alt=a hand holds out a glowing piece of a heart shining onto a person's face

A Piece of My Heart

I woke this morning around 4:30 a.m. thinking of my father. When I was a child, he was up at the crack of dawn watching the sunrise, drinking his instant coffee, and smoking Pall Mall cigarettes. Forever meddling in his shop or out in the garage fixing and arranging things, he always found ways to keep himself busy.

He was strong and vigorous, a man of honor, a Marine. A very gentle and kind man, he was the first man I loved. As inflammatory disease ravaged him, I watched his life slowly deteriorate around him. And, when he died, a piece of my heart went with him, forever broken.

A very intelligent man with Masters degrees in mathematics and physics, he taught high school mathematics in one of the roughest parts of Buffalo, NY, and loved his job. He fought for impoverished students, making certain 90% passed his exams, and giving 110% of himself.

In the 70s, during a teachers' strike, I stood at his side as he picketed for better wages and benefits. I visited his classes and ate in his teachers' lounge on the 3rd floor. Weekends were spent studying as he was preparing lesson plans and printing out exercises on his dot matrix printer. Sunday nights after an early dinner, we watched an episode of Bonanza or Hawaii Five-O, and I was then sent off to shower and bed for classes in the morning.

Divorce and addiction

After my parents’ divorce, I lived with my dad and younger siblings. My dad spent years fighting addiction and illness. Life became complicated and messy. I grew up loving and hating him, fighting against and running toward him, as well as crying to and because of him. Our relationship was difficult; it was peaceful at times yet sad and hard. I truly loved him with every inch of my soul.

Always patient and loving, even as I raged as a teenager, my dad was everything to me. He was stricken with inflammation that tortured him. And he drank because of it. He had heart complications from ankylosing spondylitis (AS), with unrelenting irritable bowel. He didn’t sleep much and drank a lot. I was witness to this pain and alcoholism, something I was very angry about for many years, even after his death.

His spunk for life disappeared

Most nights, he sat in his rocking chair in the dark, smoking and drinking his whiskey, staring out the front window. He listened to the quiet and watched the late-night drivers pass, no doubt all the while wondering why he was destined to be punished. His pace and stride slowed as his limp increased. Everyday tasks became harder and harder to perform. There was less cooking, less eating, less getting out of his chair. The pain was evident on his face and in his actions. His knees ached and his back stiffened. Head lowered, always a hand on the back of his neck massaging away the discomfort.

My father's lack of diagnosis was a reason I sought one

Rarely seeking medical attention or treatment by a physician, he never obtained a formal diagnosis of spondyloarthritis. He was tenacious this way. When he had a heart attack (4 in total) or occurrence of a perforated bowel, he stubbornly headed home the same or the next day, never remaining in the hospital and refusing treatment. But it cannot be denied; he suffered for years with this disease, from heart complications, IBD, and severe full-body pain.

I had no clue the extent he suffered, not until I was diagnosed with spondyloarthritis

At 45 years old, in the worst flare of my life, everything I knew turned upside down. I'm slow to rise and I limp now, as well - bad knees, hips, and pelvis. I have such Achilles tendon pain it's hard to walk upon rising. And, my hand on the back of my neck massaging spasms and tight muscles is a common occurrence. I remember my dad holding his left arm, pressing his thumb into his elbow joint attempting to ease the excruciating pain - something I now do to ease tendon pain from enthesitis which is common with AS. It's difficult for me to sleep at all from this debilitating, incurable disease and I find I am up late at night staring into the dark, all so depressing and eerily familiar.

As much as I feel guilty and desperate depending on biologics, DMARDs, and anti-inflammatory medication for severe pain and inflammation, I couldn’t imagine facing this disease without knowledge of what I was dealing with and without treatment for it as my father did. I am terrified to suffer as he has. I don't want to have to resort to drinking away this pain, a very real possibility. He left me with the knowledge and strength of knowing I am able to cope in a positive way with chronic illness so I won't have to live in pain. With this, I feel he is present all around me, comforting me.

My dad died on February 14, 1999. He never made it to the new millennium, only 54 years old. I watched him go from being healthy and able-bodied to physically debilitated, forcing every inch of him to the brink of exhaustion, and drinking away the pain. I miss this man, my hero. The piece of my heart he took with him can never be replaced. But I feel comfort knowing he left me with some skills to better myself, to cope with this ailment. I would give anything to have him here as I struggle through the pain because he would understand.

I mourn his presence every day

I wish he saw what I did with my life, and that he was around for his grandkids. I wish he sought diagnosis and treatment. Most of all, I wish he knew I understand how he suffered, what he went through with this chronic illness, and that I am so very thankful he loved me. I wish he knew I was sorry for being so angry about his drinking, that I know why he drank. Then I'd see the kindness in his eyes and the forgiveness in his soul, and my heart would be full again.

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