Sunday, May 12, 2013

Silver Linings

I know this isn't my first post about silver linings, but I just got done watching the movie Silver Linings Playbook with my husband, and there are a few things that need to be said.

When you watch the interviews and extras after the movie, it becomes clear that part of the reason the movie was so powerful and connectingly real is because the people who made the film had a driving need to tell an honest, raw story about struggling with mental illness.  It had to have the gritty truth about the yelling and the delusions and the heartache of family members who just don't know how to help, but it also had to have the hope too.  The promise that with hard work and perseverance we can stop hiding the truth of our weakness from ourselves and start working on getting better.  

It was a concept that resonated with me powerfully because I have lived that struggle.  And make no mistake, it is a war.  A war which we can't even begin to start fighting until we have the strength to even realize we're on a battlefield, and that the stakes can be life or death serious.  So much of mental illness begins with denial and rationalization and while we have that, we can't have healing.  The filmmakers and Mr. Kennedy and Mehmet Oz pointed out that until we have dialog about mental illness we will never have acceptance, understanding, and fair treatment.  Too many people suffer in shame, feeling alone, when what they need most to survive and overcome is to connect with someone.  To make that connection, we have to admit that we need it, and that's very hard to do.  It starts with doing away with secrets and being honest.

I never finished college.  After a stellar high school career of extra curricular activities, a 4.14 GPA and Advanced Placement courses under my belt, I dropped out of college in my sophomore year with a failing GPA, a lost scholarship, and a huge weight of self disappointment.  My husband likes to explain, if people ask, that I dropped out of school when I got sick with mono, and that's the kinder way to tell it, but it's not the honest way.  The truth is I was already plummeting over that cliff with my foot on the gas pedal, and getting mono was just the last thing, like taking off of my seat belt on the way down.  Getting knocked on my ass by an illness that sucked the strength out of me allowed me to give in and acknowledge that I was overwhelmed by depression and didn't know how to get back up again.

I came home from college after reaching out to a suicide hotline in my dorm room all alone.  I didn't want to kill myself, I told them, and that was the truth, but I was having visions of myself dying in a variety of ways, throughout the day, every day, and I was afraid.  How many times can you watch a movie in your head where you die, either by your own hand or by some tragic accident, before you someday discover you're actually living out the movie?  Er, dying out the movie I guess.  Either way I didn't want to wait and find out.   I needed help.  I was given a choice between having myself committed or trusting myself to stay "on the outside" but get the treatment I needed.  I chose to talk to my parents and go home for treatment.

In 28 Days, Sandra Bullock's character is made to wear a sign that says something like, "Confront me if I do not ask for help."  Boy, there's another movie that I could identify with.  Asking for help is so damned hard, and I needed it badly.  But I took the first step, admitting it (how could I not, with my world falling apart around me?), and that was the beginning of getting better.  Like anything else I've faced, I learned about it in order to fight it.  So I came to realize that I had been depressed a lot longer than just those couple of college years.  All those growing up years in family counseling had not just been for my other family members, because I was not the only happy exception to the dysfunction that I had painted myself to be in my head.  (I don't need counseling because I'm so happy and successful!  I mean come on, have you seen my report card?  Plus I smile a lot and have plenty of friends, so I'm fine, but I'll sit here and listen if it helps the others.)  Right.  We were in there because we all needed it.

I did even more therapy when I got home from giving up on school.  Group therapy, and individual therapy.  And I took the medications that made you feel listless and sleepy and killed your sex drive but also helped keep you from snapping at people over the tiniest (nonexistent) provocations and elevated your brain chemicals enough to try to take control of your thoughts and stop thinking the ones about death.  I wrote a lot, and I listened to a lot of music, and I studied the patterns that revealed where my depression had been hiding and covering itself up and I learned how to change them.

When I was ready, I stopped the therapy.  I stopped the medications.  And I moved on.  I had embarked on a new adventure with a new love, in a new town, with a new job.  I would say I am a successfully recovered  mental illness patient, not because I have always been happy since then, because I have certainly had down times.  But I have recognized the early warning signs, and turned it around every time it tried to come back.  And I know now that it doesn't have to be a secret I don't like to talk about. 

I talked to my husband tonight about how personally I related to Silver Linings Playbook.  This was not news to him, of course.  I may not have told everyone else my mental history, but I have no secrets from him.  Hell, he was the biggest strand in the lifeline that pulled me up from the bottom of that cliff.  He has a way of spinning things so they don't get too darkly serious, so he jokingly asked if I related to the movie because I'd taken dance classes.  I told him no, not dancing, but there was this one time I took a modeling class with a friend, where we strutted around on a wooden floor in a dance studio, beside a mirrored wall, wearing high heels.  It was exactly the kind of risque, adventurous situation my friend was so good at getting me into, where I was terrified and thrilled all at the same time.  Twenty years have gone by and I have never told her this, but I will say it now:  those adventures we had, where I had to come out of my shell, even if only for an hour or two, I have carried with me my entire life, and I remember them when I need the courage to be something more than just a wallflower, when I need to use my voice or stand out.  Like now, writing this.  Thanks S.G.G.  I love you.

