Welcome to Memoir Salon, Session 10, which features an excerpt from Body Insubordination, My Struggles with a Rare Brain Malady by Heidi Morrell, a memoir by a former actress and filmmaker who became disabled due to a brain disorder, and has learned to approach the realities of her life with humor and new perspectives. The excerpt brings us into her world before her malady, when the lives of her premature twin infants were in jeopardy.
Short bio from the author: Heidi Morrell is a former television actress, short-filmmaker and college graduate in English. After being diagnosed with an atypical movement disorder, MSA, she had to retire from acting and deal with her condition, but she continues to write fiction and poetry. Several of her poems have been published in print and online journals. Heidi is married and has boy and girl twins, age twelve. Her disease has caused her to lose her walking ability, balance and speaking clarity. “Comedy is the key to facing reality,” she says. Being disabled provides a landscape of perspective where once, there was none. Please visit her website at Heidi Morrell
Short description from the author: My life took a frightening turn when my kids were but two and a half years old. Gradually I noticed my speech was slower and slower and I began to slur soon after that. Then, muscles in my left thigh began to hesitate on a walking stride. I feared the worse as I contacted my first neurologist, but a subsequent MRI turned out to be normal. What was happening to me? Was it all psychological? Not so fast, after a new neurologist and a PET scan, they had their awful diagnosis: Multiple System Atrophy. A devastating movement disorder with an umbrella term—Atypical-Parkinsons disease—that would put me in a wheelchair in little more than four years. Not MS, this condition can not really be slowed down or arrested as in that disease. I’ve had MSA for ten plus years, and I’m doing better than many, but it robs me of communication (speech) and the ability to walk freely. My hands are curling up and have no dexterity whatsoever, and my balance is shot to hell. Meanwhile my husband and I are trying to raise twins, a boy and girl thirteen years. My patient husband is my main caregiver, and I’m ever gratified he hasn’t left me. I love them so much. This excerpt contains a letter and an e-mail, and the whole manuscript, additionally, has poetry and other letters. Enjoy.
Excerpt from Body Insubordination, My Struggles with a Rare Brain Malady
by Heidi Morrell
***
Chapter 8: But for Them, My Children
They grew up with my dysfunction, my verbal communication stunted, and my sweeping frustration. And still they turned into fine kids; indeed probably because of it. But oh my. Somehow, I grow to actually believe I could check out, END IT, fly the coop; in a couple of years or three when I’m confined to a wheel chair and my husband or a home aide has to wipe my ass. That’s my belief, BUT for my children. So, not now, not when they’re so much a part of this today. As my quote at the beginning of the saga says, ‘comes a time’.
Am I honorable for wanting to stay around to see my sweet ones grow up? No way. But I do want to see them through, so ardently that I’m willing to suffer this inexorable decline. I’m also curious to see them evolve/transition into adults, with all the stumbling, sadness, triumphs and pleasures, and all the challenges required.
Dear ones,
Forgive me for all the weeping I foisted upon you. My unintelligible words in the mornings when you were off to school and I hadn’t ‘warmed up’ yet. All the missed fun at the beach, on a hike, or acting goofy in an ice-cream shop.
I never got to show you my cartoon voices, or after second grade, join in many of the volunteer activities at your schools. I’m so sorry. I’m sorry for the never heard wordy explanations I wanted to provide when either of you asked a question, they are lost to this damn disease, taken away. This infuriates me even more because each of you are so intelligent. So many opportunities, connections lost have been stolen from us.
But, what have you two gotten and shared with me (and your father)? Incredible joys and shared knowledge. So many movies and all our travels. My cooking and baking with you, the Christmas parties and our roaring costumes at Halloween. You reading to me at night, after I read to you as babies. I love the slow moving but special discussions we have and the knowing glance that signals a giggle fit.
Early on, when you were infants to about age five, I was able to influence and vocalize enough to guide your language skills and that, combined with good schools and your father’s speech, set you on your way. —Much love, your Mother
A fifth grade teacher, a very cool fifth grade teacher, got me thinking and I responded to an e-mail he wrote about teaching young kids:
Hey Rob,
I know of this mysterious place of happiness and crucible of myths! And if you mosey closer and peer over the walls it looks and sounds like the cries of unfocused energy, rubber balls hitting the pavement, TV thundering in the next room, and dish filled counters, with wrappers and spoons laying on tables, the smell of popcorn and chocolate and happy faces sighing into a pillow or chair. See the bikes strewn on the driveway, scooters and skate boards amid the piles, laughter and shouting, dirty socks and denials, carefully crafted excuses, arguments and deals.
This is the stuff of legend, the magical land of grade school -Spring Break; but you knew that all along!
Thanks for your note. Good break to you too.
—Eleanor and John’s Mom 5/2009
***
What amazing children! They were born at two pounds ten ounces and two pounds twelve ounces! Premature of course, they showed up at 29 weeks. This was two and a half years before I had any symptoms of MSA. I never would have gone through the IVF procedure—those stressful anguishing days of “Did it work?” Or “Damn, that’s ten thousand out of our pockets!”—if I’d known I would get this awful neuropathy.
At 29 weeks, Jeremy was just leaving to go to a show at a club when my water broke. Thank God it was at that moment because he often turns off his cell or can’t hear it when the show is on. He was just bending to kiss me good bye when, sploosh, all over the bed sheets!
Thus began a turbulent, trying chapter in my life, and in our marriage, and that maybe, when I think of it, prepared us tangentially for my MSA. Actually I have no idea if this is true; but the premature births did strengthen our marriage bond and we soon saw life as very precarious, precious and fragile.
My OB had sent me to a neonatologist to stem the bleeding of my ruptured third embryo (my body wisely decided it couldn’t deal with three implanted embryos). But obviously we didn’t want the third one’s demise to cause the other two to miscarry. It was tough going and I became tortured with every pad I saturated.
