SIX LESSONS I’VE LEARNED FROM MY THERAPIST

Therapy is for everyone. No matter if you think you need it or not, we are all human and have things we need to work through. Therapy is a wonderful, and for me, lifesaving tool.

This month, I’m celebrating my sixth anniversary of beginning my counselling journey. As I reflect on who I was when I first began to who I am now, it is a world of difference. I have a long, long way to go and there’s always more to learn, but I’m just so grateful for the therapy that I’ve been able to access, the gift of growth, and of course, my therapist.

Starting with the Foundation: Three Lessons

I. Having Cancer was Traumatic

Having been diagnosed with bilateral retinoblastoma at the age of four, I grew up with the “C word” being commonplace. I learned, whether explicit or implicit, that because I was fortunate enough to survive and be healthy now, I wouldn’t be traumatized. I survived, I was healthy, and I had a bright future ahead of me despite the challenges of my blindness.

But this optimism, while well-intentioned and a means to cope on behalf of those closest to me, lead me to question my mental health and search for the root cause of my anxiety and depression. And what my therapist, who is both a Christian and a trauma-informed practitioner, explained to me was that my cancer experience was indeed traumatic, and many of the issues I face are due to that trauma. Knowing this has freed me and allowed me a way to understand and move forward in my life in a much healthier and more fulfilled manner.

II. Spiritual Bypassing

Out of my years of therapy, spiritual bypassing is a concept I’ve only learned about within the last few months. Yet, it is revolutionary for how it has opened doors for me to begin deconstructing particular patterns and relationships.

Spiritual bypassing is defined, according to John Welwood, the psychotherapist who coined the phrase, as a “tendency to use spiritual ideas and practices to sidestep or avoid facing unresolved emotional issues, psychological wounds, and unfinished developmental tasks.” It is a fascinating concept which I am in the midst of delving into more deeply to gain a fuller understanding.

III. My Body Has Answers That I Don’t

I used to believe that I knew better than my body. It was just a collection of organs and physiological processes, right? But thanks to my therapist and the abundance of research available, I know that the body is much more than that. Our bodies and our minds are intimately connected, making our mental and physical health inseparable. The body remembers events and traumas that we’ve forgotten or buried. And if we learn to listen to its wisdom and signals, we will be closer to gaining an understanding of our pasts and how we can use that knowledge to shape a healthier future.

Building On the Foundation for a Healthier Future: Three More Lessons

IV. Let Go of a Toxic Self Image

Umm, let’s just say that my self image needs work! In my 26 years, I have become incredibly skilled at crafting an image of myself based solely on everything negative, shameful or uncomfortable that I have done, said or believed. While these are parts of me that I can’t erase from my past and will continue to work on, they are not what defines me and not [usually] how others view me. I hope to learn to forgive myself for the mistakes I’ve made [and will make], and define myself by God’s standards rather than the world’s.

V. Deconstruct the Unhealthy Parts of My Faith

I have been a Christian since I was five and grew up in a conservative household. As I’ve matured into adulthood, I was able to begin disentangling what I’d been taught by the Church, the Bible and other Christians, and I want to continue this journey. This does not mean that I’m being selective in which parts of God’s teaching I believe. However, there are toxic teachings I have adopted which aren’t bringing me closer to God or showing His love to others. It’s these teachings and beliefs which I am hoping to shed as I continue to learn, grow and develop as a person and a follower of God.

VI. How to Talk to Others About My Journey

Talking comes naturally to me. Talking about deep, emotional and often traumatic experiences is another thing entirely. I’m hopeful that as I continue going to therapy, I will learn to balance my emotions with the knowledge that my mind and body hold, and engage in conversations that can help those around me understand and validate the journey I’m on.

Have you gone to therapy? Tell me about your experiences. What’s something you’ve learned there that you use in your life now?

THE LIE OF THE LIMITLESS PHILOSOPHY — AND WHY LIMITS ARE ACTUALLY A GOOD THING

Whether you prefer to use the term pessimist, realist or glass-half-empty, it amounts to the same thing: I see the world as it is. Perhaps it’s because I’ve grown up disabled, and been subjected to my fair share of pitying stares, condescending questions and ableist attitudes which have made me rather cynical. Or maybe it’s the handful of other trials I’ve faced that have shown me time and time again that life is, and will always be, a challenge.