This turned out to be more than just a few things about silver linings, but the point is this:  mental illness should not be something that we hide from or cover up.  And it is definitely something that can be beaten.  Like everything else in this blog, I hope people read this and realize they aren't alone, and see the beautiful possibilities they have.  Whatever it is you face, you have within you so much potential, so much promise, if you just grab it and refuse to let go.  Your silver linings are waiting.

Saturday, May 11, 2013

Still Got It

Today, before the crowds that usually come with Mother's Day, we went out to breakfast at a restaurant we've been meaning to try for a while.  I have to very carefully watch what I eat ever since I had my gallbladder out.  I have a tendency to get very, very ill if I eat too much of foods too rich in fat.  So I had a half-size portion of biscuits and gravy with a couple of eggs and breakfast potatoes, and didn't finish it.  But it was delicious.  The kids got nice and hyper off their choices of french toast or chocolate chip pancakes, and today is a beautiful cool, sunny day, so I decided we should all go to the park after breakfast and work off a bit of those yummy calories.  And by work, I mean play.

We brought my manual wheelchair and my canes into the park.  I knew I wanted to take advantage of the wide open flat spaces to do a little bit of walking.  But first I let breakfast settle a bit while I sat in the shade to watch the kids, wrapped in a warm fleece blanket.  Ever since the nerve loss in my skin I get cold or hot very easily, so I was quite chilly in the shade.  I'd go sit in the sun to warm up but my diabetes medication makes me very sensitive to the sun, and burn very quickly.  Always so many complications to manage!  But we manage them just fine.

My hubby and I watched the kids play and climb on the playground equipment for a while, and then watched them run around through the cute little buildings of the miniature town inside the park.  Then I felt like it was time to walk.  When I'm trapped in the house or only have the carport to move around in, I can only walk short distances, a few feet at a time.  So today at the park I wanted to find out if I still had what it takes to put some serious distance on these legs.  For safety, I had my husband walk behind me with the wheelchair while I walked with my canes, in case I needed to quickly sit down to prevent a knee from buckling.  

It felt great to stretch my legs and walk.  I'm so tired of being cooped up in my corner of the living room, with hardly anywhere to move because the furniture I need to have near my bed i.e. commode effectively traps me at the side of my bed with no easy, safe access to the other parts of the living room.  So today I wanted to walk far.  I walked a long section of sidewalk, turned right, walked up a very slight upward incline, turned around, walked back down, and walked the whole long sidewalk back to where we started, before I finally sat down.  As we got to the end I was quite tired, and breathing slightly heavier than normal, but thrilled because I knew I had walked pretty far.  

Hubby congratulated me on a good walk and I laughed a little and said, "Now walk it again and count, please!"  So while I rested in the wheelchair and caught my breath, he paced the path we had just taken, and came back to me.

"Guess!" he said, grinning.  

"Hmmm... 150?"  He shook his head with his thumb up in the air, urging me to guess higher.  My eyebrows perked up.  "200?"  Again his thumb waggled upward.  "250??" I asked, fairly surprised.  

His thumb jerked up again.  I couldn't believe it.  "Whoa... a lot more, or a little more?"

His grin got bigger.  "A bit more."

"275?" I asked, not really expecting it to be that much.

"Close.  280 feet, babe.  Way to go!"

If I wasn't sitting down you could have knocked me over.  I don't recall walking that far without stopping to rest even when I was in therapy several times a week.  That was the kind of number I saw when you added up several shorter walking stints with rests in between them.  I had been so afraid that being penned in and not going to therapy for regular exercise to push my muscles to their limits would have resulted in a huge backslide in my capabilities.  But clearly it has not.  What few exercises and stretches I manage at my beside are obviously helping maintain my legs.  

A year ago this month I took my first six steps in the parallel bars at the rehab hospital.  They were the first steps I had taken in five months of recovering from what cancer did to my spinal cord.   This weekend we are celebrating that I am home with my children, that I can walk at the park with them, that I am so lucky to love and hug them every day.  It is a happy Mother's Day, indeed.

Thursday, May 9, 2013

Guest Author: Caring For a Mesothelioma Survivor

Please welcome guest author Cameron Von St. James, who joins us today with this uplifting article about his role as a caregiver, his wife's triumph over mesothelioma, and making the most of life's challenges.


My Experience in Being a Caregiver Changed My Life

On November 21st of 2005, my wife Heather and I were given the shock of our lives when our doctor told us that Heather had malignant pleural mesothelioma.  She had not been feeling well for a while and we had just assumed it was because she was recovering from having our daughter, Lily just a few months earlier.  But when things did not improve, that is when we went to the doctor and were given this frightening news.  When we were told about the mesothelioma, I realized how serious this type of cancer was and I immediately adopted the role as Heather’s caregiver.

