#MoreThan Part I

This is the first of a 3-part series. The theme is derived from a campaign currently being run by Patientslikeme entitled #MoreThan (please learn all about it here). I thank Patientslikeme for allowing me to take part in the campaign, and I hope these posts might prove helpful.

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When asked what defines us, we will often respond with our professions, our spouses, our children.  We will think of our very favorite hobbies, or our faith, and fit that into the definition as well.

For people with chronic illness, that illness quickly becomes the only definition.  We can't remember ourselves except for how it relates to the illness. It becomes a challenge to remember our lives before the condition, aside from the condition.  We forget who we are, or who we were before the condition came along.

We need to remember that we are more than that one thing in our lives, that the illness/condition/disease/whatever-you-want-to-call-it is not the be all and end all of our lives.  I have bipolar disorder, I have PTSD, but they will not define me completely.  That is a job in and of itself, to keep these illnesses from defining me, but there are things I can work with, parts of my life I can enjoy, that will keep me remembering I am more than these things.

For me, I have three big "loves" in my life: family, the English language, and music. They all help keep me alive, happy, and above the bipolar/PTSD quagmire.  In this post, I want to talk about the English language.

Since I was a very small child, words have meant so much to me.  There's an old family story that when I was about 2 years old, I stood up in my crib and shouted an entire monologue from "Pollyanna" (Death comes unexpectedly!) because my parents had played the movie's album for me, for the songs, and I couldn't help but make a racket, shouting the newest words I had learned. (My grandfather, who was babysitting me, was terrified at this little person yelling at the top of her lungs!  Sorry, Pa.)  I love words as though each was a friend, and I take great solace in these companions.

My parents taught me to read when I was pretty young, 3 years old, and I have never stopped reading.  I love it so very much.  Words create sentences for stories, and lines for verse, lyrics for songs.  I love reading every kind of anything you can think of.

I love books.  I love the way they look in a room or a bag, I love the way they smell (the older the better), and I love finishing them and starting new ones.  Books have been some of my greatest companions, in some of my best and worst moments.  I can remember climbing the hilly roads near my house as a kid, my head buried in "Wuthering Heights".  I remember sitting at my job at General Cinemas reading Tennyson when it was dead and I could sneak a book on the ticket counter. When I was in the hospital for a manic episode, one of my dearest friends brought me books because she knew they were better than any candy or flowers.  Books make the world feel just a bit more friendly and civilized.  Paulie likes to joke that whenever we pass a bookstore, I must go inside.  Now, I do manage to stop myself if we're on a schedule, but otherwise yes!  We must see it!

When I learned to write in kindergarten, I started keeping journals and notebooks full of my own creations.  I still keep them today.  I usually have 2-3 notebooks going at any given time.  I'm pretty sure it annoys my husband to no end, but he's good to me and doesn't say anything.  Just the physical action of writing on paper calms me.  I write everything down first, if I can, and then it can go in a google doc or a blog post or wherever.

I've published books, newsletters, and games in both children's and adult literature, I keep a regular blog, I've written piles of paper's worth of "things" in my life, I've read hundreds and hundreds and hundreds of books, I've spoken myriads of poems, book excerpts, and lyrics.  The English language and what it means in my life is just one example of how I am #morethan my illnesses.  It brings me through those bad times and enhances the good. I feel so lucky to have this as a part of my life, and will continue to make it a core part of me. 

Science Fiction Double Feature

So much has happened, I hardly know where to start. In the last 6 weeks, I:

• gave a presentation on my life with Bipolar Disorder for PLM staff
• rehearsed and sang all of Holy Week
• helped to get a book including some of my work published 
• went to Washington D.C. for a big patient data event where I sang and took part in discussions
• came home to a whirlwind of family gatherings and babysitting
• had a great conversation with a cast about mental illness and the show “Next to Normal”

….all while working my job and trying to live with a really nasty bout of suicidal thoughts and depression clinging to my back like some creature in a horror movie.

My brain tells me that I don't matter, all day and all night. My body won't respond to the medication in the ways anyone thinks it should. It gives me every last side effect, so I know it's doing something, just not what we want it to. All the time, voices say “You're worthless”, “Everyone hates you, especially your husband”, “Your family wishes you'd go away and stop bothering them”, “Just kill yourself”, “Make everyone else's lives easier and die. Then they won't have to deal with this anymore.”

On good days, it's a white noise at the back of my head.

On bad days, it screams so loudly that I need to ask people to repeat themselves; I can't hear them over the noise.  There have been a lot of bad days in the last 4 weeks.

The good news is I have the tools to battle this, even when I think I don't. I tend to forget that I have the tools; that's the depression doing its thing. Then I think the tools don't matter; that's the suicidal thinking doing its thing. But tools exist nonetheless! They come in the form of friends saying hi or checking in, a parent accompanying me to an event, a spouse holding me close when I need it, the “choir family” at church giving me hugs and encouragement.

I need to hold the loving tools close, encased in a toolbox of strength and courage, slung over my shoulder to defeat the creature on my back.

