the tangible.

It has been nearly a year since I have added to this blog.  Mostly it is because while I think of mom all of the time, I don't often have things that I feel comfortable sharing.  It is very true for me that as the months and years go by since she passed, the seriously emotional moments fade and I get into a regular routine of thinking of her, honoring her, dreaming about her, and carrying on with my day-to-day life.  Recently, however, Dan and I made a big step (ok several).  We graduated school (me medical school, him residency), we got married (yay!!) and we began a move to San Antonio, TX.  I knew the day would come when I would pack up my things and leave mid-Missouri, but I wasn't prepared for everything that this entailed.  Are we ever?

When mom passed away, all of her things were boxed up and put into storage.  As part of my compartmentalization/survival-mode of medical school, I chose not to go through any of it.  I just allowed it to be stored - for better or worse.  This has been looming over my head for the past 2 years.  I knew that I would someday have to face the 5 storage crates packed to the brim with all of my mother's belongings.

A few weeks before moving to San Antonio, I set out to go through everything and decide what to take and what to leave, knowing that I may never be living in mid-Missouri again.  What I wasn't quite prepared for was the amount of stuff mom accumulated.  She was, by accident or by choice, the family historian of sorts.  We have literally 1000's of pictures dating as far back as the 1880's from family members in Canada.  We also have letters, cards, slides, books and other keepsakes from the same time period.  It just didn't feel right to be the one to decide the fate of these memories so I have taken it upon myself to scan them and digitize them and share them with the entire family... that should keep me busy while in Texas :).

I was amazed at how easily I was able to get rid of most of her clothes and other things (furniture, linens, etc).  I was also not particularly drawn to keeping my own things such as awards, artwork, notes from friends, clothes.  It was the small things... grocery lists in her handwriting, pictures of her taken when she wasn't paying attention, her perfume... her scarves.  When I touched these things, it was as if I were closer to her.  Closer than I have been since she passed away.  It is hard to explain, but picking up a piece of paper with HER handwriting on it made me feel as though we were connected again.  Needless to say, I saved a few of the strange things such as old Yahtzee score cards that we both wrote on, and lists and cards she wrote to me.  These are some of the small things that I will touch, hold, and remember her by.

I learned several things from this adventure with my past.  Here are just a few:

1.) In my life Dan and I will strive not to hold on to as many "things" as she did.  It is really hard as a child to know what to do with things your parents leave you.  In her case, she didn't know these were things she would be leaving.  Unfortunately, Alzheimer's doesn't afford you the clarity to throw things out.  Instead, it leads to hoarding and holding on to tangible memories, almost as if when the memories you can touch are gone the ones in your head will cease to exist as well.

2.) Be kind to yourself when you are going through your parent's things.  Take breaks, embrace the memories, and let yourself feel what you feel.  I was surprised which things really triggered emotion in me and which things didn't.  Remember that most of the tangible things are just that, things.  The memories you have from those things are forever.  Take a picture of items that you don't want to forget, and then let them go.

3.) For me it was important to pick one of mom's many signature clothing items that I would keep and cherish as a constant memory of her.  For those who knew her, you remember her style and flair.  She was always classy and well put together.  She wore the most beautiful suits to work every day.  But the most vivid memory I have of my mom was getting ready in the mornings.  She would stand in the mirror and put on her make-up and I would watch so closely.  The way she put blush on her beautifully high cheekbones.  The way she put on just the right amount of eye shadow.  She always finished off her routine with a dab of her Gucci perfume... first both wrists, then her neck.  Then she would wrap a beautiful scarf around her neck and tie it just so.  She had a silk scarf to match every outfit... literally.  I found the box of her scarves when I was unpacking.  I knew in an instant that THIS was the thing that I wanted to take with me.  THE tangible memory that would be mine to carry on (if I can somehow pull off her look).  I took one out and smelled it... and I swear... I could still smell the faintest scent of her Gucci perfume.

This is the scarf collection - a picture doesn't do it justice.

My compass.

For the past few weeks I have been feeling a little more tired than usual.  A little slower in my step.  A little less eager to crawl out of bed.  Nothing serious, nothing debilitating, just constant.  It makes a lot of sense when you think about the decisions that are being made right now.  My friends and I are deciding just where we want to be for the next 3-5 years (residency).  