This isn’t to say that I don’t dream, or have aspirations of greatness or ambition to reach high and achieve. Anyone who knows me in my personal life can tell you so. But I am, and will always be, a realist.

And as a realist, I must make a declaration, or a confession if you will, and one that I rarely hear uttered in the blind community. Pardon me while I take a deep breath.

There Is No Such Thing as Being Limitless

Well, have I done it? Have I just made myself enemies in the very community in which I’ve thrown so much of my time, passion and words into? Maybe, and the only reason I wonder is because, in my experience, this philosophy of limitless potential is one that is rather divisive in the blind community. But maybe, my words don’t have to be fighting words but offer another perspective for you to think about.

I’ve read many a headline, mission statement and mantra which propagate an idea that says that just because we are disabled, does not mean that we are limited. We’re fully capable of achieving anything we desire, and there is nothing that can stop us—especially people who aren’t disabled.

But each time I read the headline, the mission statement or hear the mantra repeated by a fellow disabled person, I inwardly groan. And this is why.

I have limits. So do you. You, my disabled compatriots. You, my able-bodied allies.

We all have limits.

And I believe we do a major disservice to the disabled community and our attempt at societal equality when we promote the limitless philosophy. Because it simply isn’t true. It creates a falsity that, motivating or otherwise, is wrong and will only lead to disappointment and failed expectations.

But We Are All Capable

Now let me be clear: Disabled people, and in particular, disabled children, must be explicitly taught that they are capable. The world does a good enough job instilling doubt in its disabled people, so we must combat that doubt with hope. Blind children can grow up to be teachers, lawyers, artists, performers, politicians, doctors and virtually, any profession they set their sights on. As a child, playfully predicting my future in a game of MASH, my friends and I always put “bus driver” as a possible profession, jokingly of course, since we knew that I could never be one. Ability is not a reflection of determination. For as hard as I may try, I, a fully blind woman, cannot drive a bus.

I have a limitation. There are things I cannot do, like drive, and there are things that are harder for me but still possible with the right adaptations or equipment.

Disabled children who grow up in the knowledge of their own capability, talents, skills and unique abilities can, and will, lead full lives. But what becomes of their dreams if a life without limits is the guiding principle?

Being realistic can have its downsides. But the prevailing positive of being a realist is that expectations can be more easily managed, and one’s limitations can be worked with, not against.

If one can acknowledge their personal limitations and learn to view them not as a drain on their existence but a parameter within which to learn and grow, so much can be done. How can the windows be washed to let the light in if no one acknowledges that they are dirty?

It’s the same with windows as it is for limits: we must know what they are, acknowledge their presence, and live on. Because to live life denying an integral part that influences my every decision is to deprive my life of what it could be if I were to embrace it, fully and completely.

Embracing limitations is not only a discussion for those with disabilities, though. Everyone has limits, so this is a discussion for everyone.

Maybe you don’t consider these limitations, but rather “struggles” or “difficulties.” No matter what you call it, doesn’t it amount to the same thing?

Being limitless is not what drives us to succeed. This philosophy only shelters the reality that, for many disabled people, is cold, inaccessible and an ongoing challenge. In this way, limits are exactly that, limiting, making it so that the person cannot achieve their goals and desires. But I believe that once the limits are acknowledged and not seen as the enemy, then a fuller, more free, success is able to be achieved.

And that success is a more rewarding kind, because it isn’t founded on the idea that we had no limits and could achieve whatever we desired, but that we embraced every part of ourselves and worked together to achieve our dreams. You don’t get more points for living a life free of limits, but you do get a more fulfilling one by working with what you’ve been given and doing your best.

Limitations are only limiting when we use them as excuses not to try. What we perceive as a limitation, like blindness, doesn’t have to limit blind people, but propel us to make a positive change. And this is what I strive for in my life, and what I want to encourage you to do, as well.

Tell me your thoughts in the comments. I’d love to hear your perspective about limitations and how you manage them in your daily life.

