by Judy Lynne Arena
With the help of family and friends and the gift of a second chance, I remember….
Last Memorial Day weekend I was awakened at eight o’clock with what I thought was a migraine headache. I had gone to bed late the night before, after a wonderful and joyous day and evening, but this Sunday morning there was something strange about my head and neck. The ache and pain was piercing, something just wasn’t right. I tried to ignore it, assuring myself that everything would be alright. I walked quietly to the front door and retrieved the morning paper. I was listening to the sound of the percolating coffee pot and reading the headlines at the kitchen counter when involuntarily my left hand released its grasp and the papers spewed to the floor. A sharp agonizing pain generated from deep within my skull, my left side became numb as the pounding and throbbing of my head immediately disoriented me and I became extremely nauseous.
Something was not only wrong, it was radically wrong. My bodily coordination and my cognitive reasoning were being separated and I seemed like but a spectator to a cruel drama as I just sat on the floor perplexed and in a state of confusion and puzzlement. I knew instinctively that I needed to summon help from my companion Bill, who lay only meters away, but I chose or was unable, for some unexplained reason, to act on my premise. As I reached out my right hand to lift myself by the vanity I became aware that my left arm would not obey its commands.
I lay on the floor and remembered just wanting to die as the pain was becoming so excruciating. I actually thought that I would die, yet I was powerless to call out for help to my partner. I just sat there unable to express my fears into words or sounds. At that moment I looked up and saw a figure in the doorway that was somewhat obliterated by the light. I was asked “Are you alright?” I somehow was able to utter the words calmly and in a soft yet determined voice “I think I’m going to die-we need an ambulance-you have to call 911”. It seemed like an eternity, but I would later learn that it had taken place in the time span of only twenty minutes.
My last cognitive thought for the next three days would be my directing the ambulance crew to take me to the nearest hospital. The morning of May 25th was a beautiful spring morning with a bright blue sky and brilliant sun, but I saw none of it as I passed in and out of consciousness throughout the short seven minute ride. Before the doors of the ambulance would open, I had lost all consciousness which I would not fully regain for three more days.
I would learn that we were met by medical personnel at the emergency department where no fewer than seven expertly trained staff members went through individual tasks in what would be a team effort to save my life. The next thirty to forty minutes, as I lay unconscious, were filled with confused phone calls among family and friends, as the people closest to me tried to make sense of the unbelievable rapid chain of events that families experience in an unexplained medical crisis.
A neurosurgeon soon arrived and within minutes reviewed the CAT scan results with Bill and even his untrained eye had no difficulty seeing the black blot on the contrasted transparency that hung backlit on the wall. The surgeon explained that I had experienced a blood vessel burst deep within my brain, very near the brain stem. Immediate surgery was necessary to minimize the damage, without which I would assuredly die. He pointed to the location of the bleed in proximity to the central nerve stem, and indicated the procedure was very delicate and if he were to touch the brain stem “she will fall into a vegetative state”. The procedure was agreed to and a new battery of phone calls to the family resumed. I was being wheeled into surgery as my brain, my very life, was slipping away, moment by moment.
THE INTENSIVE CARE UNIT-(ICU)
After several hours in surgery the doctor gathered my family, which had now grown to almost a dozen people. He explained to them that I had suffered a hemorrhagic stroke or brain aneurysm and he had performed a craniotomy procedure to drain the area surrounding the hemorrhage of blood that escaped from the ruptured vessel. He indicated that although the procedure had gone extremely well, the next 72 hours would be critical to my survival: a re-bleed, another stroke, infection or clot were all at risk.
It would later be learned, that I was born with a congenital abnormality in my brain referred to as an AVM (Arterial Venous Malformation). It is an irregularity of the meeting of capillaries in the brain where blood is normally transferred between pressurized arteries and the awaiting veins.
THE FIRST THREE DAYS
Over the next several days, as I lay unconscious, my family marked my progress mostly by what turned out to be involuntary muscle spasms, as I was completely paralyzed from the neck down, due to the bleeding and swelling in my brain. Slowly I would regain mobility on my right side; however the bleed had damaged and impaired movement in my left arm and leg as well as speech and cognitive functions. Despite insurmountable challenges, I had survived my first seventy two hours.
In the first days that I drifted in and out of consciousness, my thoughts were different than before. I was awakened from my three day sleep as the same person that I was before the bleed, only I now had a different brain. My world had changed and it would soon become apparent that my thoughts, emotions and feelings would be affected more than anyone could have anticipated.
