The truth behind the photo

“Let us always meet each other with smile, for the smile is the beginning of love.”

Mother Teresa

Photos upon photos. My house is full of old family photos. Closets and boxes overflowing with photos with people I know or distant relatives I never met. Does anyone else have this photo problem?

One of my mom’s latest projects is to try to bring some organization to all these photos. She created a box for each child and several miscellaneous boxes for different sides of the family. Turns out it is a never-ending and somewhat emotional project bringing back good memories and some not so great.

As she was putting together my box, she pointed to some I should look at and my first response was “are they healthy me or unhealthy me?” (Healthy me being prior to cancer and radiation, unhealthy me being after the radiation treatments) For awhile after the radiation treatments, I looked pretty rough, my entire body bloated from steroids, eyes crossed, unable to walk, and had no facial movement. I avoid looking back on some of those photos partly because it brings back feelings of not being good enough and partly because I don’t want to go back there mentally, reliving those moments. I was so self conscious about how I looked especially during middle school when I didn’t have any facial movement, I missed being able to smile like everyone else. Eventually after living almost 6 years with no facial movement, we found a surgeon to restore movement in my face and bring back my smile.

As I looked at the photos, a flash of thoughts and emotions ran through my mind but there were two things that really stood out. First was a lack of gratitude. Lately, I haven’t really noticed myself smiling on a daily basis. Nothing in life recently has been terrible or given me reason to not smile, I just haven’t bothered. Sometimes life gets so mundane, remains status quo, and quite honestly seems boring after a while. It’s so easy to take life for granted, the present moment that we have been given or, things we once wished for. At one point in time, I would have done anything to get my smile back and yet, after years of waiting, I’ve become so used to it that I completely forget about it. Seeing those pictures made me stop and think about not only my smile but everything in life I tend to take for granted causing me to shift my perspective. We all need an attitude realignment every now and then.

Ever since I was younger I was obsessed with looks, appearance, and how others perceive me. It’s human nature to judge people, situations, etc. based on appearance but how little of the truth looks tend to say. For Lent, I gave up social media (definitely failed a few times but I kept trying) Once Easter came, I found myself wasting time scrolling and seeing out how social media tends to negatively affect my mood. I have a love-hate relationship with social media and decided I’m going to attempt to limit my log ins each day. I love how social media is an easy way to stay connected to people but if you’re ever looking for a quick way to fall into the trap of comparison, just log into one of your social media accounts.

Looking at those pictures of “unhealthy me ” reminded me of how much stock I put into worrying about what others thought because I didn’t have facial movement and I didn’t fit into the ideal world hence the feeling of not being good enough. But with time, I’ve realized that the one who is truly behind that feeling is me. It’s just a whisper I allow to creep into the back of my mind. And as much as I’m the one allowing the negative thought, I also have the power to shut that voice up.

Authenticity is the daily practice of letting go of who we think we’re supposed to be and embracing who we are.

Brené Brown

Be the one

When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.

Henri Nouwen

I am currently in a spring cleaning mode and decluttering my home. The other day while cleaning out a closet, I stumbled upon a picture from my last day of radiation treatments. The technicians who oversaw my treatments always were so kind to me and went above and beyond what was expected of them. They probably were not used to having a 7 year-old undergo intense radiation therapy and did everything to make me comfortable and not afraid. I remember the one technician used to remind me to bring my favorite cassette tape to listen to during treatments. He would sing along with the music, always making me laugh with jokes that I would most likely roll my eyes at now. Both technicians had a way of making me feel like I was special. At the end of each treatment, they usually had a small congratulations gift for me like a Beanie Baby or one time, it was one of those washcloths that grow in water. After my very last treatment we had a party just my mom and I and the radiation technicians. Sadly I don’t remember their names but I do remember how they made me feel. To them who understood what was occurring with my health better than most people, they could have been cold, distant, and not take time to care for me as they did but they didn’t. Instead they found a way to make an awful situation better, to walk with me, and to support me. As I thought about that experience, it reminded me of all the people who have made an impact on me not by giving sage advice or offering a miracle cure for life’s problems but by just being there and as cliche as it is, by shining their light.