TIME CAN NOT HEAL ALL WOUNDS, BUT THERAPY WILL

Talking to My Therapist and God

I talk to my therapist and God
at the intersections of my subconscious;
intermittent conversations penetrating
my awareness of childhood
trauma and childlike
faith,
where the cancer scar fades but
my skin is still stitched with threads of
chemo and vomit
and echoed laments to healer God for a
chocolate cake with six candles
and no flowers.
Where water is thicker than blood
but neither can quench my soul.

adrift in flashback
cast out in communion

My therapist and God talk to me
about healing.

© Rhianna McGregor

I wish I had a porch swing tonight. As a teenager, I found God’s comfort as I gently swung myself back and forth on the porch swing, staring at the stars and letting myself just feel. I sat on that swing, telling God about my first broken heart, my emerging struggles with traditional, evangelical Christianity, the friendship I ended over Skype… everything.

I wish I had a porch swing tonight.

Or at least, I wish I could talk with my therapist.

But therapy costs money. So does planning a wedding. And moving to a new city. Caring for my guide dog costs money, and trying to feed myself food that isn’t processed in plastic costs money.

And I don’t have much money. That is the simple truth of the matter and I see no point in sugar coating reality. After all, it is a reality lived day after day by many more people than just myself, and there is no shame in it or in seeking help.

But this isn’t a post about the doom and gloom of my financial stress, nor a plea for pity.

It’s merely to sit down with you on my porch swing and talk to you about my life. Will you sit with me for a while?

I have very exciting changes coming in my life. In a matter of weeks, I will become a wife and begin a new adventure with the love of my life. Alongside marriage, I will be moving to a new city with my husband, and will no longer have to travel back and forth and live long-distance. Many of the challenges we face today will be resolved once we say “I do.”

But what will not be resolved are the deeper issues that I pretend I don’t wrestle with, but which plague me on a daily basis.

They say that time heals all wounds. And while I can’t definitively say there is no truth to that, my experiences lead me to believe that time does not heal at all. It merely offers a cozy bed in which to huddle beneath blankets and indulge in a bucket of negativity.

I don’t want to be someone who holds grudges. After all, I’d like to be a person who follows 1 Corinthians 13:5, “Love keeps no record of wrongs.” But taking the high road and being that person, not simply spouting the good intention, are two different matters entirely.

I’ve touched on a couple of friendships of mine that have completely evaporated in the last several months. But as time goes on, I find myself falling deeper and deeper into the pit of bitterness and resentment, and farther from healing. Time has made a comfortable place for me to nurture my hurt, anger and deep sadness. There is no room for healing here.

You might think, but Rhianna, give it another try. Reach out. There’s no harm. Since I will not divulge the details of these relationships’ struggles, I can’t expect anyone to understand my position. But I will not, and cannot, rebuild these friendships. As my fiancé said, it’s like pouring water into a cup that leans on an angle—the water can only go one direction. I’ve tried again and again, and all we’ve done is spill more water.

But what’s it going to take to actually begin to heal from these hurts that not only happened in my past, but actively impact my present? A day doesn’t go by where I don’t feel a ball of bitterness sitting in the bottom of my belly, or rising up to my throat as hot, angry tears and screams that I can’t let out. It rears its head in everything I do—my writing and publishing endeavours, my fear, but deep desire, to make new friends, even the physical items around my home that remind me of what happened.

I want to heal. I don’t want to live like this anymore. But what can I do when old wounds continue to bleed, and new wounds puncture my heart, and make moving on next to impossible?

I don’t believe time is the answer.

But I do believe I have the answer. God and my therapist. I wouldn’t be who I am today without their love, support and guidance, and I won’t be the person I want to become without them now.

My therapist may cost money, and I do work to make seeing her a priority. But while I work and save, I’m just thankful that talking to God doesn’t cost anything.

Hey God, you got a minute [or two?]

WHAT A YES-AND-YET LIST IS AND WHY IT’S PART OF MY SELF CARE ROUTINE

What began as a standard, to-do list in the weeks before moving to a new city over a year ago, has now become a means of self-care and a reminder that, yes, I, Rhianna, can do this.

I don’t know if it’s my blindness, my anxiety, or just being an “adult” trying to figure out “life,” but I have a heck of a time giving credit where credit’s due … But only when it comes to myself.

