A Little Poetic Musing

Sharing some thoughts in verse(ish).

 

Woman, forest, beautiful woman, woman sitting beneath a tree

Perspective

I sit beneath the Oak

on a breezy summer day –

cloud-puffed sky,

sun through the leaves,

lichen growing on the rain dark tree –

all beautiful to me.

If I’m sitting in a wheelchair,

is the beauty of the moment less?

…Or is it more?

© 2018 Christina Chase


Photo by Larm Rmah on Unsplash

As He’s Brushing My Teeth

As my father was brushing my teeth one night, I started thinking about what this very act does to him… or for him.

Toothbrush

When my motorneuron disease weakened me to the point where I couldn’t brush my own teeth anymore, I found the ordeal of having someone else move a brush in and out of my mouth, well… an ordeal.  And it hasn’t been a picnic for my dad, either.  My mother seriously dislikes the job, as I know that I would, too.  That’s okay, she does other things very well.  Anyway, this empathetic kind of thing that requires concentration, patience, and precision is better suited for my dad’s skill set.  But, I know that my father does not like, or should I say, particularly enjoy, this chore.  It’s a chore.

On this particular night, the burden that is my daily care was weighing heavily upon me.  It’s easy to feel a little guilty when you have to depend so much on other people.  And I was thinking that my father would be better off if he didn’t have to do this chore, night after night with little variation and very rare respites, better off if he didn’t have to do it then, at that moment.  Of course, he would rather that I be able to do it for myself – for my sake – but, because I can’t, he says that he is glad to do it for me.  He says this about all of the many, many, many things that he does for me day in and day out.

Yes, of course he feels that way.  He’s a good dad.  He’s a good man.  But – for his sake – I was thinking that someone else should be doing this, someone who hires herself out as a home health aide, for example, like the ones that take on some of my daily care for a few hours, four days a week.  Trying to get more help has proven very difficult.  But, if I was able to arrange some kind of full-time care from professionals, then my father would have a little more of what he deserves – a normal, ordinary way of living.

That night, however, as my dad was brushing my teeth, I began to wonder… (and it could’ve been my self-conscious trying to assuage my sense of guilt or it could’ve been a little inspiration of wisdom – or a combination of both.)  Maybe there’s something in life that he’s gaining through this chore…? Continue reading

May I Call Myself A Cripple?

At the beginning of this month, I submitted an article to an online site for the first time – an article that was very quickly rejected.  The story was for themighty.com and I knew that I was running the risk of rejection because of its language, a bit politically incorrect, maybe even harsh to some.  It wasn’t meant to be harsh, however, just honest.  Perhaps, I didn’t make myself clear enough – or perhaps they were just rejecting everything this month.  Since I’m not afraid to be controversial in my own blog,  I’m sharing the story with you…

Christina Chase, girl in wheelchair

I remember the first (and only) time that someone called me a cripple to my face.  It was an early summer evening in front of my great-aunt’s house, when I was about seven or eight years old.  I was alone, sitting in my manual wheelchair on the sidewalk, probably waiting for my sister as I was too weak to propel the chair myself, and a boy was walking along the same sidewalk in the opposite direction.  When he saw me, he looked at my skinny body in my little wheelchair and said, “You’re a cripple.”

And I laughed at him.

I would like to say that I laughed bravely in the face of bullying… but, that wouldn’t be a true description of my laughter or of the situation itself. Continue reading

Autobiographical Page

I’ve been toying with what to write on my “official website”  (sorry, that still sounds pretentious) concerning my bio page.  The homepage is an “About” written in the third person (yes, that was very weird to write) but, I’ve decided to include a little something more “in her own words”  – yes, in the first person.

Below is something that I came up with – and I really want to know what you think…

 

Life with a disability isn’t anyone’s ideal.

But, it’s life without love that’s a tragedy.

Because of my genetic disease (infantile spinal muscular atrophy) I have experience of particular suffering, often acute suffering, as I lack the gifts of physical health, strength, and abilities. Because of my amazing and self-giving parents, however – as well as my doting sister, close childhood friend, big extended family, brother-in-law, nephews, and even generous strangers – I have always known that I am a loved individual. Best of all, though I didn’t always know it, I have come to understand that I am eternally loved by my Creator, that I have been infinitely and intimately loved into being by God.