A couple years ago, I read a book called The Listening Life. I highly recommend it. One thing it discusses is even when we are listening to someone, we are often so busy formulating our response or thinking about how we’ve experienced a similar situation and focusing on ourselves, that we miss what the other person is truly saying. This can keep us from living in the present moment, from being empathic for the person speaking. We are often so worried about having the perfect response and sounding smart, cool, funny, etc. that it blocks us from being there in the moment. So many times, I think I’m a great listener but truth is, I’m guilty of this.

Those technicians didn’t have the answer to everything. They probably saw my diagnosis, knew the statistics, what I would have to go through and could have very well treated me like I was a hopeless case but they didn’t. Instead they hoped for someone who was a stranger, brought joy into dark moments, and made a scary situation lighter just by being there. They put aside their knowledge and own experiences to be there for me, in the present moment.

So this is my weekly reminder to myself and anyone else reading this to be the one. The one who listens,the one who is there, the one who carries joy everywhere they go.

The world is full of good people. If you can’t find one, be one.

Mother Teresa

I guess I’m not invincible

“I’m thankful for my struggle because without it I wouldn’t have stumbled across my strength.”

Anonymous

Something I hate to admit I have is I have a weak immune system. I like to think that I’m strong, healthy, and invincible but instead because of my medical history, i’m quite susceptible to things and it takes my body a while to bounce back. Also, when I was younger, I was more resilient but with age, even though i’m not that old, it takes time, rest, and patience. So after two nights of little sleep last week, it took me about a week to fully recover.

Typically I have a high pain tolerance and am usually pretty good at ignoring minor discomfort but when my nose is stuffy or i have sinus pain, it’s like the world is coming to end. (at least mine) Leg cramps, muscle aches, etc. I can pretend those don’t exist but a stuffy nose is the worst. It’s hard to eat, drink, breathe and sounds like Rudolph with a mitten on my nose.

As I was trying to rest earlier this week, thinking about how I was going to be the first person to die from a stuffy nose, I was reminded of my lack of patience and ungratefulness. I wasn’t grateful for a stuffy nose but quite honestly, I allowed myself to act miserable because of it and was not in a very pleasant mood. That made me pause and make a mental list of 10 things I’m grateful for. Unfortunately, it didn’t fix my nose but it did fix my attitude. It never ceases to amaze me how a little gratitude rewires the brain to focus on all the positives and the blessings in our lives instead of the negatives or what we lack. Along with worrying about what I lack, I tend to fall into this trap of never resting or being still. I always need a to do list or to be productive because to me, a day without accomplishing something is a waste of a day. Something that stems from this is my need to be in control and when I can’t control something I lose patience. I needed a stuffy nose to remind me of this need for rest and to let go because I can’t control everything. My body needed rest to heal, not busying myself with a million other tasks and trying to control everything. Sometimes in order to regain control, we need to have patience and rest first.

“Have patience with all things, but chiefly have patience with yourself. “

St. Francis de Sales

Better late than never resolution

“Your biography is not your destiny, your decisions are.”

– Tony Robbins

As I get older, time seems to fly by quicker. This morning, I realized we’re almost two weeks into January 2024, how’d that happen?! It feels like it was just October. Some people put such emphasis on new years resolutions and in the past I have too but this year, not so much. The thing is with life in my opinion, every moment is a choice. Every day is full of choices. Resolutions are good but sometimes I feel like they focus so much on the big picture that they lose sight of the present moment and on the small decisions at hand. Have you ever felt stuck in life and frustrated by your current circumstances?

The other week, I had a bad day for no particular reason. To all The Chosen fans, I definitely had a Little James moment that lasted all day. I woke up in bad mood, was irritated by pretty much everything, and was overwhelmed by thoughts of the future and things outside of my control. And of course, time seemed to drag on. But as I was getting ready to go to bed, I promised to myself tomorrow would be better and it was because I made that choice. The anxiety, fears, and worries about the future were still there, I just decided to leave them in the future and force myself to be grateful for the present moment. Sometimes life is not exactly what I had in mind and the cards I’ve been dealt aren’t what I was initially hoping for but at the end of the day, at least I have cards. At least I have this moment and this life I’ve been given even if it’s a complete mess somedays and I feel stuck.

I think we all have those moments in life when it isn’t quite what you expected and it doesn’t seem fair. But we have a choice in those moments, to choose gratitude or grumpiness, to choose hope or worry, to choose forgiveness or anger. Instead of New Year resolutions, I will be making daily resolutions to practice gratitude, live in the present moment, and to take life one step at a time. Will you join me?

