Priscilla Barnes
One aspect of grief that no one anticipates:
The weight of trying to believe that things will not always end in pain.
Realizing life is the day by day, and we have to let go of the outcome in order to survive. Trying to control the outcome will only end in heartache as we, in fact, can’t control it.
When my dad had a stroke, I watched a strong, independent man become completely dependent. As a nurse, I took over the medical aspect to much of his care, which involved a lot of fighting and advocating.
He was in and out of hospitals and facilities from September 2019 until he was discharged prematurely due to lack of insurance coverage in 2020.
Although aggressive physical therapy in rehab hospitals can provide healing and he was showing signs of being able to walk again, we were sent home. He had the wrong type of Medicare. And wasn’t yet approved for VA assistance at that time. Despite the fighting with Medicare, the “world renowned” rehab hospital, and doctors involved in his care, we were discharged.
As a means to try to control the outcome, to get him to regain what was lost (which research has shown can happen during the 18 months after a stroke), my family and I relentlessly tried to provide adequate care and recovery for him in the wheelchair accessible hotel room my parents moved into after selling their lovely home.
Then, one year after his stroke, he suffered a seizure. I had no idea strokes could lead to seizures. The event required my brother and I to provide CPR to my dad, something I never imagined would happen.
His care while in the hospital was fair, but neglected as it was during Covid and we were not allowed at the bedside. It took a lot of over-the-phone fighting to manage.
He again suffered a seizure a year later at home while I was with him. He again required CPR.
During that time he also got covid, had multiple doctors visits, yet was approved for coverage from veteran’s affairs, and had many blessings that are easy to overlook in the midst of it all.
I, however, suffered the worst health of my life.
I had exerted everything I had into controlling an outcome for my dad. I couldn’t control the fact that he had had a stroke, but I could control my input. And I thought I could control his recovery so he could be what I wanted. Maybe if I gave it my all I'd get my desire: for him to walk again, to be who he was before the stroke, so I gave my all to try to control the situation.
My body, as a result, began to shut down. Hormones, gut health, thyroid, dental, they all suffered. It took years of repair to get it to where I am now.
Trying to control situations forces you to neglect listening to your body as you become entranced on the outcome. It becomes next to impossible to live spiritually because we shut out any sense of input that may not be in line with our desires.
I had shut down what my body was telling me. I felt it one day while running on the track. An immense sense of fatigue stopped me, however, I refused to listen. I kept pushing through until I finally went to see a doctor. And went through years of frustration on my own path to ultimate healing. And learned, too, that I was living in toxic mold. If only I'd listened to my body sooner.
One day, in May 2022, my siblings and I looked at each and said how it seemed life was finally calm. Our dad was stable, we had supportive caregivers to help manage his needs, and life was better.
Later that month, my mom had severe abdominal pain. In the ER, they found that her abdominal area was filled with tumors. She was diagnosed a few weeks later with stage 4 cancer.
As a means to control the outcome, I fought with social security. She, too, had the wrong type of insurance and MD Anderson refused to treat her.
If anyone deserved the best cancer care in the world it was my mom.
I fought and fought. I was determined to control the outcome because I knew what was best.
Nothing changed. MD Anderson continued to deny us. We took another path. My way was, in fact, not what was meant for my mom.
Although I have little, if any, good things to say about her oncologists we were forced to see, they were more conveniently located. And as a result of not going to MD Anderson we met one of the best GI doctors, and doctors in general, who cared for my mom all the way through her end of life. He was the best result of not being accepted to MD Anderson. Without Dr. Krill, I’m not sure what we would have done.
During the 5 months after her diagnosis, I refused to accept the fact that my mom could die. I believed that by eliminating that thought I would be able to keep her around. I believed that she would be healed.
She was not healed on this earth. She had severe pain, multiple ER visits, tubes to drain fluid, and two rounds of chemo that, in my opinion, sped up her body shutting down.
Still, I would not accept it. As a means to control, we continued to fight. On her last ER visit, the ER doctor informed me how severely sick she was. Even then, I refused to believe that she would die.
She passed away two days later.
What is the balance between letting go and putting in effort?
We need to fight for our lives, for those we love, for what we believe and know to be true.
But we also must let go.
My mom said that there was often pain before promise. That many times we might experience a painful experience before the promise we have been given is fulfilled.
I believe that is true, but staying calm in the pain is not easy.
Trying to control things is a sign that we believe we know better, that our way is best, and that no one, no even our savior, can provide. In an effort to prevent for seen pain, I did this repeatedly. And still struggle with it in the midst of grief.
When you suffer loss or pain, your body will try to prevent the repeat.
I still advocate and put forth my best effort, but have to remind myself that, ultimately, the creator of the universe is in charge of the outcome. And no matter what outcomes I experience on this earth, my ability to navigate them is only by the strength that he alone provides.
For I know the thoughts that I think toward you, saith Yahweh, thoughts of peace, and not of evil, to give you an expected end. Jeremiah 29:11 Expected could also be translated to hopeful.
Be still and know that I am God: I will be exalted among the nations, I will be exalted in the earth. The LORD of hosts is with us; the God of Jacob is our refuge. Selah. Psalm 46:10-11
In every ending, there is hope. Hope that we will not have pain forever. Hope that in our weakness, he will provide. Onward we go.
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