Yes, I am gorgeously rich in love.

And that’s the story of my life. For, this love has shaped me, saved me from error, and sent me on my path – on the good, true, and terribly beautiful path created just for me.

Not the bio that you were expecting, I’m sure. Most people, when writing about themselves, would probably list their accomplishments, in the form of college degrees, work experiences, spouse, homeownership, or children. I have none of these usual things. And, yet, I have listed what is most important in my life, I have listed the greatest blessings and experiences that I have been given, by declaring one accomplishment – which is not really an accomplishment at all, but, rather, an unmerited gift: I know that I am loved.

Dear reader, my prayer is that, no matter how worldly-great or worldly-small you may be, you will also receive the greatest and best that human life has to offer: the experienced knowledge of unconditional love, which is divine.

© 2018 Christina Chase

Mama

My mother is having surgery today.  She needs to have a full tear in her rotator cuff repaired – a surgery that is not uncommon.  But, I admit… I’m still worried.

Yes, I’m a bit of a worrier, what can I say?

Of course, I hope and pray that all will go well – that God will guide the hands and minds of the surgeon and all who are involved, according to His Perfect Will.  And I do trust in God’s goodness.  (All prayers are welcome!)

I thought I’d take this opportunity to share a little of my mother with you.

So much more to me than a mother is she, although a mother is beyond good and beautiful, a wonderful wonder to be…

I’ve always been disabled, but mothers are supposed to take care of their children.  Now that I am an adult with great dependence and need, my mother is still my caregiver – even though, through the years, her own physical abilities have declined and racked her body beyond her age.  Being a hard worker, selfless, and stubborn, she pushes through pain and weakness, shuffling, bent over, dragging herself to do what she feels needs to be done.  As a woman, she is a marvel.  As a mother, she is a treasure.  And, as a human being, she is my friend, one of my favorite people in the world.

Hoping that this doesn’t sound too sacrilegious, I was thinking the other day of how my words to describe my mother are many of the same words that I use to describe Christ.

She is my rock.  Not only because she is tough, but also because her gifts and talents are constants, reliable, always there when I need them.  She is the firm foundation of our family.  No matter what the many things that assail her, if I really need her, she finds a way.

She is my refuge.  Everyone who has ever come to our house knows that my mother’s home is a true home, not only for her family, but for everyone invited, who all feel comfortable and lavishly pampered in a house of love.

She is my light.  When my mother is happy, everything is easy, music and laughter fill the house, and we deliciously delight in each other’s company.  Even when she isn’t happy, if I have a small decision to make, if I’m not quite sure how to do something or move forward, my mother is the one to whom I turn.  Her practical wisdom is unmatched (even if she doesn’t always take her own advice!)

As we are preparing for Christmas (my mother’s favorite time of year) these thoughts about my own mother make me think about Christ’s relationship with his.  Aren’t many of the things that I said about my mom true about many good mothers?  Of course, the mother of Jesus is exceptional – there is no denying that.  Mystery of Mysteries, God chose her to be His own mother.  How he must have loved her!  But… my mother is exceptional, too.  As disabled as her body is, she pushes through her pain and weakness and cares for me (and I so don’t deserve it – no arguing.)  And she cares for others with love and joy, with a selfless generosity that goes beyond being a “good” mom or even a great one.  And… mystery of mysteries, God chose her to be my mother.

I thank You, my Lord and my God, for the amazing person whom I am honored and privileged to call, “Mama”!  Watch over her and take good care of her, please, helping her to recover fully and well, with as little pain as possible.

© 2017 Christina Chase

Radically Give Thanks in All Things

Thanksgiving, Bible quotes,

“In all circumstances give thanks, for this is the will of God for you in Christ Jesus.”[1]

You know that Thanksgiving tradition of going around the dinner table asking each person for what he or she is most thankful?  One easy way for me to respond would be to say, “I’m thankful for my family.”  Simple and, perhaps, cliché – yet, this gratitude is so profoundly, undeniably, and unshakably true that I do feel compelled to say it aloud whenever situations allow.  May I write out right now: Thank You, God, for the awesome blessing of my family and friends!!!