Through my experience of being a caregiver, I learned I was able to carry another person's burdens.  A caregiver must be strong, efficient, and capable, while also putting his own feelings and worries to the side.  I had a few times where everything felt like chaos and I gave into worry and just collapsed and cried.  I quickly pulled myself together because Heather had enough problems to worry about without me breaking down on her.  We were so blessed to have so many great family members and members of the community who offered wonderful support to us during the time Heather was fighting for her life.

Of the three choices for treatment given to us by our doctor, we chose to take Heather to see an experienced medical professional in Boston who worked regularly with mesothelioma patients.  When our doctor explained mesothelioma to us, I could see the terror and concern in Heather’s eyes.  I told the doctor, “Get us to Boston!”  We did not have any time to waste in getting Heather started on her rounds of treatment to defeat mesothelioma.

Several years have passed since we learned of Heather's mesothelioma diagnosis. I will never forget how difficult it was to make it through those years.  Heather is now in full remission and has remained cancer free to this day.  I owe so much to the many people who stepped up to help us out in our time of need.

If I had to give one piece of advice to other caregivers in a similar position, it would be to accept every offer of help that comes your way, and don’t be too proud or afraid to ask for it.  This will likely be the most difficult challenge you’ll ever face, so there is no reason for you to face it alone.  Use the resources available to you and do your best to stay strong.

Two years later, I was able to go back to school to study Information Technology.  My time as a caregiver gave me the strength and the courage to pursue this dream.  I graduated with honors and even gave the graduation speech.  I told my fellow graduates about all the lessons I had learned while caring for my wife.  I told them what my wife had showed me – that within each of us is an incredible strength that can allow us to accomplish unbelievable things.  I hope that by sharing our story, we can help inspire others in their own battles with cancer today. 

Thank you for sharing your story with us, Cameron.  We fervently hope that you and your family continue to thrive and inspire cancer warriors for many years to come!   

You can read more of their journey at their blogs:  Cameron and Heather

Tuesday, May 7, 2013

Big, and Strong

I just read Why I Don't Diet - An Ode to My Father by Tiffany at More Cabaret.  She describes the destructive pursuit of thinness that diminished her father from the almost legendary giant he once was.  I think about this a lot.  I, too, have allowed myself to be taught that my form is not healthy, not small enough, takes up too much space.  And it is true that some aspects of my body were unhealthy, such as my high triglycerides, but my blood pressure has always been good and I had always been strong.  My health problems were not universally size related and would not all be fixed by simply getting smaller.

Despite understanding that I was not automatically unhealthy because of my size, I still rejected it as an acceptable way to look.  I loved being tall and had no wish to be petite, but I wished to be lean, sinuous, even willowy.  Without understanding what it would have cost, I would have traded my strength for slender elegance.  Luckily, I wasn't offered that deal.  I am far from elegant, but that's okay with me now.

I am still learning, through my husband's eyes, to recognize that this largeness I occupy can be beautiful and attractive.  It has always been such a struggle to accept that someone can find me sexy, without adding that little "because he already loves me" at the end of the thought.  But I work on it, because I don't want my daughters to think I'm not beautiful, to think that I myself don't think I'm beautiful.  

Perhaps what I've gone through these past couple of years have made this a little easier for me.  Of course there were times I bitterly complained that if I were only smaller, it wouldn't take so much help to move me, so much equipment to help me rehabilitate my body.  There's nothing like being lifted in a crane to point out to you that no two nurses, male or female, can pick you up.  

But with my size came my strength.  Every once in a while I realize, somewhat startled, that if I was not the size I was at the beginning of this cancer/spinal cord injury mess, what would be left of me now?  My legs wasted considerably when I was in the hospital, it was amazing how fast the muscle fled from beneath my skin.  My thighs were thinner, my calves much thinner.  And yet they didn't look any more appealing to me.  Without my strength, my muscles, they didn't look sexier because they were skinny.  They looked puny, old, and alien, like they didn't belong to my great big body that had always been strong.  

The tale of Tiffany's father is a sad one, but the fact that his daughter has not embraced his tragic thinking is an inspiring, reaffirming high note in this story.  I want to reject the notion that I should be less as confidently as she does.

Wednesday, May 1, 2013

Very Important Lessons

Today's Very Important Lessons:

1.  Not everything should be blogged.  Written, sure, but not shared.  Make every effort to recognize this before you click Publish.  I have, which is why you are reading this post, and not the one I wrote thirty minutes ago.

2.  Pepto Bismol is not safe to take with Warfarin.  It is a Class 2 interaction.  Bad ju-ju.  Me:  "Will it raise or lower my INR?"  Pharmacist:  "It could make you bleed a lot, a lot more easily."  Definite no-no.  After checking for interactions, pharmacy recommended I take OTC Zantac for my heartburn.

3.  Zantac is not Xanax.  Make very certain your husband understands this before he goes to the store for you.  Luckily for him, one is readily available on store shelves, and one is not.

4.  Yes, it absolutely CAN and WILL go from Sunny 86F to Thunderstorm 54F to Snow 27F in less than a 30hr period.