As I walked down the corrider of the hospital looking at the paintings, people I thought to myself…Do they know I just said goodbye to my sister? Can they feel my heartache as they walked past me? It took me a few minutes to find my car, as I was disoriented and emotional. Driving home was as if there was no windshield in the car, everything was crystal clear, 3D, colors of flowers were vivid, the sounds of other vehicles were rumbling…surreal, a dream, clarity after a long storm. For the third time in my life I have been priviledged to not only accept but understand why everything had happened the way it had, and that things are just as they should be. Upon arriving home I received the phone call that she had passed. It’s over…
An hour before I sat in a chair in my sister’s hospital room listening, and for the first time in my life, hearing my father share the tragic story of my sister. I sat spellbound. It was so surreal. A topic that had been taboo for years and was of immense pain for my family was now being told to the caregivers that had been with Karen for 8-10 years. I watched, as my dad held Karen’s hand, stroking it softly, very matter of factly share that 50 years ago when my sister was 6 she was wrongly being treated for strep throat….she had spinal menangitis. 50 years ago their beautiful, bright, active little girl left in an ambulance for Boston Children’s Hospital. She had slipped into a coma. There was no visitation rights but they could call 24 hours a day and talk to a doctor to tell them her status. A month later they received a phone call that Karen was ready to come home. When she came home she could only move her eyes, that was it. Intense rehab and physical therapy, she came back from that, able to walk and talk again. They were told if she could go a certain amount of months, days without a seizure, she would be okay. Unfortunately my sister started having grand mal seizures, violent seizures that slowly took away her right to walk, talk, paralyzing her left side, teeth knocked out from impact, even though they had tried putting a padded football helmet on her for protection it didn’t stop the damage, it couldn’t stop the damage. Immeasurable scars of the many stitches she had to close the wounds from falling, from seizing. Fifty years ago my sister’s sweet innocent life came to a halt, she was now the victim of an illness that would slowly strip her of everything.
I could feel healing in his voice as he told the story, relief was imminent, the 50 year tragic saga of a beautiful little girl whose life was stripped away…Why couldn’t she die then? Why must she endure a life of debilitating illness? Why wasn’t she spared of this? I watched, all eyes on my father and my sister, I listened to him share about all that they had done to try to help her unsuccessfully. My sister was near death, her eyes were slightly open, my gentle father holding her hand with one hand, rubbing her arm with the other. The sad, story painstaking decisions, heartbreaking tale that reared my family dysfunctional. My mind slipped back to my therapist 25 years prior…Are you sure your parents aren’t alcoholics? I would like you to go to an Adult Child of Alcoholic (ACOA) Meeting. My parents drank once a year on New Years Eve, but upon finally arriving at a meeting, picking up a flyer with 20 characteristics of ACOA, I had 19 and now I know the last one was just denial.
“If I get sick, are you going to send me away too?” I remember asking my parents when I was 10ish. Remember the topic was taboo, yet Karen existed, my sister disappeared out of our lives and wouldn’t resurface until years later. With four younger children to care for, and only after she looked at us as if we were strangers, not receptive to being home with us, 8 years in the poor house pouring money into anything and everything to help her, my parents turned my sister over to the State of NH, she became a ward of the State. Everything was falling into place, like 25 pieces of a jigsaw puzzle that you have been looking for for 50 years, try as you might, they were not to be found.
At 15 I had a car bought and paid for, waiting diligently for my 16th birthday when I would get my drivers license. The first person I went to see, without telling my parents, was my sister Karen. She was then at a horrendous place – Laconia State School. Perhaps one day I will share more details with you, right now I am trying to take in everything that has just transpired in the past 5 days, and there are some things too painful to talk about.
My father continued his story. Still spellbound I was thinking about the few minutes prior to that when my head was in his chest, his arms were around me as I sobbed. “Soon she will be at peace, soon she will be going straight up to heaven Donna, she earned her wings long ago”. He shared how when the State closed the hospital and clients were put into group homes, how she had been neglected at times. New shoes, coats, boots, even a stereo given to her from my sister Darlene was stolen. What kind of person would steal from a handicapped person unable to talk, walk or at this point in the story, eat? When the time came that my sister, whom loved and enjoyed food like most do their children, and being one of the few things she could do, could no longer eat, now on a keto diet to help relieve her of the double digit grand mal seizures she would have each month, a DNR order was ordered on her medical records.
50 years ago there was very little help for families who had handicapped children. 50 years ago there were no pills you could swallow that would stabilize your mood, helping you to live through some of the most painful times of your lives. There were no support groups, respite, nothing to help the families, the answer was to institutionalize them.
Thinking how I, in my teens, judged my parents on the difficult decisions they had to make that took Karen from us, now I know the story, understand with empathy and grief why…it was to give Karen a better quality life where she would be taken care of, and to bring some normalcy to the home that now had one child perfectly acting out grand mal seizures for attention. That child was me.
My sister touched the hearts of many. As my family sat in her hospital room watching as mu;tipal peple come in to visit her, some whom go back 35 years of her care, there to say goodbye to this beautiful woman who has vocal chords equivalent to Bose speakers on full volume. My sister, handicapped, unable to communicate verbally, but whom now had 3 families, us, her caregivers, and the family in which she lived, brought so much joy to so many people. Her send off on her journey to heaven was one filled with immense love, the very love that poured out of her.
I love my parents, I respect my parents. After watching them lose their second daughter to the same insidious disease, I am in awe of my parents strength, what they have endured, the decisions they had to make, and how every night for 50 years they went to sleep knowing their daughter Karen was suffering. How exactly does one do that?
I didn’t cry as I listened to him, I thought of my sister and brother, wishing they could have been present to witness this remarkable scene. They, too, would have felt the healing that was taking place, and seen the relief coming to my parents as my sister lay dying. They loved Karen, we all loved Karen, everybody loved Karen. The closest sin she ever committed was accidentally hitting my mother over the head with something. My mom and dad will sleep tonight knowing, Karen is safe, Karen is home with her maker, Karen is out of pain.
No sooner had my dad left the room and was in the parking lot, planning to go get something to eat, my mom told Karen’s caregivers to call him on his cell and to come back upstairs. Three breaths later my sister died.
Rest in Peace Karen Lee Lucier, Rest in Peace. You so deserve to be in this better place even though we and numerous others are going to miss you.