Grief is such a specific term right… one people associate with the death of loved one or pet. Grief by definition is a deep sorrow. But grief can really be applied to any loss, right? A friendship that was once so close but is no longer. A relationship with a family member. A dream or goal. A vision of a certain lifestyle or experience. Even a significant change in circumstance. Loss for the times you would have shared with that person. Loss of the times you were supposed to share with that person.
Everyone says there is no time frame or right/wrong way to grieve, but at some point, we all expect the person enduring that loss to have a greater acceptance and not live in a constant state of grief. To have come to terms with the changes fate has thrown at them. But what happens when the loss is ongoing?
Not just a singular day or event, but one that is set on repeat?
experienced my first real sense of grief when my dad passed when I was 22. I felt like my world had ended. He was my best friend. We laughed together, shared stories that one may not typically share with their kids but our relationship was unique. You see, I was his primary caregiver from the age of 18 til his passing. So not only was I his daughter, but his nurse. The one to care for him through panic attacks when he couldn’t breathe, change surgical dressings, manage the ventilator that breathed for him while he slept and eventually while he was awake, stay awake when the night nurse was supposed to be there to care for him and offer me some reprieve, be his advocate when he couldn’t do it for himself. So when he died one Sunday morning, my world shattered and grief took hold. I don’t think I realized how strong of a grip grief had me in until I heard my husband retell it to me a few years later. It took about a year for me to work through those emotions and at the age of 30, I was able to talk about him without crying and feeling sad. I was able to smile about the laughs we shared and memories we had made. I was so strong as to tell my new therapist at the time, that I had worked through all of my father issues and that there were other underlying reasons for my visits with her. All of the pieces of my soul that had been covered up and wrapped so tightly, healed over from the heartache, were torn open again to be looked at under a different lens this time. One that would open my eyes wider and give a perspective I had never wanted to understand.
The day I found out I had HMERF, those gates opened, grief latched on and has been reminding me of its presence ever since.
Each day that I am reminded of a choice that the average person gets to make that I don’t. I grieve the freedom of change and choice. I grieve the ability to take risks. I grieve the life that my husband and I were supposed to have. I grieve the loss of new experiences. I grieve the relationships that I have lost because of this disease. I grieve the decisions that I have to make. I grieve the loss of normalcy for my children and grandson. I grieve the loss of growing old. I grieve the loss of trying new things that interest me but am no longer able to pursue as my physical body wont let me. I grieve the selfishness of others that reminds me of what my family sacrifices. I grieve being a normal mom.
That is how this disease feels. Like I am constantly recovering from a deep sorrow or loss only to endure it again or a new one that I wasn’t expecting. Like I am drowning in a sea of emotional distress and just when I get to tread water for a bit, another wave hits me pulling me back under.
am grieving and no amount of counseling or meditation is going to change it. I am grieving and make no apologies for how I or my family handle that grief.