We are compiling our lives onto sheets of paper and sending them to the people we admire most and hoping, just hoping, that they say they admire us too.  Enough to write us a stellar letter of recommendation.  Enough to say that they would love to keep us as their own resident if they could.

We are pouring our hopes and dreams into a personal statement.  ONE PAGE that is supposed to outline who we want to be as a physician.  What we think we can contribute to a program if they choose us.  What we want to contribute to the field of medicine.

And then we seal it up, kiss it for good luck, send it into cyberspace... and we wait...

I spent some time trying to flesh out just why this was weighing on me more than it has in the past.  I have gone through this process several times before.  Undergrad applications, grad school applications, scholarship applications, internship applications, med school applications.  Sheesh... it should be like second nature to me now, right?  But this time is different.

I don't have my compass.

This morning it became clear to me, actually after watching this video (watch the first 4 mins) that my point B has been taken away.  This is actually pretty common in life, maybe best visualized in nature.  I saw it when I was watching baby birds on what seemed to be a suicide mission in my backyard this summer.  Mom says it's time (chirps it's time?) and babies start jumping.  I kind of wanted to catch them - their wings just didn't seem ready.  But they didn't come back, and the neighborhood cats didn't seem any fatter, so I am gonna call it a win for those baby birds.  Point being - we all start making decisions and moving forward without our parents.  But that isn't what is hard for me.  It is not having the option.

My mom was my compass.  My guide down the rough and bumpy road of life.  She had literally seen it all, the hardest things that life can throw at a person, and she still faced each day with a twinkle in her eye and a smile on her face.  She pushed me.  She gave me hope and she told me not to give up.  I have never gone through an application process without her.  I have never faced these difficult decisions without her.

So here I stand, on the edge of my nest.  My wings feel a little bit weak.  My heart is beating a little bit fast.  But in the back of my mind I just have to play her words of encouragement from the past on repeat.  I have to remember that she has loaded my toolbox with skills that didn't leave when she did.

Most importantly, I have to know that when I reach into my pocket, I will find my compass.

It has been there all along.

Crossfit saved me.

This morning I woke up and felt like crap.  I wanted to stay in bed, bring the blankets to my face, and just sink deeply into the mattress until I disappeared.  The majority of this feeling was because I stayed up way past my bedtime (Roots 'n' Blues festival... totally worth it).  Regardless, it isn't far from the feeling I have felt many times before, and it reminded me of how far I have come.

For the last few years I have felt that way far more than I haven't.  Sometimes in the afternoon or evening when I would get home from work.  Sometimes for entire weekends when I knew I should be doing something productive.  Really, ever since my mom started getting sicker.  There is a lack of motivation that comes with despair.  When you are faced with a situation that is truly insurmountable, TRULY insurmountable, your bed and sleep seem to be the only solution.  At least for me.

When mom died in February, I truly felt at times as if my body was just wasting away with her.  I knew there was so much that I needed to accomplish but I just couldn't bring myself to do it.  I felt despair, exhaustion, anger... the entire spectrum of feelings.  I still feel that way a lot of times.  I have spent time over the past 7 months since she died thinking that I should go to therapy, that a counselor might be the solution to the "normal bereavement" associated with losing someone.  I would call people, do the "interview" that comes with the first time meeting a counselor.  None of it felt right.

Then I found Crossfit.  Sure I have been active over the months since mom died.  It was something that I wanted to try to do to keep me sane while studying for boards.  Exercise has always made me feel good.  But Crossfit has changed my life.  I realize with this post that I am running the risk of exposing the Kool-Aid stain on my upper lip... yes, I have chugged the Crossfit Kool-Aid.  I'm still not "paleo" but I have begun the steady trend toward cutting out gluten.  My aunt Molly would be proud.

What is Crossfit?  I think this video says it well:

This month marks the first time that I literally forgot to be sad on the anniversary of mom's death.  Instead, I was at my local "box" working out with some of the coolest, toughest, and funnest people I have had the pleasure of getting to know.

This morning instead of pulling the covers over my head and letting the day take over, I climbed out of bed and made myself go to Crossfit.  I still feel like crap today... but that is again because I'm not 21 anymore.  What I don't feel is sad, depressed, or lonely.  I have found the best therapy for me and I have learned through Crossfit that there are no bounds to my mental, physical, and emotional strength.

