4 extra bikes. Alleluia.
Unfortunately, these angels arrived a minute after a medical personnel saw how bad I was shivering and made me strip down to my sports bra in front of those 2000 riders. Michelle will never let me live this down. Who knew it would be so easy to get me to strip? I know this person thought I was in trouble and close to hypothermia. Maybe I was. Maybe I just didn't realize how much I like taking my clothes off in front of people. I will have to think about that one.

This post is already way too long. We all still hurt. The pain kept my husband and I up most of last night. My left leg from my first (of three total) falls feels ruined, which is going to make the triathlon that I have to do in 5 days a little difficult. We will recover.

The purpose of this post is gratitude. I have never felt so impressed by my friends, volunteers and other riders during this event which quickly turned into an emergency situation.
Things rarely go as planned. When they don't, you adapt. Nobody knows this more than a patient with MS. My gratitude to those patients overflows this morning...as my body recovers and I am warm and dry. I hope that my effort took the pain from one of those patients for one minute. I hope that they thought to themselves hey, I am pain-free at this moment for some reason. I hope that reason was me. If this did not happen, I hope the money that was raised from this event makes a big leap on the road to a cure.

Was the weekend fun? In a strange way, it was one of the best. Was it worth it to risk ourselves in this way? No question.
See you next year, MS 150.

Jesus, Mary and...!

We are trying to sell our house in what is possibly the worst housing market in the United States. The house that we have been living in for 5 years is just starting to close in on us a little, and we would like an upgrade. We have been listed on the market for about a month and we have had no lookers, not even during an open house that we held last week. Preparing for that open house caused the sweat, tears and near-divorce like any good home "project" does for any normal married couple. I even said, "If this house does not sell TODAY, FORGET IT, we are not doing this anymore!" No sale. Not even a glance from the outside world.

I am Catholic, and let me tell you something about us Catholics. We tend to get so caught up in our traditions and saints and rituals that we almost border on Voodoo. Don't get me wrong, I love being Catholic, and there is this urban legend about burying a St. Joseph statue in your yard if you are trying to sell a house. Yesterday, I decided that St. Joseph is our only hope.
So I googled "Catholic Gift Shop" for almost an hour (where have they all gone?) before I came across one in Euclid called Our Lady of Lourdes. Perfect. I even called to ask about St. Joseph. "Why? You want to bury him?" grumbled the old voice on the other end of the phone. When I said yes, she replied, "We got him."

So I loaded my baby and my agnostic husband into the car to travel to Our Lady of Lourdes. The map quest directions were wrong, and just as we were about to get frustrated, the large Catholic convent/school/church/gift shop appeared out of nowhere. My husband even said, "I now believe in miracles."

We rang the bell and listened to some shuffling on the other side of the door. A tiny woman dressed in white robes opened the door and it looked like it took all of her strength. I have to digress here...I love nuns. I love being around nuns, I want a nun to live in my house, I loved being taught by nuns...all because I am jealous of their quiet, contemplative lifestyle. I know, I could have chosen this as a life path, but there was this guy, I fell in love, blah blah blah.

I told the cute nun about my St. Joseph need. She muttered about the gift shop being closed because of vespers, but disappeared and returned with a boxed statue of St. Joseph for $5.95. My husband handed over $6.00, and we were about to leave when another cute nun appeared from around the corner. I think my daughter's chirping piqued her curiosity. When cute nun #2 saw our St. Joseph, she said, "Oh, you are trying to sell your house, I have a St. Joseph for you," and disappeared. She returned with a smaller version of the statue we just purchased and said, "This should do it! Bury him in the corner of your yard, facing the street. Isn't he beautiful?" I nodded, but asked "Is it true that I have to bury him upside down? I have heard this..." Cute nun #2 laughed, "What? Why make him uncomfortable? You are asking him for a favor, after all!"
I love being Catholic.
So home we went, with two St. Josephs. One to bury and one for my daughter to play with the whole way home.

OK Joe...you are now buried in the corner of our yard. Sell, man, Sell!

Carefully Kept

I recently attended a perfect backyard wedding of a friend (Madame X) and this was one of the readings that was used during the ceremony:
An excerpt from The Velveteen Rabbit by Margery Williams.
"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"
"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."
"Does it hurt?" asked the Rabbit.
"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."
"Does it happen all at once, like being wound up," he asked, "or bit by bit?"
"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

Lately I feel that I have to be very carefully kept. This disappoints me. I don't know where it is coming from. It is a sort of nonspecific fragility. Is it motherhood and all of the worries and work that comes with it? Is it that there has been a three-year rift in my husband's family that has blasted me so far out of my peace zone that I can only sleep about 10 hours a week? Is it that I am a stay-at-home and work-at-home person and I don't have much adult contact? Who knows. I have already said that I don't like to investigate my psyche too much, but I have to say again I feel really disappointed my new "sharp edges." I think of the people like Snickollet who is a mother of one-year-old twins and is doing an amazing job even though she lost her husband to cancer in April. I think of the family that sits in front of me at church who have three special- needs children, and they manage to show up every week looking thankful and rested. I don't think I am doing a very good job at this living thing. I can think of the countless times I have been patted on the shoulder while someone says, "God only gives us what we can handle."
That makes me mad. I want to be able to handle things. Huge things. I feel like the kid in the back of the classroom, waving my hand wildly, and shouting, "Pick me! Pick me! I can do it!" I want to give big things to the world and not have to be so carefully kept. I want to be so real that my hair gets loved off and I get very shabby.
Last night, during my insomnia (er...in-law-problem-night-sweats), I realized that I was not ready for the big things. I have to be a soldier of the small things until I can make it all fit together. This means that I hold the door for the woman who orders the complicated cup of coffee. This means that I say "how is your day today?" to the crabby check-out lady at the store. This means I smile every time I can remember to smile. This means that I am present for my daughter when she holds up a book that we had just read 100 times. This means that I remember to touch the wilting hands of the hospice patients that I visit every Sunday. Most of all, this means that I listen more and talk less.
A soldier of small things. I can do this. After I decided this during the middle of last night, I practiced a breathing technique that I learned from one of my masters, Pema Chodron: You breathe in all of the pain and suffering of the world and then you breathe out relief for the world. This is a form of meditation, a form of prayer that centers me. I think I did three of these breaths before I fell blissfully asleep.

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."