It's Time: A Memoir

By Barbara E de Leon Barton

It was set to be a normal Easter...uneventful. It turned out to be anything but. Upon learning her father has less than six months to live, Espi finds herself on a roller coaster of emotions and she struggles to come to terms with her father's bleak future. Discovering her own courage, she sets out on a pers

• Language: English
• Publisher: Barbara de Leon Barton
• Release date: Mar 9, 2023
• ISBN: 9798889266549

Book preview

PART 1

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CHAPTER 1

EASTER

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As I opened the door to our tiny apartment, something instantly felt off. Papa’s door was closed, and all the lights were off. It was 7:00 p.m. Papa never was in his room at this time. I gently set the Easter basket, a surprise gift from my boyfriend’s parents, on the granite counter. As I did, I remembered this year, Easter wasn’t just on a Sunday but April 1, rent day. I went over to our small brown kitchen table and matching chair. Sitting down, I opened my laptop to sign away most of my paycheck. I froze. On my laptop was a folded piece of paper with the unmistakable handwriting I knew from my childhood. My stomach turned as I hesitantly picked up the folded note and opened it.

I began shaking as I read the letter explaining to me that Papa had a bad fall and knew it was time.

At the age of ten I knew what it was time meant. He always talked about it in hopes of preparing me for situations where he would pass away and what I should do when that happened.

Every time this conversation would come up, I would nod my head, believing I was already prepared for how shocking it would be. However, shock doesn’t cover how I felt. My brain wasn’t working. It was like the air was being pulled from my lungs, and I could hear the pounding of my heart in my ears. It took me a minute to find my footing before I slowly rose from my chair. As I did, the sound of Papa calling my name reached me.

My brain screamed to go running to him, but it seemed my feet wouldn’t listen. I stood frozen in place for a heartbeat, then, step by step, I walked to open the door of his room. No amount of preparation and conversation could have prepared me for the sight I was about to see. It was an image I will never forget.

My hand fell from the door handle, and my breath hitched. My hero, my father, lay crumpled on the floor. His bed was at an angle with half of his body pushed up against the cream-colored wall.

I stared at him for a second, and then, like my feet, I finally could hear the screaming voice in my head. I sprinted to his side. I whispered, as if anything more would break him, Are you okay? What happened? as I struggled to help him into a more comfortable position. I reached for his cell phone on the nightstand. I’m calling 9-1-1.

My dad’s face stiffened, and he spat out at me in a harsh tone, I don’t want you to call anyone. I just want you to help me lie down to sleep.

I began protesting, You’ve soiled yourself. I need to clean you up.

He stood firm. You can leave my room now.

I bowed my head and did as I was told, exactly how I had always done, for the last twenty-one years. I was a daddy’s girl. Everyone knew it, and one of my biggest fears was disappointing the man I considered my hero. My heart ached to disobey my father and call for help, but my head refused to go against his wishes, especially if these were his last moments. My instinct told me I needed help and I shouldn’t listen to my father. However, I knew if I did get help I would break his trust in me and he would shut me out, just like he did the last time.

I could not have been more than seven years old when my father caught me in a lie. I do not know what I was lying about, but I know it was severe enough for me to remember the hurt in his eyes. He ended up using that opportunity to explain to me the value of trust. He explained trust was often given openly to people, but once it was broken it was hard to regain. My stomach dropped at the thought of my dad not trusting me. I proceeded to do everything in my power to regain it. I worked so hard to regain his trust, and even though fourteen years had passed, it seemed I was holding tight to the trust I had so diligently rebuilt.

That night I didn’t sleep. I lay awake, staring at the beige walls as knots coiled in my stomach at the thought of what would happen when morning came. My father and I were inseparable since I was born, even though he had been diagnosed with primary progressive multiple sclerosis (PPMS) in June of 1996. Though research was not very advanced at the time, it was still commonly said PPMS was one of the more aggressive forms of multiple sclerosis (MS). I often refused to read literature about Papa’s illness because I felt if I knew less about it the less I would worry. It also had become such a norm in my life, like when a friend’s parents have an accent and don’t notice it because he or she is so accustomed to it.

I knew the illness was there, but I was so used to it I did not give it much attention. Now, I understand it was more out of fear that I didn’t do more research and am only now able to fully immerse myself into the PPMS literature. For most patients with PPMS it is characterized by worsening neurologic function (accumulation of disability) from the onset of symptoms, without early relapses or remissions. PPMS can be further characterized as either active (with an occasional relapse and/or evidence of new MRI activity over a specified period of time) or not active, as well as with progression (evidence of disability accrual over time, with or without relapse or new MRI activity) or without progression. […] PPMS can have brief periods when the disease is stable, with or without a relapse or new MRI activity, as well as periods when increasing disability occurs with or without new relapses or lesions on MRI (National Multiple Sclerosis Society 2022).

Papa had started declining gradually since the day I was born. By the time I graduated from middle school, he was in a wheelchair. Even my earliest memories have hints of his illness, his need to frequently sit, rest, and sleep. In high school I was terrified of his driving because his ability to move his legs became almost nonexistent.

When the sun would beat down on Las Cruces, my dad would crank the AC in our house to try and prevent his exhaustion from increasing and his legs from jumping even more than usual. However, it did not always work. When those days would come, I would help him move his legs in and out of the car, take the lead on chores, and keep to myself a little more. At times, he would see the worried look on my face and would talk about when it is time. I always retorted, I know, but of course