Imposter (Random Book Entry)

The closet allowed her a moment of respite. A break from the sea of humanity bulging through the convention center doors since sunup. At 6 a.m. there were around 2,000 people collapsed on cots and standing numbly in registration lines, by noon roughly 5,000, and numbers like 8,000 were floating around by early evening when the Chronicle called. Eight thousand frightened people clutching children, cradling pets, crying loudly without shame or too shocked to say anything at all, everyone wringing water from their clothes and hair.

The media vest she wore bore the red cross signifying international aid and because of this, the weary approached her. They pled for wheelchairs, they begged for medications, they worried aloud about family dogs gone missing in flood-filled ditches. At some point a child was lost amongst the throngs but eventually located by a police officer.

Wendy was woefully unprepared for this sort of thing…this crushing need.  It was bigger than her, larger than anything she had experienced. She had been naïve to think she’d be helping in her own way by giving interviews about one of the greatest natural disasters in US history. Sure, she’d spoken with ABC, CBS, NPR and the Wall Street Journal, but she had no idea where those wheelchairs were. “Wow, look at you” texts from her husband made it worse. She was an imposter humanitarian; a fake.

Wendy hastened toward the closet door when the Chronicle reporter called. She pried it open, maneuvered around some supply boxes and sat on the floor, the weight of the day in a heap on dark gray carpet. She ran her pen back and forth over her notebook, doodling while insisting to yet another journalist that yes, there were sufficient cots ordered for flood victims.

She was wrapping it up when he entered. A man of about 30, with brown hair and dark eyes, wet like everyone else but very much in control of his emotions. Confident. In fact, she assumed he was a Red Cross volunteer, but there was no vest. He carried a large box in his arms and a duffle bag was looped over his shoulder.

“Hi, I’m Larry.” Wendy glanced at him and motioned that she’d be off the phone momentarily. When she finished the interview she returned the greeting. He sat next to her on the floor, dropping the sleeping bag and box.

“Hi, I’m Wendy. Are you a volunteer?”

“No. I just came in.”

“You mean, from the floods?”

“Yep.”

Wendy looked again. Absent from this man’s face was the stress bearing down on the thousands of other faces she had seen all day. He was almost happy.

“Are you okay?” she asked.

“Well, it’s been a tough day,” he reflected. “A tree went through my roof, killing my dog. I’d have stayed at my girlfriend’s but she broke up with me last week. So I thought I’d hang out here.”

Larry shared these things like he was recounting what he had for breakfast. No grief for his pet, his lost relationship, or even what was left of his house.

“Would you like a Bible?” he asked, shuffling through the box. Wendy’s eyes immediately darted to his arms, lost in the box as he quickly grasped for what he said was a Bible but what she was hoping wasn’t a gun. No firearms were permitted in shelters but if he carried himself out there as he did in here, a well-meaning volunteer could mistake him as one of his or her own.

“I’m good. I have a Bible at home,” she replied.

“Oh, please take one. I have plenty. This one is a paperback and easy to carry.”

Not wanting to offend, she accepted the stranger’s gift.

“You know,” he said, eyes intent, voice lowered, “storms will come and man’s plans will die, but the love of Jesus Christ goes on forever. We don’t need to fear anything when we have God.”

Wendy glanced at the door, wishing someone, anyone would walk in. Larry seemed harmless enough, and that born again experience in college helped her understand his thinking. But she was uncomfortable alone on the floor with this man. How had he gotten past registration? It was probably easy enough as the numbers of flood victims crushed through the doors.

“Will you do me a favor,” Larry asked. “Will you pray with me?”

Well, this was a first that day, Wendy thought. Wheelchairs, lost children, reporters already trying to dig up dirt on what was going wrong when so much was going right. Now a stranger on the floor of a closet wanted her to pray with him.

Then she remembered: Imposter. Fake.

She allowed him to take her hands. They bowed their heads. Perhaps she could offer comfort. Yes, Wendy could make one person out of 8,000 feel just a little better that night. This is why she was here, right?

Maybe...just maybe she wasn’t a fake after all.

I'm Sorry (random book entry)

“Closet okay? Closet? Mom? I said closet okay?”

“It’s okay, Joy,” Sarah responded, exasperated.

Where was this coming from, anyway, this closet okay obsession? For years – since Joy could talk, really – she uttered “I’m sorry” at every conceivable moment. When she rose, when she lay down to sleep, when family members were conversing over a meal (or trying to converse), if you were on the phone, or trying to peck out some words on your laptop or sitting on the toilet. “I’m sorry. I’m sorry. I’m sorry.”

The only words capable of breaking the chain were “It’s okay, Joy, it’s okay.” If you attempted something in the order of “Why are you sorry?” or “Stop it, Joy!” or even said “It’s okay” loudly or sarcastically, you’d regret it. Crying, screaming or a physical attack would ensue; best to just acquiesce. About five minutes later, though, the mantra would begin all over again. It drove nearly everyone in the household mad from time to time; usually family members played along to simply get by. Confused visitors would often chime in with the wrong responses, but eventually learned to play the I’m sorry game, too.

Sarah often wondered what she did in her daughter’s younger years to cause this particular phrase to bubble up from Joy’s subconscious, a rote banter associated with autism as a form of comfort and control. Sarah knew she was no mother of the year, often losing patience over the decades of shattered glass, public tantrums and physical abuse. She was especially ill-tempered during the nine years of diapers, with Joy’s penchant for laughing hysterically while smearing feces on the wall.

With a wince she remembered slapping Joy after she attacked her baby sister in the back seat of the car, leaving the infant screaming with a bloody face as Sarah frantically pulled off to the side of the road. That was the time a police officer walked up to ensure Sarah wasn’t abusing her children. She pushed the memory away.

