My Life in Boxes

AN AUTOBIOGRAPHY AND MEMOIRS OF CHEF EDIE M 11-18-87

These are series of short stories of my life, before and after my AVM surgery and recovery. Stories, from what I could remember for many years from notes to letters to myself; written on old Christmas wrapping paper used as scrap paper; paper towels, napkins and I even wrote on my clothing. I was strongly advised to write things down so I won’t forget. I’ve written notes during pre-op and post-op, part of my life story over twenty-eight years’ worth.  Silently I had put my life away in boxes for years, I never read nor looked at any my notes. I couldn’t, not until now.  old script

I am a mother, a sister, an aunt, a lover, an activist – violence against children. I am a woman who adores life, who loves to cooks and going on cooking auditions, always intrigued with the unknown, enjoys writing, have a passion for the arts, and helping those less unfortunate as much as possible. I had endured sexual abuse since the age five and it continued into my mid to late teens. I can be raw at times, however still keeping it real.  I have a serious cleaning disorder, I brush my teeth in the shower, I swear, I spit like man and I dislike rude people. I am not different than the average person, so what makes me stand out from the rest of the population, I am a survivor of a right temporal Arteriovenous Malformation (AVM) on my cerebellum. I had a Craniotomy 27 years ago.

 

PART 1:  The AVM

During my pregnancy and going on my third trimester my AVM became full blown during an outing at a public art show in Manhattan, NY. My surgery took place at New York Presbyterian/Columbia. During my “AVM recovery” I had to learn to live all over again-literately!!! I had an abnormal tangle of blood vessels in the brain that can cause devastating effects and it began to bleed. Most likely the AVM had existed in my brain for many years, perhaps for most of my life. I was fortunate to have received superb health care from doctors at New York-Presbyterian/Columbia and from Dr. Robert A. Solomon, Clinic neurosurgeon affiliated with The New York-Presbyterian/Columbia – Neurological Surgery and University Hospital.

In the late summer of 1987 the AVM in my brain began to bleed, causing symptoms for the first time. I began experiencing headaches that, in retrospect, were more severe than ordinary headaches. I had a pounding sensation in the right side of head. I went to my doctor, and he thought I had a cold. I slept allot because I couldn’t take muscle relaxants for the pain due to my pregnancy, but it got worse.

Then, mid-September of 1987, Sunday; the internal bleeding increased and my symptoms escalated. “It was Art Show day, which I was really looking forward to. “I woke up with my head hurting really badly. As usually, my pregnancy didn’t allow me to take any medication only Tylenol; I drove myself into the city and while driving into the Holland Tunnel my head was pounding. I threw up in the car. I managed to clean up and parked the car in the village. Avoiding being negative, I remember saying to myself, “it’s the pregnancy don’t panic”. I met up with my friends, we walked for an hour, I drank allot of water because of the heat, then suddenly I felt really sick, I thought if I ate something it would go away. But it didn’t. While I was walking back to the vehicle I felt a pop on my right side than a burst of bright tiny dots appeared, than total silent was creeping on me. I decide to go home and rest. The following day, I called out sick from work, called my doctor explained all that transpired, I was advised to go to the emergency at a New Jersey Hospital. The hospital physicians ordered an MRI, which revealed that I was experiencing serious bleeding in the brain. The AVM, only one to two centimeters in diameter, was large enough to be life-threatening. I was then advised to abort my pregnancy and immediately needed to have surgery. Being confused scared and without knowledge of the AVM I immediately contacted a reliable sort, my sister–in-law, Marion Marin who strongly suggested New York-Presbyterian/Columbia.Immediately, calls were made and within days I was transferred to New York-Presbyterian/Columbia.

Doctors at New York-Presbyterian/Columbia stabilized me but decided that surgery on the AVM should be postponed after the cesarean section delivery. The risk of coma or death as a complication of surgery is much higher of brain the team wisely chose not to operate immediately after the hemorrhage occurred.

After spending three weeks in the hospital, I was able to go home. My doctor told me he was handing my case over to Dr. Solomon, a neurosurgeon who eventually would perform my surgery. I left with warm memories of New York-Presbyterian/Columbia.

I faced difficult adjustments in my day-to-day life. It was critical that no sudden movement cause the AVM to begin bleeding again. “When I was released from the hospital, they gave me information about what I could and couldn’t do,” “I wasn’t allowed to do anything that would cause my brain to be active. I couldn’t lift, couldn’t paint, or work out. It was torture. It was horrible.

On November 18, 1987, I was ready for surgery. Dr. Solomon, who directs the endovascular neurosurgery program at the New York-Presbyterian/Columbia, operated on me. Then, over a period of nine prolonged and difficult hours Dr. Solomon performed a Craniotomy procedure to remove the malformation.

Dr. Solomon told me that I wouldn’t have to worry about the AVM for now and that I should know since I already had suffered an AVM that I may suffer another in my lifetime, regardless the outcome. When I left the hospital it was kind of a shock; I was out in the real world where everyone wasn’t as nice. During this period I was working with a major trading firm down by the World Trade Center area and I lost my job after the surgery.

