Releasing What Holds Us Captive: A Sibling's Story of Love, Surrender and God's Grace

by Renee Joy

The following is a reflection. A stark reminder of a dark season when hope was void and answers were few… When faith was challenged, but in the end held true.

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There’s the door. 

We’re here already? Wow. It’s not what I expected.  The building is modest at best. Old looking. No frills. No fancy signs. No nice brickwork. Plain really.

The front door is glass. There by the entrance is a sign with instructions: Press 138* and wait. When you see the green light, push.

I feel the stares from the solemn faces inside lining the hallway. No expressions to speak of. Not happiness or discontentment. Not even sadness really. Just blank stares. Probably wondering why we are here and who we’ve come to see.

The odor is overwhelming. A mixture of smells really. Disinfectant, urine, air freshener.  It mostly reminds me of a hospital. The smells I remember when visiting my sick grandmother. 

The hallway is dim, even though it’s day. Room 108 is the destination. The person behind the front desk isn’t paying attention. Even if they were, they don’t seem like the type to readily offer any assistance. At least there is an arrow pointing straight ahead: Rooms 100-115. 

Guess it’s this way. Even number rooms on the right; odd on the left. 103, 104, 105, 106… 108. There it is.  The distance between the rooms was short but the walk seemed long.

The sounds, the smell, the anxiety, the nervous questions. What will he be like? Will he remember me?

The gum. Where is it? Mom gave me two pieces to give to him. She said he’d ask right away if I had chewing gum.

Finally, we've reached the door. It’s open.

The door swings to the left; the beds are on the right. There are two of them. Weird and odd. But there he is. In the bed by the window. Lying straight and looking frail. No movement. Hands at his sides. Glasses smeared and speckled with dandruff and dirt. Hair slightly greasy and stubble on his face.

He could use a bath. Why haven’t they shaven him and washed his hair?

Finally, I managed to speak. “Hey Jimmy. What are you doing? Do you remember me? This is my friend Carolyn. She came to visit you too.”

The response was muffled. Fast words. Unrecognizable.

“Slow down. I can’t understand you.”

Still the same.

“Slow down Jimmy. I don’t know what you are saying sweetheart.”

Slower talk, but still hard to comprehend. Finally, a word I recognize.

“Smokin’. I stopped smokin’. I stopped smokin’.”

“That’s great,” I told him. “I am so proud of you.”

“Chewin’ gum,” he said excitedly. “Chewin’ gum, chewin’ gum, chewin’ gum.”

Luckily, I have the pieces that Mom gave me. He took them and slowly unwrapped one. That's when I noticed the dirt under his nails. Why don’t they bathe him? Don’t they care? 

“Are you married?” Jimmy asked Carolyn, both to our surprise. 

“No,” she replied.

“Will you marry me?” Jimmy asked again.

She bashfully laughed and let him know she has a boyfriend so she must decline his invitation.

“I love you, Nee,” he then told me.

“I know Jimmy. I love you too. Do you remember my husband John?”

“Yes. Chewin’ gum. Chewin’ gum. Chewin’ gum,” he said as he attempted to hand me one of his pieces.

“No thank you,” I replied and changed the subject by asking him if Mom had brought the balloon in his room.

“I made it,” he said.

“Oh really. I didn’t know you could make balloons. I know it’s your birthday. How old are you now?”

“I don’t know,” he said. “Am I 32?”

“No, I’m 33,” I told him. “So that makes you 35.”

The smell of the urine is all around. My chest feels so heavy, and my eyes are beginning to sting. Where did this lump in my throat come from?

Why God? Why take a beautiful person and reduce him to this? Loss of bodily functions, can’t remember any details of his life, stuck in a depressing old nursing home full of even more depressing people.

As I drift into my thoughts, the roommate came in - who seemed like a quiet person. I began to notice that everyone there has wheelchairs. There is one by Jimmy’s bed, actually. 

Does he really need it? Are the nurses nice to him or do they get irritated at him? What does he eat? What does he think about? Does he feel any pain? He’s so frail and sickly looking. He used to be so strong. A construction worker all of his adult life and strong. Now he’s weak. Does he really need that wheelchair? All these were thoughts running in my head.