I had the Mozart music all picked out for the caesarian three months later: Kleine Nacht Music. I was awake during delivery, and had pre-clampsia (high BP and edema/swelling), so much so the anesthesiologist could not find a line in my swollen hand, nor could he find a good place to give me the spinal. I was bursting with fluid. Before that caesarian, someone MIGHT have mentioned this on my diet recommendation, while I was in the three day plus holding period, staving off delivery. They, the docs, want you to be given medications for the babies’ lungs to function more normally and to prevent delivery. I should have had a low sodium/salt diet!
I had a very powerful drug to stop the contractions of course, to prolong my gestation as long as possible. This haunts me still because it tore me up with body shudders, chattering teeth, shivering, and a complete speed-like reality.
After that nightmare, my OB suggested we change it to another medication; which was equally disturbing and horrific. But this time I was in a jelly consciousness, swooning, looping, zombie- like and a gauziness over all.
Perhaps, for me, who tends to overreact to medications, this imprisonment for three and a half days contributed to my MSA. What do they say? “Your genes(predisposition) load the gun and environmental factors pull the trigger.
***
The neonatal intensive care unit was our nursery for awhile. They were known as Morrell baby A & Morrell baby B.
You don’t want to name them when you don’t know if they will survive. And they stayed without names until about three or four weeks of age. Every morning we headed to the NICU, and every morning we didn’t know how they would be. The NICU doc would have called us if one had died, so we knew they were alive at least. But had one of them had a brain bleed or caught a bacterial infection, or not eaten or lost weight? They used gram weights because all these preemies were so little. Other mothers were there, consumed and distraught with far worse cases than ours. Some did die and some were forever spastic or deaf or developmentally stunted. In my opinion, a few times, they should have passed away.
They divided various NICU rooms by prematurity mainly, and that would be weight. One room I never saw, for the tiny one-pounders with all the problems and few of the chances. There were three rooms to progress through until they went into a bassinet, breathing room air on their own, maintaining their body heat and happily eating well, when they moved into a fourth room, awaiting discharge.
But they got stronger with each passing day. Well, Morrell baby B did. She never looked back, adding weight and, after just three weeks, breathing on her own. Baby A, the first-born, had to be transfused, and didn’t put on much weight. One day, I walked through the various rooms of the NICU to his incubator. Astonishing me and causing my heart terror, I saw my son, all white, not moving and presumably dead. He finally moved just as I called out for someone, anyone. I was light headed, gasping, and dizzy. This is how it ends, “not with a bang, but a wimper.”
“He needs a transfusion,” they said. My own new, gifted, neonatal pediatrician agreed. So we did the blood add for Morrell baby A. All that day, I thought how my newborn could pick up some deadly disease or condition through the transfusion. We were sooo stressed. If that NICU experience prepared us, our marriage, for my own disease three years later, I’d venture a distinctive yes.
After John came out of that one, he gained weight, moved from the ‘problem babies’ room to the ‘okay babies’ room, and I was quasi relieved enough to eat at home and make more milk. Fearfulness didn’t grasp me every moment, especially when those elevators opened on the sixth floor.
But not so fast; apparently God wanted us to go through another round of agony and terror. Soon after John graduated to the ‘waiting to go home’ room from the ‘okay babies’ incubator room, he contracted a bowel infection; E.coli to be exact. I came into and surveyed the room where Eleanor was in a bassinet, and hoped John had been put in one too. Instead, I went to him and “looked at the baby” (the mantra in the NICU) finding immediately that something was wrong.
He was breathing hard, had had several brady episodes where the heart stops, and didn’t look at all well. I found the nurse who had last attended him and wondered out loud why the high number of heart stops? He wasn’t sure why, but had started a blow by oxygen source because of the babies labored breathing. I was just choked up. I had to find a doctor right then, so I dashed into the main room. Fortunately, a group of doctors were clustered in consult on another newborn, and it included my own neo-natal pediatrician. I rushed up knowing I was interrupting, but Dr. K. took one look at my face and got it. I still had to convince him though, that time was of the utmost importance. I did that as I dragged him by the sleeve to John. The others followed.
They made me leave the room where John struggled…I was nearly dying inside when they told me to go wait in the Mom’s pumping room. I had showed Dr. K the grave condition he was in, minimally covering my anger at the way the nurse had left him with nary a concern! They rushed him back into the ‘problem babies’ room and began antibiotics while they cultured the bacteria devastating him. Indeed, now threatening his life. I called Jeremy immediately and told him to come and why.
Later that night, unknown to me (I may have gone home or was wandering from the tension), John did nearly die. He shut down and stopped breathing altogether. Dr. K was there still and called out, “Bag him!” to the nurses while poor Jeremy numbly watched. All the while, Eleanor, like many female infants, grew stronger. She was nearly ready to come home!
What if I hadn’t sounded the alarm about my infant? It turned out that those several minutes, and the immediate administration of those prophylactic (preliminary) antibiotics, might have saved him.
I pointed out to Jeremy later, the moldy wet facial tissue box perched on a table not five feet from John’s incubator. Besides the obvious mold, what other airborne microbes were imbedded there? Alarmed, we pointed it out to a nurse, but in retrospect we should have called in a supervisor and raised hell, maybe even threatened a lawsuit.
The NICU experience was a sobering learning curve that I wouldn’t wish on anyone. Overall, the staff was competent and hardworking and most of the doctors were excellent. While there in the NICU, Jeremy and I often talked about having that job, day in day out, with brain bleeds, transfusions, one pound babies with little skin, and a steady mortality rate. Many nurses can’t take it for more than a year or so, and I clearly understand why.
***
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