Tag Archives: Family

Family, Fear, Life

The best

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The sound of the barking dog brought me to consciousness. The morning was spent watching my youngest’s football game in the company of my oldest daughter, son and husband. The alarm that morning made me jump. The very first breath unsteady and painful. My nostrils flared at the exertion. I sat up and reached for my inhaler. I sucked in barely able to get the two pulses in. “You must move.” I willed myself.

The walk to the field hurt. The oxycodone was hitting nothing. I held my husbands arm hoping for his strength. I was light headed. I smiled at my fellow parents as I took the stand. The fake smile I was used to giving. I was exhausted. I closed my eyes and made a silent plea. I calmly reached for my mental respite. The sun beat down despite it being early morning and a late September day. There was no escape. We baked. I was cold despite the heat but the ultra violet light was so toxic. I will not give in. I prayed my long sleeves would protect me along with the sunscreen. The game was so terrific and the shy look from my sun on the sidelines made it so worth it. A memory for my sweet angel. The best.

The walk up the path to my front door was unbearable. I felt myself weaken every step. I carried on the silent conversation with myself wishing each step. A made it to the couch and immediately fell into a deep sleep. Flustered six hours later I was conscious. Pain seared me and again I repeated the same routine I have repeated over and over. The inhaler and the pain pill. Just carry me through a dinner with my husband and oldest. Again the best.

I have been sharper and more vital. A thought of maybe things are better. An emotion getting out of my head. I feel the tick of the clock loudly again. My body feels like it is again messing with me. I hope it is different but I flinch. I am no longer interested in the worst. I force my body, like a challenge to hope for the best.

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Tick Tock

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I hear the clock ticking. My eyes are like lead weights. Red rimmed with exhaustion they blend into my red cheeks. The rash itches. I stare in the mirror and see the wolf. He is here today. My body is battling so hard. My head swims. The pain pounds behind my right eye. My vision is distorted. Thinking hurts. I hear the clock ticking.

The news is playing. A report about male fertility…a clock ticks.  A report about the Stanley Cup…a clock ticks. The last day of classes…a clock ticks. But not my clock. I hear a clock ticking.

My neck and back burns. I feel the invisible blade as it weaves its way between my ribs. It hurts to move air. My heart pounds. My legs are weak. Emptying the dishwasher results in a fine patina of sweat on my brow. I am angry. I hear a clock ticking.

I crawl back to bed. My warrior body exhausted from taking a shower. Sleep easily overtakes me. I awaken my cat curled against me. Her warmth soothes my pelvis. I stare into the dim afternoon night. I hear my clock ticking. My body fights, its spears are drawn. I want to smash the clock into smithereens. I am angry.

Nausea greets me. I can taste my morning pills. I swallow three more pills. Two for nausea and one for pain. The inhaler takes away some of the fear. My husband checks on me wanting to “DO” something. There is nothing to be done. I smile a fake reassuring smile. He hears a clock ticking.

I curl into a ball. Gently I rock to soothe myself. Confronting mortality is too much now. Just like the small child. Today I am her. The lost little girl. I cry and rock. My head pounds. My thoughts jumble. I fall asleep yet again. I hear the clock ticking.

I wake and run to the bathroom. Well crawl. The lupus is kicking hard. My warrior body is alive and fighting. My nerves are electricity. My emotions are  raw. I am angry. I am sad. I breathe the thick air and it is unfriendly. I fall into another sleep. I hear the clock ticking.

Evening comes and I force in some food. “You have to eat” my two oldest children cajole. A warm grilled cheese and a vanilla milkshake soothes the burn in my gut. I wish it would salve the ache. I am brittle. I need. I need to be selfish. I want so much more. The clock that is ticking is mine.

Death an dying, Family, Life, Rape, Sex, Uncategorized

Sanctuary

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Amanda Tilton Sea Cliff1

Sanctuary: a place where someone or something is protected or given shelter. I thought about this tonight as I looked at the exquisite picture of home taken by Miss Amanda Tilton.

Sanctuary: a place where someone or something is protected or given shelter. What is sanctuary?

The idea of sanctuary has been elusive to me in my lifetime. The first memory of no sanctuary was a horrid birthday party at age 5. Creepy in a mansion in Bayville, my skin crawled as the puppet man played the piano and the children played musical chairs. My memories are in black and white. Flashes come but I still shake at the incomplete memory.

Another loss of sanctuary was being a 13 yo girl at the Orthopedist with my mom. Sitting on the exam table to get my cast changed. My mom leaves the room. She had her first heart attack. Mom’s can die. She lived to have 5 more heart attacks. But limbo world I lived.

The assault on my psyche continued into college. Not only was it an assault on my psyche but my person and my space. I can still see his face, smell his cheap cologne and feel his cruelty. My apartment was no longer that sunny place. A pretext to study, became an assault. No alcohol. No drugs. Violence and Power. I called a friend who dragged me to the hospital. I returned to class as if nothing at happened. The police strongly advised me it was not worth the pain to report. My senior thesis about “Date Rape” written in 1986 received a commendation from the President’s Office at Stony Brook University. I advocate for Sexual Assault Victims. Sadly today, not much has changed on college campuses. No Sanctuary.

April 2, 2006 my feeling of safety and security flipped as completely upside down as it could. A trip to the ER to confirm a mono diagnosis due to a bad blood drawer turned into a parent’s worst nightmare. “Mrs. Dunn, Can you come speak to me across the hall. Is there someone we can call?” The line remains vivid in my head. T-Cell Leukemia. But he’s just 6 years old.To watch a child endure the vicious testing, treatment, side effects of chemotherapy. To feel ineffective as a parent to your three healthy children who needed a mom, but was too occupied in keeping my youngest alive. To watch a marriage become one of convenience…two ships that pass in the night. Sex was hall sex where we both yelled fuck you at each other. No Sanctuary

And finally the invasion of my body by a cruel and miserable hateful disease Lupus. It attacks the Sanctuary I have all along. Me. For as this disease attacks my brain and body. As it steals pieces of my life, my job, my ability to drive, my memory, my strength, the ability to breathe, alters my relationships with my friends, my family and my husband, I will not let it steal my Sanctuary. Sanctuary is not a place but it is within each and every one of us. My Sanctuary is me.