He moved his leg and I heard a crinkle. It’s a diaper. My brother is wearing a diaper. That realization made the lump in my throat grow bigger. My eyes started to water, and I can’t hold back the tears anymore.

Gotta go. Gotta get out of here. I’m suffocating. My chest hurts and I can’t breathe.  I told Carolyn we need to go. I kissed my brother on his cheek and told him I love him.

Out the door. Down the hall. Numb. Man, I really hate that smell. We approach the exit to find people lined up at the door. What are they doing?

“Here comes someone,” we hear a man shout. We punch in the code to exit, and Carolyn is nearly run over by the roommate who has followed us in his wheelchair.  

I can’t care. I can’t stop. I need to get out of here. My heart is about to burst. Suddenly, I can no longer hold back the tears. Good thing we already reached the parking lot. No one sees or saw. I hope.

Oh, I don’t really care.  I can’t stop crying. My heart has never felt so much pain.

I felt like I am a horrible, selfish person for leaving him; for not helping Mom after his diagnosis. For not doing something.

His beautiful, dirty, frail face.  “Want some chewin’ gum? Chewin’ gum? Chewin’ gum?”

Oh God why? I don’t understand why.

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This memoir was written after I visited my brother for the first time in a nursing home. He had a rare form of Multiple Sclerosis that progressed rapidly. His symptoms started in his late 20’s and complications from the disease took his life at age 42. For over a decade, we watched him deteriorate, eventually being confined to a bed and on a feeding tube.

The first time I realized he didn’t know me was one of the hardest days of my life.

Jimmy was my best friend growing up. He was two years older and my hero. We did everything together. He was a kind and generous person to the end. 

At that time, to say I was angry at God is an understatement. For years I denied how I felt. After all, Christians aren’t supposed to think badly of God, right?

Jimmy was the one who was always doing good deeds – leaving food on doorsteps and giving the shirt off his back if needed. He sang in the choir, drove the youth bus, and continually shared the gospel with all who would listen.  Why would God cause him to lay lifeless in a bed for so long?

The more questions I pondered; the more bitterness grew in my heart.  I knew God could heal Jimmy. For whatever reason, however, He didn’t. Not in the way I desired anyway. 

I wrestled with my anger for far too long before finally reaching my breaking point. Face down on the floor, in the front bedroom of my home, I cried uncontrollably as I admitted my feelings to God.

Broken and ashamed, I confessed my anger and gradually released it to Him. Surprisingly, instead of being burdened with guilt, a huge overflow of peace consumed me. The simple act of confession and honesty set me free from my emotional prison.  I will never forget that day.

Maybe you can relate to having your own hurt, confusion, or anger towards God. It’s okay you know –  to be honest with Him about what you feel. You can cry, scream, and stomp your feet if needed. He can take your tongue lashing. In fact, He wants to take it – all of it. 

Our Heavenly Father loves us. He is not afraid of our pain or our anger at Him. In fact, He longs for us to bring it to Him, lay it down, and walk free in His healing grace. 

God understands our pain. He is a Father who watched His own Son be nailed to a cross to suffer and die a horrible death. And Jesus, our great High Priest, He certainly knows the depths of our pain. 

And do you know what? God did heal my brother. Not in the way I expected God to do it. Complications from the disease granted him safe passage from this world into heaven. No more suffering. And that, I believe, is indeed the ultimate healing.

Yes, this world is full of pain. But our God is still on the throne and He’s still in control – even in the hard times. 

How about you? What do you need to bring to Him today? He’s waiting with loving arms. 

“Dear gracious and loving Heavenly Father, thank You that even in our suffering we can know the depths of Your great love. Use the hard seasons to draw us closer and increase our intimacy with You. Cause us to see with Your eyes the eternal so that we can release the temporary and look with hopeful eyes to brighter days. Holy Spirit, our Comforter, be our comfort in times of trouble. Lord Jesus, keep our eyes fixed on You, the author and perfecter of our faith, as we face each day and until we see You face to face one day in eternity. In Your strong, matchless name we pray, Amen.”

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.  (2 Cor 1:3-5)