Her mind sometimes conjured up the image of a man named Gary…a large, gentle, sweet soul who used to exercise with his elderly father at a local gym Sarah frequented in her 30s. Joy would have been around six or seven then. The man’s face and behaviors suggested some sort of mental impairment, and before long you could piece together the dynamic of a tired father who had given care for more years than he ever anticipated. Sarah and the other gym patrons would look on – sometimes amused, other times alarmed – while Gary would punctuate every bench press, sit-up and arm-curl with expletives laced into what one could only assume was a parroting of the things he had heard within the privacy of his home. When he was a child, perhaps?

“Gary, you broke the pipe and now it’s flooded! Goddammit! Goddamnit!” he’d roar while sucking in air between curls. Sarah would steal a sideways glance at Gary’s father, who one could only assume was the owner of those words. Each gym visit brought with it fresh, colorful hysteria over ugly moments of days gone by. There were the times Gary screamed bloody murder over crashed vases and others yet where he’d hurl f-bombs about paint on a wall. Green, specifically. One time he broke loose over bed wetting. “Gary! I can’t change those fucking sheets ONE. MORE. TIME. Piss in the toilet!” His father -- weary, gray, the embodiment of patience -- would try to quiet him, attempt to console him, but no consoling or volume control was to be had until Gary was done with his physical activity and ready to leave.    

“That will never be me,” Sarah sniffed to herself, alternating between empathy, sympathy and finally, judgement for the dad. “I will do it differently. Joy will never say those words.”

No, Joy thankfully didn’t absorb the vulgarity – although there was plenty of that – but she sure was sorry. So, so sorry, all the time. Sorry around the clock. Sorry for more than two decades. Sarah wished she could speak with that father now, approach him with a hand to his shoulder, a gentle look, eyes locked in mutual understanding. She’d tell him not to worry, he was among friends here, that no one could possibly understand his personal journey. But it was too late now, and she was, well, sorry.

Sarah returned to the present day. Why the obsession with closets since the hurricane and those days at the shelter? Where did the I’m sorrys go? She didn’t know.

“Mom?”

“Yes, Joy.”

“Closet okay?”

“Yes it is, sweetheart. It’s okay.”

Before

I wrote this essay on Facebook in late March 2019, after spending a week on Capitol Hill, advocating for research funding for tuberous sclerosis complex -- the disease that has robbed our sweet Mackenzie of a normal life. I've chosen to post it to my blog.

********

My last TSC post for a while.

The upside of spending a week in Washington D.C. with like-minded advocates who understand your journey is indescribable.

But to be successful on the Hill, there is a downside. One has to strip away the smile, the humor, the wall — built brick by brick, in my case for 25+ years — to communicate the horrors of tuberous sclerosis complex. And to share your story, you have to revisit what was stored away many moons ago to protect yourself, your relationships, your family, your mental health.

So today I will look at this photo, shared with legislators, one last time. It was taken when Mackenzie Mudd was age one — one week before her first seizure, when the monster called TSC reared its ugly head. One week and four days before we first heard the words “tuberous sclerosis complex.”

-It was before more than 3,000+ epileptic seizures ripped through her body
-Before 27,400 doses of medication over 25 years sometimes worked to control her symptoms, sometimes not
-Before the drugs wiped our baby out so badly that she’d fall over in fatigue, again and again, face bloody on the floor
-Before 30+ MRIs, CT scans and ultrasounds, most requiring anesthesia for behavior and pinning down her arms and legs for fear of needles and masks
-Before 12 surgeries, holding her hand in pre-op rooms while she cried and looked at us in horror...then, in later years, defeated resignation
-Before the overnight hospital stays and the EEGs with wires all over her head, waiting for seizures to occur so doctors could follow her symptoms...while she hit us and screamed
-Before the stares and comments by strangers in public places
-Before we would cover our bruises from the rages associated with autism
-Before the judgement of whether I was a good or bad mother from people who had no clue
-Before nine years of diapers
-Before marriage counseling
-Before shattered glass and concern over the safety of our younger children
-Before I learned who my friends were
-Before my faith was tested
-Before thousands of tumors grew within her kidneys and lungs and more grew in her brain
-Before her skin was burned purple by lasers again and again to remove facial tumors
-Before sitting on a hospital room floor, holding my knees and rocking back and forth in tears
-Before fighting with insurance companies to cover medications and treatments
-Before learning to advocate aggressively in the school system for our child’s needs
-Before I had to consider a future in which my daughter would never be able to live independently
-Before her younger sisters went off to college and she was left behind
-Before I learned the depths of love
-Before I became a better person
-Before I understood compassion
-Before I came to cherish dedicated doctors and nurses
-Before I understood the gift of a husband who doesn’t leave, despite a 90% divorce rate among special needs parents
-Before I learned the value of special education teachers, therapists and caregivers
-Before I realized that people have their own problems and understandably don’t need to hear about mine
-Before I learned to use dark humor to cover my pain
-Before I started to build a wall
-Before medical progress came, but not enough
-Before I learned there is a tribe of others who walk with me, with whom I can stop being funny if I don’t feel like it and cry about the shit our sweet girl goes through

Before this past week, where we joined together to advocate on Capitol Hill. Before 425 meetings to ask for research funding to help us find a cure.

The photo will now be put away, as will the memory of that naive young mom who once propped up her one year old baby for a portrait and told her to smile. Today is a beautiful day, after all...time now to look forward, not backward. Anyone know any good jokes? 💙

#march4tscresearch