My name is Allison O’Reilly, Stroke Survivor.
One weekend in the fall of 2010, I was a woman engaged in a full time career, my family and the challenges of daily life. Then over what should have been a normal day, my life radically changed. I had a brain stem stroke and was locked-in; all I could do was blink my eyes. It is not what you think of, when stroke comes to mind.
Locked-in syndrome (LIS) refers to a very rare outcome (only a few hundred cases are known worldwide) of stroke, caused by a stroke in a small but important area of the brain. This area, located in the brain stem, is a conduit zone for the brain’s motor pathways. It is different from other strokes in both its location and severity. The brain stem maintains breathing, houses the cranial nerves, and contains nerve pathways that connect your upper brain to the spinal cord. Individuals with LIS are conscious and can think and reason, but are unable to speak or move. The disorder leaves individuals completely mute and paralyzed. Persons with LIS can communicate using a communications board via an alphabetical code. My speech therapist at MNRH, Lauren, introduced me to a communications board to use. A person goes up, down, and across the columns with the alphabet, and the patient blinks at the right letter. The letters form a word or words as a way to communicate—not the easiest, and patience is required. Lauren also created a book of visuals of commonly used items to point to as well. This was not used for long, as I made rapid progress.
“You can feel all sensations. You can feel every touch on your body but are unable to move; all you can do is blink or roll your eyes up and down.”
LIS is often mistaken as being the same as being in a vegetative state, which is when people can open their eyes but are not aware of their environment. In locked-in syndrome, the person is fully aware of her environment, but cannot talk or move. In truth, you look different, have an empty look, and can’t do anything, but you are still the same person inside.
LIS is the most severe neurological condition to be admitted into hospital settings. Individuals with LIS have the highest level of disability among stroke survivors. Early recognition of the LIS state is important for rehabilitation. It is essential that these patients play an active role in decision-making processes regarding their rehabilitation (through blinking). LIS affects around 1 percent of stroke patients. For those who have had a stroke, there is no cure for locked-in syndrome, nor is there a standard course of treatment. It is extremely rare for patients to recover any significant motor functions. About 90 percent die within four months of its onset.
In a classic, complete locked-in syndrome, the ability to move all the limbs, the trunk, the neck and even muscles of the face is completely destroyed; you lie completely motionless and devoid of expression and speech. Breathing may or may not be impaired. Some people may need the assistance of a breathing tube and a respirator machine. Feeding must be given by a tube in the stomach. I had both.
Though, surprisingly, never in pain, it took a while to get used to the idea of being fed through a feeding tube. You begin to realize how much you have to depend on other people—to get dressed, wash, scratch an itch, everything. Being completely dependent on other people is a terrible adjustment to make. It takes time, even though everybody is so willing to help.
When you are locked-in, time goes by so slowly, it just drags by. I don’t know how to describe it. It’s almost like time stands still. It’s a terrible, terrible place to be. It’s hard, but you’ve got to have hope that you are going to get out of this nightmare. I was at the mercy of other people to care for my every need, and that was incredibly frustrating, but I never lost my alertness. I was completely aware of everything going on around me right from the very start. Thoughts of my life before the stroke—working, reading, friends—and, of course, my husband, Kevin kept me going.
My book “Out of the Darkness” is a personal look at the overwhelming challenges of a brain stem stroke, the painstaking process of relearning everything, the meaning of patience and the responsibilities that fall to a loving husband who wants the best possible treatment for his wife. It’s about what you learn about yourself when faced with adversity.
Out of the Darkness chronicles my massive stroke along with my will and determination to fight for my life and independence. It’s about what you learn about yourself when faced with adversity.
This is a story of inspiration, love and hope, as well as, sharing lessons learned during devastating time. I have been told that people think of me and how I am overcoming my challenges as a modern hero and invaluable role model for those with little aches and pains.
Every Stroke is different and every recovery is different. Out of the Darkness is not meant to downplay people’s motivation or willingness to recover; it’s my story of healing, as well as sharing lessons learned with others during this devastating time and to be a non-clinical voice for the Medical community, especially for younger Stroke Survivors.
I hope you will read the book and share it with those that might also find it inspirational.
It’s not the disability that defines you, it’s how you deal with the challenges the disability presents you with.
—Jim Abbott, Former major league pitcher
How would you deal with a stroke?
If it happened to a loved one or friend, would you walk away or towards that person?
How would you like people to react to you, if a stroke happened to you?