In my brain, success never comes through my own skills and determination, but because of the support I’m given by friends, family and professionals. Somehow, the support I receive invalidates my contributions to succeed, and thus, I can’t take credit for it or feel a sense of accomplishment in my own success.

Short story long? If I get help with a project, I can’t be proud of myself because I didn’t do it independently.

I can’t take any credit.

Y’all know that I love a good list. I make them for everything—grocery shopping, house cleaning, which items are for sale and which are going to the thrift shop, planning blog posts, so it wasn’t a surprise then, that when I decided to move to a new city, I started a list of all the things I needed to get done. Here are a few of the first things that I wrote down:

  • Find somewhere to live on the island
  • Give month’s notice to landlords
  • Apply for dog license
  • Book hair appointment
  • Sign rental agreement and addendum
  • Send damage deposit
  • Send code for door keypad
  • Write 2020 review
  • Make eggplant parmesan quesadillas
  • Return immersion blender

Looking at a physical list of the tasks made me feel organized and ready for the challenge. Now that I knew what needed to get done, it was less overwhelming to do those things. What had felt like an impossible task in my brain—moving to a new city alone—was now doable because it was broken down into little steps. And one by one, I checked them off.

That’s how my Yes-and-Yet list was born.

But it soon became more than that.

As a record-keeping fanatic, I knew I couldn’t simply check off an item, delete it and move on. It would be as though I were deleting the very thing I’d just accomplished. And with this move marking such a significant time in my life, I knew that I’d want to look back and reminisce. But not to pat myself on the back and think, “wow, look how productive you were,” but to realize that even in times of pressure and chaos, I am capable. It was comforting after a day of planning and prep to lie in bed and review the list and know that I would be okay. With every task I checked off, I was proving to myself that I could make it on my own and follow my dream.

So, after settling into my new house, I kept my list going. And a year later, I still add daily to that original list.

Though it began as a list to organize one specific event, the Yes-and-Yet list has become my master list of everything going on in my life. From booking medical appointments to washing my dishes to when I’m expected to receive Amazon packages, anything that requires my attention goes on the list.

But why write a post about my Yes-and-Yet list when to-do lists of all manner are standard in nearly everyone’s daily life?

Here’s why.

Because I have spent years delving the depths of cyberspace to find a system of keeping myself organized so I wouldn’t drive myself crazy, and coming up blank. I’ve downloaded dozens of apps, calendars and planners, hoping that one of them would be “it.”

But it never was.
So I created my own.

My Yes-and-Yet list as my master list because it contains everything from all parts of my life. But one could argue and say that in it being a masterlist, it isn’t organized and overwhelms more than it helps.

But there is one major advantage to the master list and it’s the one reason above all else why I keep it:

Because when I feel like a failure, I get to gaze upon page after page of things that I’ve accomplished, and feel a sense of pride in myself and what I’ve done.

Sure, some of my yets and yeses are basic, daily living tasks like washing dishes (AND putting them away) and vacuuming the living room. But for someone who struggles with mental health, these can often become insurmountable challenges. And on those days, seeing even one task in the Yes column, makes a huge difference in my mental health.

It’s why I write everything down in the Yet column, so that on days when I have very little energy and am unfeeling unproductive, I can sift through the manageable tasks, check off one or two, and feel proud of myself.

It isn’t always easy, though. Living in the society that we do, there’s a constant pressure to be productive and achieve a certain level of success in each passing moment. But the simple truth is that everyone’s definition of productive is different, and that’s okay.

For me, folding and hanging all my clean laundry is a big win, whereas to others, it wouldn’t even make the list. But I’ve always believed in celebrating the little victories, because for someone out there, it’s not little. And every victory is worth celebrating.

All the thoughts spinning around inside my head don’t feel so overwhelming when one by one, I can write them down, and one by one, I can add them to the “Yes” list.

Tell me, what method do you use to keep yourself organized? Let me know in the comments.

FIGHTING THE FOG I CANNOT SEE

It’s a question that hangs over my head like fog whenever the first symptoms start to emerge.

Am I depressed again?

In this post, I talk about the what ifs that surround me when it comes to a potential cancer diagnosis. I monitor symptoms, research every possible cause, and panic at the inevitable truth—I have cancer.