“You may not control all the events that happen to you, but you can decide not to be reduced by them.”

– Maya Angelou

Be an encourager

“Kind words can be short and easy to speak, but their echoes are truly endless.”

Mother Teresa

It really is incredible how far a simple compliment or a kind word can go. I think we often overlook giving other people compliments or saying something encouraging out of fear of sounding crazy or thinking our little comment doesn’t really matter.

Recently, my church was awarded a very large grant I helped apply for. The application was actually due back in April, shortly after my dog Riley died. Although at that time I really didn’t feel like spending hours writing a detailed proposal, it turned out to be a great distraction and healing too because no matter what anyone says, it’s not just a dog. Thankfully there were two other incredible people working on the application too because it was a last minute push to make the deadline.

This week, our picture was posted on social media and a number of people said thank you along with lots of kind things. Writing grants is something I enjoy and is a gift I’ve been given. I know plenty of people who do not look forward to grant writing or aren’t the best with words but for me, I love being able to use my skills to help someone else.

It is always nice to be recognized for a big accomplishment or when we are successful but it made me think, why do we only praise and encourage others after big accomplishments? What about those moments when we aren’t so successful or moments when our achievements seem insignificant to most people? Something that is cliche but true is that many people fight battles we cannot see so be kind. Something I’d like to add is to be encouraging because you never know who might need it.

“Spread love everywhere you go. Let no one ever come to you without leaving happier.”

Mother Teresa

The simplicity of a straw

Faith walks simply, childlike, between the darkness of human life and the hope of what is yet to come

Catherine Doherty

There’s is something so fun about a straw! Maybe I’m crazy but I just love the simple joy of using a straw. Earlier this week, I bought these cute little “cocktail straws”, perfect for wine, tea, etc. They’re silicone, reusable,  and colorful. It’s the little things that make me happy. Due to losing facial movement at a young age,  it is pretty difficult for me to drink from a glass because my lips are not able to close. So using a straw is just infinitely easier for me. I can drink without a straw but it usually results in choking or dripping all over myself. Maybe some think straws are childish but I could care less. Most people grab their keys when they leave home,  I do too but also straws just in case. 

This past week, was the anniversary of when I started to experience side effects from radiation treatments and became physically disabled. That probably doesn’t sound like something you celebrate to most people but I felt extra grateful that day. 

Thinking back to that time honestly is a blur. I remember certain moments but I think mostly my brain told myself to forget other things. As I was reflecting on that time in life and the years since, having childlike faith and wonder kept popping in my mind. There’s a window in our church of Jesus and the little children, sometimes I like to imagine what it would be like in that window, to be part of that story. Full of simplicity, joy, and love. So often, I think we underestimate the power of childlike faith and wonder. Because of these traits,  children are more intuitive, grateful, trusting, resilient, and forgiving. Upon hearing my story,  people can’t get over how young I was and yet so strong. My age was aa blessing because I don’t know if I’d be as strong today. I owe it all to having childlike faith and trust. 

As we get older, I think we lose that childlike faith. We become jaded, we form grudges, create unfair bias, we get hurt and build walls to protect overselves. I am a professional at building walls when I get hurt but slowly I’m learning to approach those situations with the simple perspective of child. Sometimes I think we all need to let go of what we’ve learned or our negative past experiences. Instead, we need to embrace having childlike faith, hope, and develop an attitude of gratitude. 

Using straws may seem childish to some and I’m sure there are wine connoisseurs who would disapprove but everyone has a right to their own opinion; I like straws and not choking. 

Childlike in faith means the daily acknowledgement of utter dependence and that I owe my life to another

Brennan Manning

Enjoying the shallow end

“What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”

-C.S. Lewis

Sometimes I worry being a very simple person, someone content with what they have, causes me to be shallow at times. I am a firm believer in seeking the truth but don’t need to know everything, understand every little detail, or ask a million questions in order to be happy. I believe there are many things in life we have to take for face value, not try to force change or worry about always having the answer. My approach is very much like that with my faith, there are plenty of things I don’t understand completely but I believe and trust.

The other day, I was listening to a friend go on and on about a topic, having to over-analyze and complicate it by forcing deep thoughts on what is actually a simple idea. I just thought “Why are over-thinking and over-complicating this? Why in seeking to better understand, are you trying to force change and choose to focus on the negative instead of the positive?”