The most important skill that all of these other tools brings to the fore is to KEEP GOING. Even through this latest set of trials, I will continue to kick ass and take names. Even when my disorder tries to suck the will to live from my body, I will keep getting out of bed and getting dressed. I'll keep taking the medication and trying new things. I will push and claw and scratch my way to wellness.

I will play the undaunted warrior.

I will be me.

March 19, 2017

Why am I here?

Like so many, I ask this question nearly daily, and the answer never seems to fully form itself. Am I a witness to the mayhem? Am I doing enough to quiet the fray? Am I a source of bother rather than help? Do I even have the necessary skills to do anything at all?

Today, I am choosing to put my best voice forward, for myself and the world. I sat at Mass this morning and listened hard to the readings. They were a call: a call to me to come to the forefront and speak, but more than that, a call to ACT.

Why am I here?

I am here of my own volition. There are times in my life when I thought "Time to go; I'm done."  There are times when I attempted to end my life. There are times when I wanted to end my life, but sought help instead. I am here because I CHOSE to be. I am seeing more and more now that my life is truly MY CHOICE. God gave me this life again and again, and he gave me the free will to choose to take it up again, even when my brain was encouraging me to refuse.

I have been given and chosen life, and now more than ever, people need to know that they are not alone, that they have choice, that they are called to live their own choices.

March 30th is World Bipolar Day.  In sight of this, I encourage everyone to do as I am doing, in educating themselves about Bipolar Disorder and ALL mental illness. Let's stop being afraid and start a conversation. Let's show people they are not alone in their journey.

Let's speak, act, and show the world why we are here: to love and help each other. 

"Have you ever fired your gun up in the air and gone 'aarrr'?"

"Punch. That. Shit!"

"Fire up the roof...."

"Bring the noise!"

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These lines (all quoted in one of my favorite films; can you name it?) are delightfully metaphorical as well as timely, given the date. You're feeling brave, you have a goal to accomplish, and it's time to go out there and get it done. 

Every year brings joy as well as obstacle...and 2016 made sure it did its duty: my beautiful nieces were born, I gained a brother-in-law as well as a nephew, my bipolar disorder brought me further into the land of mania, I lost my therapist of 11 years, started two novels, gained a piano, lost a few friends, stopped working for a major orchestra, started working for 3 different groups surrounding my mental illness, etc. In short, I seemed to leave one world behind, and have begun to forge my own new one. Thus, I have some goals for the 365 days ahead. 

I am going to learn to play the guitar, as I have wanted to do since I first saw Ms. Ani diFranco blow everyone's minds via "Living in Clip" in 1997. I think 20 years has brought enough life experience and clarity to start that journey, eh? 😉 

I am going to complete some musical projects I've tossed to the back burner for a few journeys of the sun. I dare not speak them aloud, lest they vanish into dust upon utterance. 

I am going to build a website that incorporates my writing, music, and advocacy lives. 

Finally, I am going to complete at least one of the novels I've begun.

Lofty goals? Probably. Impossible goals? Nope. 

“Little hand says it's time to rock ‘n’ roll…”

My Rosa

I am reading a book by Mark Shriver entitled “Pilgrimage”. It's a biography of the current Pope, Francis. In its beginning chapters, Shriver details Pope Francis’ earliest days in the Catholic faith. He was heavily influenced by his grandmother Rosa. She herself was a devout Catholic who taught him to pray and taught him to live and work for the good of others. As I read these pages, I cannot help but think of the Rosa in my own life. Her name is Eileen Dillon. 

Eileen, or “Biggy” to the family, is a devout Catholic. She was born in February of 1917, the third of nine children. In her own words, she had a childhood of “love, prayer, and the beautiful Mass”. She worked tirelessly her entire life, helping her family in all things, and retired in her 80s. She lives in an apartment in Somerville now, and continues to live a life of prayerful observance. 

Eileen became “Big Eileen” when my grandmother named her second child after her big sister (Nana is the ninth of the Dillons). Over the years Eileen became “Big Eileen”, then “Big E”, and by the time I came along in 1979, “Biggy”. Though we are separated in age by 70+ years, our lives together have been far closer. She has become one of my most staunch supporters, but really, helping others is simply a part of her nature. 

Biggy is the woman who hands whatever money she has in her pocketbook to a homeless person on the street, never questioning what it will be spent on. And don't you dare question her! 

Biggy is the woman who finds out a family is in need and gives them everything they could need or want. The only requirement is that they never know where the help came from.

Biggy is the woman who hears that you'd like to go to a certain place, or see a certain thing, or are just feeling down, and she pops you in the car and you're off to that place! (I have personally found myself in NYC and Ireland, just because Biggy heard that I'd never been before.)

But most importantly, Biggy is the woman who believes that God, through intercession by the saints and the Blessed Mother, can heal all wounds: physical, emotional, and spiritual. Her intense devotion, to the Blessed Mother in particular, is something that will always be ingrained in me. 