But that hasn’t come true, and I’m thankful for that.

But what does seem to arise every few months is a bout of depression. I monitor symptoms, research methods of coping and regaining energy, and then succumb to the inevitable—I’m depressed.

Every person’s journey with mental health is unique. Each story deserves to be heard and each person needs to be loved. And as I tell you a bit of where I’m at with my mental health, I ask for that love and grace to be shown to me and everyone in the comments.

My first sign of a depressive episode is always isolating myself from friends and family. That study session at the coffee shop? Sorry, I’m busy. Want to go for a walk tonight? Can’t, I’m not feeling well. No matter the event, I find a way to stay home, buried in my blankets and senseless entertainment. Then comes the sadness that I can’t process—where did this come from? I wasn’t sad last week. The sadness turns to anger, and the anger tries to find an outlet. And finally, I put the pieces together: I’m depressed.

But now what?

I first recognized my depression while living on campus during university. It was there that I began going to therapy on a weekly basis and working through my struggles. I still see my therapist on a monthly basis, five years later. And while she’s given me many tools to manage my mental health, I have to resign myself to the reality that, to some extent, I will always have mental health challenges.

But over time, the way my struggles manifest has changed.

I still isolate. I still get sad and angry and hide within myself. But if this past week has shown me anything, it’s that as I change, my symptoms do, too.

Tonight, I was on the phone with my fiancé when I asked out of nowhere: “Is something wrong with me?”

Bless him for knowing what I meant, because that question is as vague as they come. I was referring to my headaches, my nausea, my inability to sleep through the night, and my preference for laying on the couch watching Netflix. I was talking about the lethargy, the realization that I don’t want to do those things that I find fulfilling, and how all I want to do is cry. My voice never got above a loud whisper as even talking took more energy than usual.

“I don’t know, honey,” he said. “Maybe you’re depressed.”

“I don’t want to be depressed,” I said, almost in tears.

I don’t. No one does. Being depressed is awful; if the symptoms we experience aren’t hard enough, add to it the societal stigma associated with mental illness which makes it difficult for many to reach out for help, and our depression is just compounded.

But it may be happening again. And as much as I may fight it, I may be in the early grips of a depressive episode.

I do have the tools to work through it. I have my therapist, my support network, and my antidepressant medication which helps to keep me stable. But nothing is foolproof, and even with all those measures in place, I still struggle.

And I’m scared. I’ve been here before and it’s a scary place to be.

But as I stare down the barrel of yet another depressive episode, I’m trying to remember three things:

  • It won’t last forever.
  • It’s okay to feel what I feel.
  • I have my God and my people to walk alongside me, no matter what comes.

THE QUIET SIDE OF CANCER SURVIVORSHIP — LIVING IN A WORLD OF WHAT IF

January 27, A.K.A. Classy Glassy Day to my family in honour of my first prosthetic eye, is the day each year that I celebrate being cancer-free. Although I underwent a few rounds of precautionary chemotherapy after the final enucleation, this day will always be near and dear to my heart. After all, it’s the day that I became blind and the cancer was eradicated from my tiny body.

Yes.

And no.

True, the cancer was gone and that part of my life was in the past. It was now full speed ahead into learning braille, using a white cane and adjusting to life as a six-year-old without sight. But what everyone failed to mention was the fact that what I had just endured was traumatic, and that I would live with that trauma for the rest of my life. Yes, the physical cancer was gone, but the psychological ramifications would be a constant fight.

I was in middle school, deep in denial about my blindness, when I was handed a book of reports written by a fourth-grade class… about me. I flipped through it, astounded at what I read. I recall one report vividly which stated explicitly that the doctors expected me to be depressed, but I wasn’t.

“I was supposed to be depressed?” I said to my mom, shocked. I hadn’t heard about this. Why did they think that? I wasn’t depressed.

The Clock Syndrome

“I’m going to die,” I announced to my therapist one afternoon when I was 20. “I’m not going to live past 22. I’m going to die young. You just watch.”

Spoiler alert: I lived, and am now a grand ol’ 25. But what was the deal with 22? It’s hard for me to explain without fearing that you’ll think I’m crazy, but if I write for anything, it’s to normalize the unspoken experiences that many people are too afraid to say aloud.