Yes.  It is good to express gratitude out loud for good people and genuinely praise God for them.  But…

Radical Thanks

In the Bible verse that I quoted from St. Paul, it doesn’t say to give thanks for the nice things in your life.  It says to give thanks in all circumstances.  And this calls to my mind the words of Jesus, who reminded us that it is easy to love the people who love us – but what about the people who hate us?  Christ calls us to cast into the deep, to not be bound to what comes naturally to us as creatures of the flesh, but to transcend instinct and do what is supernatural, what is divine, responding in accordance to the spirit within us.

As we, then, are radically called to love our enemies, we are also radically called to give thanks in all circumstances.  Yup, all of them.  If we are in the midst of an unjust situation, then we are called to be thankful for the opportunity to practice virtue, to right a wrong, and to share God’s compassion.  If we are in the midst of grieving the death of a loved one, then we are called to be thankful for having known and loved this precious person, who is thankfully not lost, but alive in Christ for all eternity.

This gratitude doesn’t mean that we are called to be complacent.  We pray for the courage to change the things that we can… but we also pray for the serenity to accept the things that we cannot change.

One Big Thing That I Cannot Change

Continue reading

Life with Dignity: a Personal Plea against Assisted Suicide

Saint Augustine wrote, “it is never licit [right] to kill another: even if he should wish it, indeed if he request it because, hanging between life and death, he begs for help in freeing the soul struggling against the bonds of the body and longing to be released; nor is it licit even when a sick person is no longer able to live”.  (Ep. 204, 5: CSEL 57, 320)

For centuries, good and brilliant people have been advocating respect for human life.  I am not so very good, and certainly not brilliant, but the issue of assisted suicide, the so-called “right to die with dignity”, is very important to me. Physician-assisted suicide for terminally ill patients is the law in some states, like Oregon, Washington, and California. Other states have sought to pass similar legislation, including my own state of New Hampshire. When attempts fail, advocates continue to push and I’m sure that more proposed bills will be coming to a state or country near you – perhaps your own.  Here, I don’t offer pages of arguments against these laws.  Instead, I offer a heartfelt plea against “Death with Dignity” in the hope of saving countless innocent lives.

Christina Chase, disability rights, pro-life

My Life

Do you know what it’s like to be weaker than an infant, laboring daily to breathe, ravaged by an incurable disease, completely and utterly dependent on others for every basic need of survival? I do.  Although I am not terminally ill, but rather chronically ill, I know that one chest cold can turn into pneumonia and kill me… probably an agonizing death over days… or weeks.  Living all of my life with a progressive motorneuron disease, I have slowly weakened over time, becoming more crippled up and deformed, losing strength, losing simple abilities, losing energy, losing privacy. My family and paid home health aides feed me, brush my teeth, clean me of waste, bathe me, dress and undress me, transfer me to and from my wheelchair… and more. My parents have made tremendous sacrifices in order to help me survive each day. They are sacrificing their time, energy, strength — their own personal lives — for my life. And there have been times when I have wondered… is my life worth all of this? … all of this work, sacrifice and heartache? Continue reading

Food of Prayer

 

I have rather hated the stereotype that religious people need religion as a crutch.  Prayers, Scripture, faith itself, they say, are all wishful thinking that bring comfort to the elderly, the poor, and the disabled.  “Poor things.  Let them have their church.”

fingers praying

For me, religion has been much more of a challenge than a comfort.  It was in the beginning and it is still now.  But, it would be foolish of me to push away the comforting and consoling aspect of faith just so that I won’t fall into prejudicial people’s stereotypes.  When turning to God intentionally, with my whole body, mind, heart, and soul, it is good and it is right to receive from God some solace.  No one loves me more than God loves me, no one delights in me more than God delights in me, no one cares about my joy more than God cares about my joy, and no one else has my eternal life in hand but God.  Knowing this, to whom else would I turn?

Lately, for almost all of 2017 so far, I have been in need of solace.  I need comfort and, for me, that means that I need wisdom.  I need a glimpse of the big picture so that, in faith, I may know what is right and have peace.  I need a full relationship with God.  I freely admit this.  Does this mean, then, that religion has become a crutch for me?  Well, if I am lame, don’t I need a crutch?  Would the atheistic-minded naysayers of the world have me crawl or lie motionless on the ground?  The mistake that nonbelievers make is in thinking that they are not crippled in the limitedness of being human.  They are limping, crawling, or not moving at all – and they don’t even know it. Continue reading

Glory Days: Valedictory Speech

Twenty years ago today, I graduated from high school.  And, yes, that makes me feel old.