When I was a little girl, my parents prayed with me every night. Sometimes when Biggy would babysit, we would pray the rosary together. I can't remember who first taught me to say the rosary, but I will never forget the importance and solace of it. My parents, aunts, uncles, and older family each hold a corner of my praying history, but Biggy is a little different than the rest. She explained stories of the visitations by the Blessed Mother in detail. She showed me all the good the Blessed Mother has done on our behalf. She always reminded me to bring my trials and triumphs to her as well as God. She and my Dad taught me about the children at Fatima. Biggy told me about my birth date, the feast day of Our Lady of Mount Carmel, and how important the day is in the family as well as the religious calendar.

When my mental illness began to skyrocket in my 20s, Biggy would write me cards reminding me to continue to pray to the Blessed Mother. She would send medals, Mass cards, and her own wishes for my improved health. In the last 2 years, she has begun to pray to St Therese (The Little Flower) every day for me. She said to me recently “I have great hopes for the Little Flower; she will intercede for you!”. I have begun praying to her as well as my standbys: Our Lady of Mount Carmel and the patron saint of mental health, St. Dymphna. 

Biggy is not a quiet person when it comes to her faith. She will tell you exactly what she thinks and why she thinks it. While we don't always agree, we absolutely respect the right to each other's opinions, and enjoy talking over all things faith & religion. Her faith knows no end, and her fierce devotion creates in her an incredible warrior for Christ. 

I am so grateful to Biggy for her guidance and example. When I am feeling my most desperate, and can't seem to find my way in my prayer and beliefs, I think “How would Biggy handle this?”and push through, begging the Blessed Mother & The Little Flower to give me a hand. 

Biggy and I make each other laugh a lot. When I call her and we chat, I realize that not only do I have a lot of respect & love for her as a great-aunt, I genuinely consider her a friend. She is an incredible confidante to me. She is the kind of woman who gives gives gives, and makes sure she gives you a healthy helping of opinion as well. She is the woman who heard that I loved Thomas Hampson and then brought me to see him play Don Giovanni at the MET, in the front row of course. She is also a person will listen to me and remind me of the good that the Lord can do, if we only stop long enough to take that good in. 

So on this Christmas Eve, I shall say my prayers and send my personal intentions up to my God, Blessed Mother, and saints. And I shall thank them for Biggy, my own Rosa. 

Why Can't We?

I wanted to keep going as if the election didn't affect me. I wanted to just keep loving and living. I wanted to take a page from Anne Frank, and believe the best in people. But that's not what's needed. 

What's needed is stark truth.

Our stock market has closed higher than ever this week, but there is a young child sitting at a rickety table in the middle of a tiny apartment who will not eat this morning before school. 

The leaders of our nation speak of what the United States of America once was, and what it should be, and what it can be, but there is a man who fought valiantly in Vietnam who will sleep on the pavement of Tremont Street tonight. He has nowhere to live, his country has abandoned him, he screams with the torture of PTSD every night, and his addiction to alcohol keeps him out of every hostel and shelter. 

We talk in our comfortable living rooms, CNN blaring, about how the world needs to be a better place, that people need to love each other more, but when someone asked you for a dollar to buy a coffee this morning, you passed by as if they didn't exist, angrily muttering "They'll only spend it on drugs."

My family here in the United States hasn't been here very long, less than 100 years. When they came to this country, people they didn't know lifted them up, gave them a job, turned a blind eye to status or ethnicity long enough for them to make a few dollars and start their citizenship process. My grandfather and his dad slept in the basement of an apartment building in the North End. They could stay there as long as they kept the furnace going. My grandfathers and uncles fought for this country, my grandmothers and aunts suffered great hardship and did their part in keeping our country's economy going; they were factory workers, maids, and secretaries. They worked in factories and scrubbed floors into late life, never asking for a thing except a safe place in which to raise their children. My family taught their children that the United States was an incredible place to live, the very best, and that loyalty to it was of the utmost importance. They fled fascism and dictatorship to be here.  How would they be treated today, in this United States of 2016? Would they be called "micks" and "wops", as easily as the words "spics", "towelheads", and "gooks" escape some lips now? Would they be tormented for wearing mantillas on their heads to attend Mass, as people mock women in hijabs now? Would their heads hang a little lower as people hear them speak in accented voices, and yell at them: "You're in America; speak American!"

I can hear some of you now: "Are we running a country, or a charity?" "Why should I have to help anyone else besides myself?" "Why can't people just pick themselves up without help from others, or from the government?" My answers are we are running a community, of law and of charity, of good things for all.  We should help because our hearts and brains tell us that it is what must be done.  People have different strengths and abilities, and people CAN pick themselves up, but they may sometimes need help.  Help them, and they will one day help you.

I will no longer try to simply wish all things be fair and equal.  I will fight for it.  I will fight for EACH and EVERY person's right to live a life of freedom, a life free from fear, a life where they will have what they need.  I will not just do this with words.  Words are too simple.  I will do this with action, with time, with whatever small amounts of money I can spare, and with a voice that will not be silenced.

As a nation and as a species, we have a duty: to REMEMBER WHERE WE COME FROM, REMEMBER OUR OWN FAMILY HISTORY, and act accordingly.  Many think we've lost, that we are no longer capable.

But why can't we?

November......

I see the gilded mirrors
and feel their glaze spill over me.
The tv flickers, and I spill into its story.
When will the gilding touch my heart?
How shall I justify the flicker of my conscience?