Growing up, I saw my future stretching before me like a road. I could see the twists and turns and the landmarks that I would pass by on my journey through life—high school graduation at 18, travelling abroad at 19, earning a university degree at 22, and then—
Then what?
That’s where the road stopped. I had no more visual concept of what my life past university could be. It was blank.
To me, the emptiness of the road meant there was no road at all.

But I kept this to myself. To be “normal,” I dreamt about what life might hold for me, and I even planned parts of it. I wrote a list of my favourite baby names, I designed wedding invitations when I was 15, and I speculated at what kind of old lady I’d be. But deep down, I knew it would never happen—I would die before I got the chance.

My therapist and I called this the Clock Syndrome. Many days, it was a physical weight on my shoulders and I felt the tick tock, tick tock, thumping in my brain like a hammer. “Don’t waste your life,” it whispered. “Pack in all the experiences you can now, before it’s too late.”

As a result, I raced through my late teens and early twenties. I graduated from university in three years, enduring a five-semester streak that ran me into the ground. I pressured myself to get married and have children before I lost my opportunity to, and I made myself a deadline to be a published author by 25.

The fear that I would die young was paralyzing.

And every time I contemplated my inevitable death, it was because of cancer. I had it once, of course I’d get it again. And I wouldn’t be lucky enough to survive twice. But what kind of cancer? And when would I get it? Would I have symptoms? What if I had it now and just don’t know it? Thus, I fall into what I term “cancer spirals,” and they look a little something like this:

  • I feel fatigued. It must be leukemia. Wait, where did that bruise come from? Am I having a night sweat or am I hot because I sleep under four blankets? This hasn’t happened before—it must be cancer.
  • I’m not on my period, so what’s this discharge? Is that a sign of ovarian cancer? Cervical? Have my periods been extra painful lately? Wait, was my period on time last month? It must be cancer… I’ve always been regular.
  • My heart is beating faster than normal. I heard that advanced lymphoma can cause rapid heartbeat. Let me check the results from my last blood test; is anything out of the ordinary? What if the blood test doesn’t catch it, and then it’s too late?
  • Do I want to undergo chemotherapy again? What about immunotherapy? Where do I get a wig? Maybe I should get one now so I have it… just in case.

If you’re exhausted reading that, welcome to my brain. These cancer spirals are as normal as dipping chocolate chip cookies in milk. I don’t even have to have symptoms to fall into the world of medical articles, diagnosis stories, the latest experimental cancer treatments, and which secondary cancers to be on watch for. I live every day, expecting to be thrust into this reality. Yet, it mightn’t ever happen. I might die before I turn 26, or I may live another 70 years in perfect health.

But, what if I do get cancer again?

It’s that what-if that keeps the clock running. And every day, I wonder if I’ll ever outrun it.


September is Childhood Cancer Awareness Month. It’s a busy time, with fundraising for cancer research and programs to support the children and their families taking their well-deserved place in the spotlight. But amidst all the activity that September brings, take a moment to remember the quieter side of survivorship.
Remember the ones who live each and every day with the fear of relapse and recurrence. The ones who won’t tell you that they lay awake, examining their body for any potential threat. The ones who have to leave the room because the smell of bananas triggered a memory from the hospital. The ones who have trouble remembering things because of the chemotherapy. The ones who you didn’t even know had cancer.

Take a moment this September and remember us. Our stories are still unfolding, and at least for me, all I pray is that with each page turn, every childhood cancer survivor will know that they are loved, supported and heard, no matter what happens.

LOOK UP! — FINDING GOD WHEN I FEEL BLIND

Starlight Serenade

Sing, oh ye stars above!
Sing upon this earth with love.
Sing thy song with beauty inlaid
Sing your starlight serenade.

Sing to those who lie awake
Sing for the brokenhearted’s sake.
Sing a lullaby for those afraid
Sing your starlight serenade.

Sing to shine thy Father’s light
Sing to give His strength and might.
You’re fearfully and wonderfully made
So sing your starlight serenade.