They saved my life but to be honest at the time I had been in such agony that I was disappointed to wake up. I thought that I had gone through all this pain to die and was frustrated to still be alive, to feel the throbbing once more.
Along with the pain from the bleed and the surgery I was in a state of total discomfort and confusion. The tubes and needles were everywhere; I just wanted to be free from this entire burden. All I remember was being too hot, the false sense that everything smelled bad and a terrible taste, accompanied by this awful excruciating pain; and not being able to communicate my discomfort to anyone.
After a few days they removed the breathing tube, my high threshold for pain had vanished and as anxious as I was to have it detached I turned panic stricken. I had become afraid of needles, fearful of even the simplest procedures and I was now super sensitive to noise and light.
Physical therapy began almost at once as it is believed that timing is everything in teaching our bodies to respond to our new mind. Once settled in the rehab center, I began a vigorous daily schedule of physical, occupational, speech and cognitive therapies. I would have to relearn the most rudimentary tasks that we all take for granted, such as bathing, dressing, walking, and eating. I even had to relearn the reflexive process of swallowing liquids so as not to drown in my own nourishment. I was unable for the better part of the first month to take juice, coffee or even water without powdered thickeners. All modesty went out the window, but I was taken very good care of by both men and women and of course family and friends helped in anyway they could.
Through time and hard work, I continued to improve daily, though my left side was slow to recover. I graduated from a wheel chair to a walker, then to a cane and leg support. This of course was over many weeks of therapy, hard work and my own determination. My friends became active in my therapeutic rehabilitation and passed along my triumphs to both family and friends. No one let me rest or escape my scheduled classes. I now see it as a good thing, but at the time I found everything and most everybody to be an intrusion. I wanted to be left alone, however no one would let me be. Good thing – they all had a lot to do with my recovery.
I progressed ahead of schedule at the brain rehab center thanks to the exceptional care and attention I received from a wonderful team of dedicated doctors, therapists and health care workers. I was discharged two weeks earlier than originally planned, to continue my remaining months of therapy as an outpatient.
The doctors, though amazed, don’t tend to speak in spiritual terms. They don’t refer to my recovery as a miracle but note how “lucky” I was to survive and recover so well. I was lucky to have gone to a nearby hospital and received a quick diagnosis on a holiday weekend and to be so quickly triaged and that a skilled neurosurgeon was on call. I was lucky that the emergency surgical procedure was accomplished without incident or complications and I was lucky not to be counted in the one in four patients who do not survive an AVM hemorrhage. I was truly a blessed person and I was fortunate to be surrounded and supported by the love and concern of both family and friends.
I had been a healthy five foot ten 145 pound 52 year old, who neither drank alcohol nor smoked. I lived an active life, worked full time and in the summer liked to sun, sail and snorkel, while in the winter I would ski, hike and snow shoe. I was brought up in a health conscious family, my father was a holistic chiropractor, who insisted we maintain a low sugar, carbohydrate, and sodium diet—the normal culprits of hypertension and stroke. Unfortunately, all these preventative measures can not overcome what we are born with, but they have been acknowledged as playing a big part in my subsequent survival and recovery.
After another CAT scan and several brain angiograms, it has been determined that I am not a good candidate for conventional surgery to remove the remaining malformation due to its precarious location. I still face what will hopefully be a final procedure that will direct a focused beam of radiation on a very small portion of the remaining AVM.
I now am learning to lead my life as an independent, self-reliant woman. With the constructive support and encouragement of family, friends and a dedicated medical staff, I am becoming physically and emotionally stronger each day.
I have relearned to drive my car and again can tend to activities, such as grocery shopping and doctor appointments. I am able to spend time with my new grandson which has meant the world to me and in no small part has hastened my recovery. Watching my grandson learn to speak, feed himself and walk has held a special interest for me. I can see myself in him as he learns and I relearn new tasks and activities.
MY FOCUS AND OUTLOOK
I now focus less on the past, but live each day as it comes and once again look forward to my future. I don’t dwell on what was, but concentrate on what is, and instead of longing for the past I yearn for ten thousand tomorrows.
Prior to my bleed, I worked as a tireless perfectionist trained in several disciplines. I loved my work, my coworkers and patients alike. I enjoyed being a woman and concentrated, was even preoccupied, in looking my best. I now keep my hair short and am pleased with the salt-and-peppered graying that has emerged. Makeup has become a rare activity. I still very much enjoy being a woman, now just a natural woman. I am alive and again looking forward to enjoying life each day, at the highest possible level.