Sometimes I think in seeking the truth, we end up getting even more lost. By over-analyzing and over-complicating, we allow anger, fear, hate, and other unpleasant emotions to enter the equation; developing opinions and creating division between others. We get sidetracked by all the little details and lose sight of the big picture. Sometimes I wonder why we can’t be more like children? Why can’t we approach life with wonder, awe, and simple childlike trust? Why must we over-complicate our lives? This week, I’m going to focus on being childlike not childish, care to join me?

“A childlike mind in its simplicity practises that science of good to which the wise may be blind.”

Friedrich Schiller

Do “I have to” or do “I get to?”

“Do not free the camel from the burden of his hump; you may be freeing him from being a camel.”

GK Chesterton

It’s so easy to fall into the trap of comparison; comparing yourself to others and wondering why you are not as successful, creative, or more like your peers. The temptation to compare yourself is everywhere, in news, on social media, what you read, and even the people you interact with. We all have experienced this before when we get so caught up in the accomplishments or lavish lifestyle of others that out of nowhere self-doubt shows up in your mind and all feelings of self-worth go out the window. Sometimes I feel as though our culture has a tendency to reflect a mirror onto us and if we don’t reflect the image everyone else does then something is wrong with us.

The other day, I was reading something, trying to be educated, maybe learn something new, and I fell into this age-old problem. I thought because I am not like “them”, I must be amounting to nothing. This led into a spiral of not so great thoughts but mostly into thinking of the burden I am on others being physically disabled. Years ago, I was talking to someone and they made this tiny comment that had quite a negative impact on me and sometimes still floats around in my mind.  Just goes to prove words can be dangerous if not used correctly and above all, just be kind.

Anyways, as we were making casual conversation, discussing life with disabilities, and caring for those with disabilities, they said “Oh you know, you guys with your disabilities can be such a burden.”  At the moment, I felt personally attacked and wanted to tell them to please take the knife out of my back that you just stabbed me with. Instead, I simply replied “Yes, there are often many obstacles we face much like everyone else in life but there are also moments of happiness, laughter, and joy, it all depends how you look at it. And when you truly love someone, you’re willing to make that sacrifice for them”.

That one, small comment has haunted me for years and echoes in my mind anytime I feel an ounce of self-doubt. I’m blessed to have a family and friends who never even consider me a burden. Growing up, the thought of being a burden was never a question. Life is challenging and burdensome at times but what is a burden can actually be a blessing in the long run. For example, it was a burden to my family to push me in a wheelchair around Disney World but it was a blessing to get to the front of the lines because of me. Okay, maybe not the best example but you get the point. 

Like many things in the world, I think the idea of burdens requires a shift of perspective. Maybe the real burden is your attitude and point of view? Do you approach a situation as “I have to” or “I get to”? 

“If your judgement is clouded, you must be carrying too many things which are being a burden to you.”

Yoko Ono

Outlook on a new sole

“Resentment is like drinking a poison and hoping it will kill your enemies ”

Nelson Mandela

It is time to retire one of my favorite pairs of shoes and not to sound like a typical female but I’m kind of bummed. They were broken in, comfortable and went well with every outfit. But after a series of stumbles/falls, it is time to part ways. Although they were broken in, they no longer provided support and there were several occasions where a shoe fell off mid-step and flew across the sidewalk. Thankfully, I had a backup pair because as I mentioned once before, shoe shopping is not my thing. Between the lack of sensation on one side of my body, dealing with foot drop, and other issues,  shopping for shoes is actually frustrating. Sometimes I wonder what it’s like to walk and not constantly worry about falling on your face.  Or wonder how new shoes could affect your balance. It’s such a struggle! Okay not really in the scheme of things but it’s one more thing to take into consideration and quite honestly, an inconvenience.  

Sometimes it’s the little things like buying new shoes, those little what ifs, often make me resent my disabilities and become angry at myself because my stupid feet, weak legs, and lack of balance cause so many issues. It’s frustrating! How easy it is to throw a pity party for ourselves. But what is more frustrating at times is it not my fault I’m disabled. I usually tell people I’m physically disabled as a result of my cancer because it’s an easier explanation which is true but not the whole story. The truth is the doctor in charge of my radiation treatments gave me 8 times over the limit I should have received. 