© Rhianna McGregor

It was a seventeen-year-old Rhianna that wrote Starlight Serenade, sitting in the window of the spare bedroom at midnight. The cul-de-sac was silent except for the lone cricket singing his own serenade into the night. A neighbour’s fountain was trickling and if I settled my thoughts and stilled my heart, I could almost believe that I could hear the ocean. But what I heard above all this was the night itself speaking to me.

It was my escape and my safe place. In high school, when my life was shaken up like a snow globe and didn’t know how to settle, I turned to the night as a means to cope. The spare bedroom beside mine, which once belonged to my brother before he left for college, offered me a window ledge wherein I would sit, wrapped in a blanket with the window open all the way and only a screen separating me from the outside world. The breeze was gentle, constant, and I always wondered what the wind had seen; had it come from the sea, or had it visited someone else who was up late, crying over a broken heart? No matter what I was going through, the night was always there.

Most nights found me in the window, praying, crying, writing poetry, or a mix of all three. It was here that, all at once, I felt whole and distinctly broken, lost but safe at home, abandoned yet I was wanted.

It was where I met God.

But there was a catch. As with all things beautiful, they are never without heartache.

Here, my heart ached because in the silent beauty of night, I was acutely aware that I couldn’t see it. Here, I was blind and there was no escaping the truth. I couldn’t lift my eyes to the sky and get lost in the sea of stars, too numerous to count. I couldn’t make friends with the man in the moon, nor wish upon a shooting star like I had as a child.

I was blind. And my body knew it. This article discusses phantom eye syndrome, a condition classified by the presence of phantom vision, phantom pain or phantom sensations that individuals who have had one or both eyes enucleated can experience. In the years since my eyes were removed, I have often felt like I fit into the category of phantom sensations. But whether I am clinically accepted as experiencing phantom eye syndrome or not, I do not know, but what I do know is how it feels to want to see and not be able to.

I describe this sense of “feeling blind” to my friends and family as reaching for something but you come up short every time. Your fingers graze the edge, you strain and stretch to grasp the thing you so desperately want, but you can’t. It’s just a little too far, and no matter what you do, you won’t be able to reach it.
This is how my eyes feel. They want to see, and it’s almost as if they believe that in trying hard enough, they will. But they can’t. No matter how much they strain to encompass the visual world, they can’t.

But don’t think that I move through every moment of my life feeling this yearning to see that will never be satisfied. There are a handful of circumstances that I’m aware trigger these phantom feelings. And when they arise, I get myself into wide, open spaces. These phantom feelings aren’t dissimilar to claustrophobia in that I feel trapped in small spaces, so fields, beaches, even empty streets can help to alleviate the anxiety.

Here is a brief list of those circumstances:

  • The night sky
  • The sea
  • Looking through photo albums

Feeling blind doesn’t stop me from going stargazing or reminiscing over old photos. But I do keep mindful of its weight which at times, can be very heavy.
It reminds me that I am different
It reminds me that I am missing out on an entire sense and world of experiences that many people take for granted.
It reminds me that the visual memories I rely on to build new ones are quickly fading with time, and I’m working with limited resources that cannot be replenished.

But it reminds me too, that it won’t always be like this. CS Lewis said that “if I find in myself a desire which no experience in this world can satisfy, the most probable explanation is that I was made for another world.”

Being outdoors in the middle of the night is when I always feel closest to God. And I often wonder if that something that I’m reaching for but cannot grasp yet is God himself. I am a fallible human, incapable of grasping the truth of who God is and what His plans are for my life. I cannot grasp the ways of God or understand His thoughts in the midst of my humanity. Isaiah 55:8-9 says that “for my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. / For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”

And when I look up into an endless sea of stars, I am reminded that the world is so much bigger than I am. And so is my God.


Is feeling blind frustrating? Absolutely, it can be. I believe that it is a physiological response to the trauma my little body endured at five years old. But can it point me to the one who is bigger than my blindness, more powerful than my problems, and in control of whatever happens in my life?

Yes. And that’s what I try to remember when the blindness overwhelms me and I cannot reach what I’m so desperately searching for. I take a breath, tell myself that it’s okay to feel it, and channel the overwhelm into my heart’s yearning for eternity with God. There, I will see Him and that’s the truth that keeps me going for my time here on Earth.