Waves.

Mom passed away on February 12, 2012.  Since then I haven't been able to blog, I haven't really been able to take the time to stop and think about things.  That is until recently.  I have decided to take a short period of time off of medical school to process the loss of mom.  Four months late, but still equally cleansing.

I kayaked in La Jolla, California this week.  My uncle Ted and I try to do fun activities like this whenever I come out to see he and my aunt Molly.  As we navigated the waves in and out of the shore it made me start to think.  Grief is a lot like the waves on the ocean.  To which you say to me "that isn't an original thought at all, Mariah."  This analogy has certainly been made many times in the past.  But what triggered this thought to me was not the ebb and flow of waves, the coming and going of emotion, but rather the tricky way that ocean waves behave.  A wave that looks huge and terrifying can be completely manageable, while a wave that seems silly enough to turn my back to can knock me flat and send water rushing up my nose.  I would welcome a peaceful ebb and flow over the erratic and unpredictable nature of grief.

I think of mom all of the time.  Today it was during a Zumba class that I took with my aunt Molly.  We were dancing in front of a mirror to Latin songs while the instructor lead us in moves that my body just was not made to do.  I thought of the hours and hours that mom and I would spend in our living room doing Richard Simmons Sweatin' to the Oldies.  I imagined that she would absolutely LOVE this class and we would be laughing our heads off every second of the way.  This is one of those manageable waves, the ones that I can dig in and dive through and feel ok on the other side.

The other kind of waves, those hit me when I least expect it.  I am learning now to embrace them and take them on as they come.  I am confident she gave me the strength I need to tackle anything that comes my way whether I feel prepared or not.  I guess most importantly I am learning that every crappy wave that hits and sends me spinning is a chance to stop, think of her, and remember just how glad I am to have had the time I did with her.  

The medically-minded caregiver.

I am inspired today by a professor of mine who has created an informational and open blog about his cancer diagnosis.  He is using it as a teachable moment, and by doing so has touched people all over the world.  You can check out his blog at: http://dbocancerjourney.blogspot.com/  to learn more about his journey.

I don't anticipate reaching nearly that many, but hopefully some of my closer friends who are medical professionals can take note of this blog post for when they are caring for their own family members.  There is a huge burden of expectation placed on the medical professional who is also a family member of an ill person.  In my case, the burden is primarily self-imposed, but it is also evident in interactions with mom's care team.  As a medical student, I am constantly afraid I am missing something medically with my mom.  I feel this way because I am the person most present in her life, and I know (a little) about the human body and the normals and abnormals of disease.  It is probably also because she is such a unique case (her age, her presentation, her progression).  If her pupils look funny or her gait has changed, I am immediately trying to figure out what has gone wrong.  It is a painful and taxing process.  I am sure this is the case for anyone who is in the medical field and simultaneously caring for a loved one.  You know about the mistakes made everyday in medicine.  You know all too well that doctors are incredibly fallible.  You want to protect your family member from medical errors, polypharmacy, neglect, and misdiagnoses.

For me, I am always worried we have missed something big.  That there is an underlying process causing mom's illness that could have been stopped.  That when we do a post-mortem on her we will find that if we had only done _____ test we would have been able to save her memory, that I would have had her for 20 or 30 more years.  It is a painful burden to feel this way, but I am certain that I am not alone in this feeling.

Probably the most important piece of advice I have ever gotten was from a physician friend when I was talking to her about my feeling a loss of control in mom's care.  I sat down with her and was beside myself with grief.  I explained my fears that mom's care team was missing something.  That because she had been moved so much and had been passed off by so many, I was certain she was falling through the cracks.  I told her that I felt like it was my fault that this was happening because I am mom's advocate, her constant in this fluctuating process.

This was when she gave me the very best advice I could have heard at the time: "You can't do everything, Mariah.  When you are the family member of a sick person you must check your medical degree at the door and be the family member.  You cannot try to figure everything out because in the process you will drive yourself crazy.  All you can do is equip your mom with the very best medical team, and step back and TRUST them.  It is NOT your fault if something goes wrong in her medical care, it is NOT your responsibility to catch medical errors, and you can't control everything."