I personally felt left to battle the demons of the world by myself; my life as I knew it turned upside down. I was seen differently by people; couldn’t work and constantly being discriminated because of my seizures episodes caused by the surgery; memory loss, rudeness was the new for me! Rejections, loss of friends, and sadly some family members turned away from me because they could deal with me. I lost my faith and questioned it many times. I suffered serious disability- loss of memory, I had to learn to read and write; almost instantly become a single parent and surrounded by domestic abuse didn’t help; and finally I moved hundreds of miles away to fix my untamed life.

I learned over the years of recovery that it was up to me to grow, adapt to new beginnings and be able to look out of the box. Which I did, years later I briefly studied Paralegal while working for a law firm; I worked for the Government | Army and then decided to become a Surgical Technician. In the next few weeks will be taking my state board exam for my license and I will continue my education, enjoying my family and friends, cooking, writing, volunteering and eyeing a possible future in the field of nutrition, health. “I am so blessed to have my life back after 27 years.” life is good again not perfect but good!

Chef EdieM

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Old Scripts Letters
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Grace, Compassion and Facing Hard Times

I never understood the true meaning of the word humble; I personally have taken this word for granted, until this past week. I found out that it means insensitive or obtuse. I also found out that obtuse is to be slow in understanding and feeling; and insensitive means to be deficient in acuteness of feeling.

Humility is also defined as the condition of being humble. When I look for the word humble, it means not proud or arrogant; (2) feeling insignificant, inferior or subservient. Proud means overbearing, haughty. Arrogant means (1) making unwarrantable claims to superior importance; (2) haughty or overbearing. Haughty means disdainfully proud. And disdain is to look upon or threat as beneath oneself.

Now that we have a basic understanding of the intricacy for the meaning of the word humility, where am I getting at? My main concern is to try to find out and understand the best I can what God means when He speaks about being humble. His word already says that I can only know in part because of my finite mind.

Times like these require us to show compassion and altruism to others; exhibit patience; and provide “teachable moments” to ourselves, to others and our children. Even in the face of events which are often beyond our control. I don’t know about you or what’s happening in your world, but my world I’ve seen, hunger, loss of jobs, and homes and senseless death and illnesses. We must show our family, friends and children that we can remain strong, and if we can, how can we do so with compassion and grace? We need to: listen; remain optimistic and calm; protect them; and, if possible, try to maintain normalcy. We also need to outreach to them and teach them about those who have overcome obstacles.

I, for one, also need help from time to time. I believe strongly in prayer. I found some of the answers I was looking for from family members, friends and a few from total strangers. However, it all came down to the same answers to helping others in need, no matter what that “need” might be.

…Create safety. The most important thing you can do is offer the person a safe place to fall apart. Be trustworthy, be present, be available, and be soft. Give them the warmth of your touch, the comfort of your words, and the gift of your listening.

…Refrain from offering advice until you know they’re strong enough to receive it (and/or they’ve asked for it). When a person is feeling vulnerable and broken, unsolicited advice can make them feel like they’ve failed or they’re not as good as you are at handling difficult times. Your advice may be valuable, but don’t offer it if it will make them feel small.

…Withhold judgment. Nobody who’s going through a difficult journey wants to be judged for their weakness, their tears, their messy home, or their indecisiveness. Bite your tongue even if you think they’re being foolish or immature. Let them be weak if they need to be weak. There will be time for strength later.

… Be an active listener. Let the person suffering do most of the talking and be fully present for what they are saying. In the middle of the struggle, there is nothing quite as powerful as knowing that you are heard and seen. Don’t try to fill the silences with platitudes or solutions. Leave as much space as they need to share their stories and work through what they need someone to hear.

…Offer empathy, not sympathy. Empathy lets a person know they’re not alone, sympathy leaves them feeling inferior. Empathy builds bridges, sympathy builds walls. People who offer sympathy (“poor you”) instead of empathy are usually doing it because they feel some need to elevate themselves above the other person.

…Share your stories to make them feel less alone, but don’t overshadow their stories. Stories are really important in times of grief or stress, but the most important stories that need to be shared at that time are the ones that belong to the person going through the trouble. Offer your own stories in a respectable manner, but only after they’ve had a chance to share theirs.

…Do not pretend to know EXACTLY what they’re going through. You can’t possibly know just what they’re experiencing because you are a different person carrying different baggage. You may have been on a similar path and felt similar pain (and that’s worth sharing), but each person’s path is his/her own. Let them describe what they’re going through rather than assuming you know.

…Let them cry and cry with them if that is what emerges. In any means, do not try to end their grief or fix their pain. Sit with them in the middle of that field of grief and just let what is being done what it needs to be. Nobody can take a shortcut through pain, so don’t pretend you’ve found one. Watching a loved one cry feels excruciating and you really want to fix it for them, but to show them the kind of love they need, you need to let the tears flow and simply bear witness.

…Let them know that they are courageous, even if their courage only shows up in very small ways. When the road is hard, just putting one foot in front of takes courage. Sometimes getting out of bed in the morning takes courage. Help them discover their own basketful of courage stories – memories of the times when they have shown courage that will help them rise to the challenges ahead.

…to my closing remarks, I want to thank God everyday for my son, Peter. Thankful for another day to live and to share my thoughts! Thankful that I know the true meaning of being humble!…

Christmas, with my son Peter 1990.
Christmas, with my son Peter.
Sharing special moments 121212....
Sharing special moments….