Isolation is my unwanted friend.
He showed up in 1994 and he has never left my side. Isolation took control of my life after others abandoned me. Healthy people aren’t comfortable around chronically sick people. They want playmates. The doctors along the way gave him more power by giving me diagnosis that they were unsure of, and couldn’t do anything about. The doctor who labelled me a hysterical woman and a malingerer gave him the most power over me. At times I thought I was crazy, but I knew I was terribly ill.
Lyme Disease slowly joined up with Isolation. Late Stage Nueroborreliosis and other co-infections created a thin veil between me and the rest of the world. I lost my brilliant mind, I lost my profession as a psychotherapist, I lost my ability to speak, I lost my concentration, I lost my athleticism, I lost the ability to drive. Over time the veil became a high thick wall. Isolation and Lyme got between my relationship with my friends, my family, my marriage, and most tragically of all my children. I gave up on seeing doctors, I gave up on life.
Once again, after two years went by, scared by my degeneration, I got up the strength and the courage to face doctors. I demanded the top experts in their field, and paid dearly for that. ALS, TIAs, Progressive Non-Fluent Aphasia. For which there is no treatment. The doctors left me to die a terrible death. They talked of palliative care. The walls closed on me even tighter, higher and thicker. Sobbing I went home to die. Planning my estate (what little I had), family planning, considering “self -deliverance.”
Six months later I had declined so severely. I saw a spark of light in my soul. I believe the angels directed me to go to that support group one Sunday. The support group was for Lyme. I barely made it from the car into the hospital cafeteria where the group meets. I sat shaking, lightheaded, alert. Isolation stayed behind, right outside of the door. For the first time, I had hope. I was surrounded by people who told my story. They had concerned look on their faces, and told me to go to a “Lyme literate” doctor right away. They said I had a very complicated case of Lyme. Go figure, I had been sick for 45 years.
That first appointment was surrounded by light. A very diminutive angel genius doctor had gone over my entire life medical history! The hope was bursting open. Isolation seemed like a long forgotten friend.
Eight months later Isolation was still by my side. The treatment is so heavy, and the disease is advancing. I can’t talk on the phone, I can’t talk in person. I can’t think fast enough to use assisting devices. People are still uncomfortable around me.
One year later I discovered a vibrant Lyme community online, blogging and Facebooking. My treatment is slowly starting to work, at least it has stemmed the tide of progression. Isolation still lives with me, but it is not a barnacle hanging on to me. I managed to travel across the US to join the Mayday2014 protest outside of the IDSA. My mother joined me, my aunt joined, my daughter joined me. I met so many friends from online, and new friends that are so lovely and courages and strong. When we are chronically severely ill, it takes a lot determination and luck to be able to come together physically. Such love, determination, spirit, and strength. The thick wall has turned into a veil again.
I wouldn’t wish Isolation on my worst enemy. It tries to reduce me to self annihilation. But the world and the angels seems to want me around. So many lives are lost with Lyme disease combined with Isolation. And tragically most of the people and children that lost their lives have not known that they had Lyme Disease. Even when we know we have Lyme Disease, sometimes it is too much; too much pain, losing our minds to dementia, no treatment, no support, Isolation, no hope in the future; and we choose to stop it. That is not my story, but for the Grace of God go I.
This post was inspired by Lisa Hilton and all the fallen Lyme Warriors. She has orchestrated major media awareness. Currently CNN is courting her. She is great Lyme Warrior for all of us. For the fallen Lyme Warriors, may you fly on the wings the angels…
I may have mistakingly called the author Lisa…I see this is Carolyn’s page. Please forgive me if I am mistaken!
I am the author of “Isolation.” My name is Caroline Trujillo. I can see how you would be confused between me and Lisa. No worries.