Medicine encourages perfection.  It pulls in people who won't settle for anything but the very, very best. Combine that with the love of a family member, and even more importantly the love of a parent, and that perfectionism runs rampant.  It is important to give to your loved ones, to be there for them, to support them.  I guess what I am learning now is that it is also important to let go and trust others.  That doesn't mean being blind to blatant mistakes.  I will always be mom's biggest advocate and will certainly fight for her to continue to have the very best care.  However, I am working diligently to give up the reigns a little bit.  To be her daughter that just happens to be a medical student, rather than a medical professional constantly on the watch when I come to see her.

Because when I come wearing my "medical professional" hat, I miss moments like this:

Innocence.

Today has been a rough day, and I come off of the heels of a rough weekend, and a rough several weeks.  Earlier today, while riding in the car, I stared blankly out of the window – deep in thought.  As my eyes drifted back into focus I caught glimpse of a little girl staring back at me out of the window of a school bus.  She stuck out her tongue and made a ridiculous face at me.  I just stared back blankly.

I often envy others who seem free from cares.  Typically this is in the context of studying for medical school.  I will gaze out of the window of a coffee shop and see a group of college students trekking down the street just having a blast, not a care in the world.  I am embarrassed to admit it, but when I am really in the thick of things at school I want to wring their necks.  I envy their freedom to do what they want and their lack of responsibility.  Of course I chose my path, and I realize how irrational these thoughts are, but it is amazing what 12 hours of straight coffee and studying will do to even the sanest person (not that I am sane).

Today this little girl made me feel something entirely different.  She made me wish for my innocence again.  She made me want to forget how terribly hard life can be.  I don’t blame children for their innocence.  Rather I want to bottle it up and take a drink when I really feel overwhelmed.  I just wish for the days when I didn’t know how difficult things really are. 

My mom has taken another turn for the worse.  I have watched as the system has continuously failed my family as we try to navigate the ins and outs of her care.  She is a unique patient, I get it, but she is a person nonetheless.  She has a story, a pathway, a tragic plunge into the darkness that has now overtaken her.  She is scared and tired and alone in her mind.  I am left to be her storyteller to anyone who will listen to me. 

The problems I am facing lie with communication, or lack thereof.  Isn’t that always the case?  I feel alone trying to help her survive what seems to be an endless battle with medications, and nurses, and EMTs, and social workers, and probably worst of all, doctors.  It is like the game of telephone that you play when you are young.  The more she is shipped around.   The more people who get involved in her care (more accurately, lack of care) the more the story changes.  In this litigious society we live in, no one wants to take the blame when I catch their mistakes and oversight, and certainly no one wants to seem neglectful.  No one wants to seem too busy to take the time to get to know her, to get to know me.  But very few people have. 

In med school we are taught from physician lecturers to care for the caregiver, to take the burden off of them whenever possible.  Let them know it isn’t their fault, that they shouldn’t feel guilty or sad, and that they aren’t alone. 

Only once in the last several years, yesterday in the ER, did I feel complete support from someone in the healthcare field.  An EMT held me in her arms and just told me how very sorry she was and how hard this all must be.  And I wept.  I wept for the realization from a medical professional that this is just not fair.  I wept to know that SOMEONE noticed just how hard this is and just how scared my mother and I are.  I wept because that sort of embrace should be the norm, not the exception.

I am on a plane right now to California.  I reluctantly left with my mom still in limbo with her care moving forward.  I need this time away to think and reflect.  There is one thing I do know, with loss of innocence comes a gain of perspective, and for me a burning desire to make things right.  My mother’s story will be told and she will be comfortable, safe, and respected if it is the very last thing I do. 

I draw strength.

I draw strength from my mother's smile and the twinkle in her eyes.  As of late, it is not uncommon for both to be absent, but occasionally I catch a glimpse and when I do, I try to capture it on photo.  Today I celebrate the beauty of my mother's smile and the way in which it keeps me going when things seem too hard to handle.  Here are a few photos from the past couple of months:

I think I bored her with all of my photo taking!

Playing it cool.

Sharing kisses.

This photo is particularly meaningful.  My mom hasn't cried with me in months.  She hasn't really registered who I am much lately.  But last Friday, she knew who I was.  She looked me in the eyes, and we both cried together.  She told me she loved me to the sky and back.