This is the second part of my daughter Melissa’s journey through traumatic brain injury (TBI). The beginning of this journey can be found here. In this section I address grief and loss, and how and when that occurred for me. Grieving is a funny thing (not literally), because just when you feel you’ve reached the end, that place of acceptance, you may suddenly find yourself back at one of the earlier stages. What a long, strange trip it’s been (thanks to The Grateful Dead) are the words that come to mind when I try to express this part of the journey (and this may be the hardest time I’ve had expressing anything). I write this at the risk of angering some people, but I can live with that. These are my simply my thoughts.
The words grief and loss just go together. When loss occurs grief follows. Most people automatically associate grief with loss of life, and that is certainly a valid assumption in most cultures. But, any type of loss brings with it a death of sorts, and with that “death” comes grief. Loss wears so many faces outside of death such as chronic illness, new medical diagnoses, catastrophic injury, moving or other transitions, job change, and so much more. Traumatic Brain Injury is a major loss, and grief naturally follows for both the injured and those who love and care for them. The injured most likely will never be the same person again. Something changes, even if it’s the realization of the value of life. Many times, the changes are life altering, and profoundly effect the individual’s ability to function as they did previously. That old person is gone, and a new one emerges. This is not always tragic or horrible, but a time of adjustment, relearning and acceptance.
“Bereavement is a universal and integral part of our experience of love.” ~ c.s. lewis
As I noted in Part one of this story, we began our journey through TBI at a different place than most people. Melissa’s story started for us when she was seven-and-a-half-years old, more than five years post injury. I remember the first visit our social worker made to our home after Melissa’s adoption. She asked us if we had grieved or were going through the grief process, because this was a tragic situation. I thought to myself, grieve what? What am I supposed to be grieving? I didn’t feel any grief. I felt elated. Melissa no longer lived in an institution, no longer was force-fed unnecessary sedatives, and she was part of a family who was thrilled to have her home. She seemed filled with happiness, wonder and a thirst for life, and she brought us an equal amount of joy. While we were all making a transition, and figuring out how to make this new family situation work, we certainly were not grieving!
If you haven’t been through an adoption home study you may not understand what I’m going to say in this paragraph. Home studies can be grueling. They pry into your private life in ways, and for reasons, I still don’t understand (and I’ve worked as a Social Worker in adoptions). So, after awhile you tend to have your guard up, and analyze each question they are asking and begin to wonder, what it is they are really asking. It’s not actually true (I realize now), that there is a motive behind every question that was specifically asked, though I had my suspicions at the time. Therefore, when our wonderful Social Worker (who was not doing anything but being considerate), asked if we were taking the time to grieve, I assumed she meant we should be. I answered what I felt she wanted to hear. Of course we’re grieving! And when she left I asked Ron what we are supposed to be grieving. He didn’t know either.
So, we carried on, getting to know Melissa, placing her in an appropriate school, meeting with her new doctors, specialists, occupational, physical and speech therapists. We were busy buying equipment, getting haircuts and new clothes, and adjusting to life with a third child; one with special needs we didn’t quite understand yet.
As we got to know Melissa we learned many things we otherwise would not have known, and gained an understanding of a world and culture we never knew existed. I learned about special equipment, the inflated cost of everything containing the words special needs, therapies, surgeries, specialized equipment, devices, toys, and clothing. I also learned about judgment, ignorance, and how inconsiderate, bold and cold people can be. I learned how to find joy in small accomplishments, and value in every person. I found sadness at times for what had happened to Melissa, and anger at other times for what someone took from her, but I still did not feel as though I was grieving.“
Specialists identify different stages of grief, and have anywhere from four to seven stages. It doesn’t matter to me how many stages there are, or if I passed through each of them, or bounce around and about within them. I know they start with denial and end with acceptance. And I know there are no shortcuts or avoidance–the only way is through. We live in a society that wants to believe we should side-step pain and go directly to positive thinking, skipping grief, and get on with life. This doesn’t work, unless of course you choose to live in denial. Good luck with that if it’s your choice.
I don’t think I was in denial. I believe I just accepted that Melissa is who she is. We met her after her injury, fully knowing what her injuries and challenges were. This to me, was full-blown acceptance. I had arrived already. No need to grieve, no stages for me, no loss, nothing like that. I’m good, she’s good, every human is perfect just the way they are. I believed that.
And then it happened.
“The cycle of grief has its own timetable. Until that cycle is honored and completed we are moving along life’s path with an anchor down.” ~Ann Linnea, Deep Water Passage
Melissa has two siblings from her birth family. They were separated at a young age and raised in different homes and families, but through the small world of the internet all have found each other now. I first “met” them through Facebook. It was there that I saw their pictures for the first time, their families and children. I was so happy to have found them, and to introduce them to their sister. Some of the similarities between them were amazing; their faces, eyes, hair, and smiles. Their differences were striking as well.
Suddenly I knew this feeling known as grief. Completely unsuspecting, it hit me like a ton of bricks! Her sister and brother are independent individuals who have the ability to choose what they do, how they do it, and what direction their adult lives take. I’m sincerely happy for them! But, I grieve for Melissa; her inability to make her own choices, the “perfect” unscarred beauty they possess that was her birthright, and the independence she lacks.
Don’t get me wrong; I’m happy for her too, and she is a happy, free-thinking spirit who I think is beautiful! But, what was taken from her on that winter day in 1986, forever changed who she was, who she had the possibility to become, and the freedom of choice I so deeply long for her to experience.
Grief and depression are not the same. But I felt sadness and it felt like depression. I was hurting and did not know where to turn. I traveled this road alone, because, who, at this time, decades later, would have imagined I would be grieving? I have a couple friends who have grieved the loss of a child, either by death or injury and I turned to them. This feeling finally started to make sense.
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” ~Elisabeth Kubler-Ross
I am grateful to those who have faced grief and come out as beautiful people, who have loved and loss, and open their arms and hearts to sharing with others. They are helping people, like me, find their way through this maze of feelings.
If I had turned to my spiritual friends I fear they would have told me that everything happens for a reason, that Melissa does have choices, perhaps she made a choice prior to coming into this life. Her job here may be to teach me what I needed to learn. They may be right, if this is truly what they would have said. I don’t know. I didn’t ask, because I didn’t want to hear that argument. As humans, I feel we need to experience a full range of emotions, and if not we will suffer. I believe suffering is optional, which is why I chose to fully grieve.
“I have found the paradox that if I love until I hurt,then there is no more hurt…only love.” ~Mother Teresa
I’ve forgiven, adjusted, learned, and accepted–-many things. I am on the other side and back to where I began on this journey. Melissa is my greatest teacher and truly an angel. She is beautiful, whole and perfect. I did not know her before, but I love the person who has emerged, and who she has become. I do not wish to change her. Do I hope for her to continue to heal? Absolutely!
From my perspective,
Pam