Graduating from Pembroke Academy was a big deal to me, for reasons that I gave in my very short valedictory speech, but also because I was the third generation of my family to graduate from PA – and the second to graduate with the highest GPA in the class.  I did feel a lot of pride on that day… although, I admit, I also had the sense that, perhaps, I didn’t really deserve to be valedictorian.  After all, I hadn’t even attended classes in the high school, instead, the public school teachers came to my home to teach me, due to my physical disability.  It wasn’t that I didn’t think that I was intelligent – I have quite high self-esteem, so I knew that I was intelligent – but I felt bad that I didn’t have the opportunity  to fully test the depth and breadth of my intelligence.  In a way, I almost felt too normal to be valedictorian.

Thankfully, I was not chosen because I was in a wheelchair and seen as “special”.  In my school, it was all about the grades.  So, I did, as I have reminded myself many times, earn the top spot with self-discipline and devoted studying, fueled by my love of learning.  All made possible by an understanding public school faculty and administrators, generously supportive parents, and the mysterious gifts of God.

In commemoration of this glory day of mine, I’m sharing with you my graduation speech.  As you read it, picture a tiny body swallowed up by a white robe, with a graduation cap fitting snugly on her head.  And when you’re done reading, listen for the standing ovation – yup, I got one.  With a body like mine, it doesn’t take much to move people. 🙂

My Valediction to the Glory Days of High School

“Many people have asked me the common question of what I plan to do after today.  The truth is that I haven’t made plans for the future because I never thought that I would have one.  You see, when I was diagnosed with my disease at the age of two, the doctors told my parents that I wouldn’t live to the age of thirteen.  My parents never thought that I would be a teenager, let alone a high school graduate.  But I always dreamed of graduating.  I even planned on being at the top of my class.

Today is a great day.  For here I am, standing before you, graduating from high school, and realizing my dream.  And all of the challenges that I’ve faced and the obstacles that I’ve hurdled have made today the most satisfying and thrilling day that I have ever known.

Now I have this chance to speak to all of you and I don’t want to give any advice.  I just want to say that, today, we are all victorious.  Whether graduation means fulfilling a dream, accomplishing one of many goals, overcoming obstacles or exceeding expectations, for each of us it is a mark of success.  It is a testament to our perseverance.

The future lies before us, holding different paths for each of us.  For me, the future itself is a wonderful gift.  It is an open place for fulfilling more dreams.

Tomorrow may be an unknown.  But, today, we are being recognized for our commitment to succeed and reminded that we are all worthy of our dreams.”

© 2017 Christina Chase

YouTube Channel – For Better or for Worse

YouTube cover, wheelchair, church, light and dark

Sometimes, I think that people make YouTube videos because they like the sound of their own voices.  But, I assure you, that’s not the case with me.  I seriously DISLIKE the sound of my own voice!  My voice is preferred through writing not speaking.  However, I believe that I should try to reach as  many people as I can and I know that there are some people who would rather watch a video than read a 1000 word essay.  So…

Last month (April) I made and published a short video reading a poem about myself and I called the post about it Brave.  I really did feel brave and, yes, a little foolish.  And, yet… I went and made another one!  This one is longer, longer than I intended, and I thought about redoing it to make it shorter and better.  But, then I thought that one of the advantages of speaking versus writing is that I don’t have to be so particular with my grammar, word choices, sentence structures, etc..  Therefore, I simply published it as is. Perhaps as a sign that video production is not for me, I accidentally published  the post with the video “What’s Wrong with Her” early, last Sunday, (with an odd predate of the 18th) instead of on Thursday, my usual posting day.

So, here I am, on my regular posting day, with this little introduction to my YouTube channel.  My plan is to make and post a video every month or so, weather permitting.  🙂 They will mostly be about my disability and disease and, hopefully, under five minutes in length.  I still do feel both brave and foolish doing this, but, here I am…  On this Feast of the Ascension, reminded that Christ is always with us, I hope that I am doing God’s will…

© 2017 Christina Chase