By the time I was 7 years old, I had undergone two major surgeries to remove a brain tumor that proved to be as stubborn as me. After the second surgery, my doctors seemed pretty optimistic but then an MRI just six weeks after the procedure showed the tumor came back and was bigger than before. So instead of doing surgery again, my parents and chose to try radiation treatments to destroy the cancer. The radiation destroyed the cancer but left me physically disabled and nearly killed me. It was like an atom bomb went off in my head, I know really awesome, right? The thing was my doctor overdosed the radiation and with that intent too. The radiation I received was new technology at the time and I was the youngest patient to ever receive this type of radiation so it was pretty risky. If all went successful, destroying the cancer and leaving no major side effects, my case would have been famous in the medical world and my doctor would have been famous too. Before the radiation treatments were even finished, he had written papers about me to present in conferences. My parents and I found out he rushed my radiation treatments for his own good; not out of a desire to heal, but out of a selfish desire for glory. He caused me to become physically disabled, and changed my life forever.

As you can imagine, this definitely caused some angry issues at a young age, to basically have to let go of things I hoped for my life and future and totally start over. Because of this, I really struggled with accepting my disabilities and myself for awhile. I didn’t like who I was and used anger and bitterness as a constant defense mechanism. As a result, I was an awful person to be around, always grumpy, negative, and constantly irritated. But as time went on, I realized this anger wasn’t healthy, it was weighing me down and infecting every part of my life. One day I came to the conclusion that I could either stay angry at my doctor or have the courage to forgive him and move on with my life. My anger and resentment was keeping me from accepting my disabilities. It was also a catch 22 because technically the radiation destroyed the cancer and I was alive, it just wasn’t what I expected. As I slowly forgave him, I started embracing my “new” life. I started to think that this whole being disabled thing wasn’t all that bad. It made me become a stronger person, physically, emotionally, and mentally. Being disabled gave me a completely different perspective on the world, one I never considered before. I realized through my disabilities I could help so many people, inspire so many lives by my example, and maybe even change how people view others with disabilities. I know most people think I’m crazy for saying this but I am thankful for my disabilities. They make me who I am and are part of my identity. For the first time, I started to actually feel thankful that my doctor messed up my radiation. It was with the realization of this that I started to forgive him.

Forgiveness is not easy, it is so much easier to hold onto resentment and grudges but when we forgive, it is like a breath of fresh air comes into our lives, creating a new attitude on life and letting go of what happened in the past. Even if you don’t think someone deserves your forgiveness, it is better to forgive instead of holding that hatred inside for all your life. Holding onto anger and resentment only creates a rift or brick wall between you and another but through forgiveness, we can truly love one another like we are called to do. Forgiveness allows us to say goodbye to anger, to let go of what happened, and start over anew. So as I said goodbye to being angry at my doctor, I say goodbye to my shoes and hope to start fresh with a new pair. Where in your life do you need forgiveness and a fresh start?

If we really want to love, we must learn how to forgive.

Mother Teresa

Random thoughts on hope

“Hope is being able to see that there is light despite all of the darkness.”

-Desmond Tutu

The year my dad passed away, it just happened to be Easter Sunday so Lent always brings back memories of those final moments with him. From the music in church to the crazy weather in Maryland and all the Lenten traditions, it’s hard not to think of him. 

In his 8 years of having ALS, I think my dad really struggled with his disease, the prognosis of dying early, and leaving a family behind. Being so young, we never discussed those things but as I get older, I can only imagine the constant worry, questioning, and fear that ran through his mind. Like “what will happen to my family?” or being angry/frustrated with himself and the disease. 

In the last year of his life though, something seemed to switch in him and he was less concerned with the future or needing to be in control of everything. He seemed to rely more on hope in the unseen, to trust that something better was yet to come, and to have found peace in surrender.

As I was thinking about this earlier today, along with other memories, I thought about how difficult this is for me. It’s so easy to get caught up in our fears, anxieties,  and dwell on the uncertainty of things we cannot predict.  It’s so easy to feel defeated and helpless when we are hopeless. Hope is such a simple concept that we often overlook it and choose to get rattled by the world around us and things we cannot control. It is in hope that we find peace. Sometimes hope may come easily, other times we might have to stubbornly cling to it, forcing it into our lives.  And when we stop hoping, the very thought of peace and trusting God tends to go right out the door. But when we choose hope, even when hope seems like a lost cause, we allow ourselves to find peace and the ability to trust in someone besides ourselves. 

“Faith is the realization of what is hoped for and evidence of things not seen.”

Hebrews 11:1