WREN’S JOURNEY: Relief From Torture

“What I’ve experienced Regina’s has been soothing, aiding, accepting, comforting—relief from a tortured existence.“ This was the beginning of unsolicited thoughts in reflection that later became the content for this update. It brought tears to Wren’s eyes thinking about how bad it was and how much better it is now.

 “If it was only one thing,“ she reflected. “I could overcome it, I could deal with it, I could push past it and push through it and be okay. But its so much more than that. If it was just extreme fatigue, If it was just pain, I could find a way. But Neurolyme, as with brain cancer, is an avalanche of symptoms that leaves us spent and broken with no end in sight. 

For instance, people can work through the flu, they take flu meds, deal with the symptoms and push through it because there is an end to the flu. We know it will not last forever. The same with migraines. The Same with mono though people are not expected to push through that.

Those who have had mono and the degree of fatigue that Lyme inflicts state that the fatigue of mono doesn’t even light a candle to the fatigue of lyme  and brain cancer. Yet the fatigue of these two conditions go on and on without end. Migraines and cluster headaches don’t just happen a couple times a month. They are relentless, all-consuming, unending. They become a dark constant companion. Mere words cannot express how bad it is.

You can’t write without extremity of effort. Its so hard and exhausting to even think. You are the walking dead. Every day becomes sisyphean in nature, a monumental task. I never had words to explain How bad it was until my head was clear again, and I found my voice again.”

Regina relates, “It took a Phd in communications who has her masters in English Composition—to finally put into words the suffering that I, too, have experienced. Robin is not cured of Lyme, but she is finally out of the torture of rising to daily expectations that pushed her into being ‘a dead girl walking, going through the motions of living.’ When Wren arrived at my home she slept for three weeks, awaking only for me to bring her food and to drink water. After three weeks, she finally connected. But all she could put into words back then was, “I just want ME back.” (She wasn’t mourning the loss of her career as a professor two weeks after she got her phd, the loss of her savings, her car, or that her student loans were ten years past due.)

“It’s been like being thrown a lifeline everyday rather than being told to stop drowning by people looking on from the shore.” With this analogy, Wren sums up the greatest pain that many with invisible disabilities face. “There’s nothing worse than mental anguish.” Mental Anguish springs from having no way of convincing others to see things any differently than they do in order to get the help you desperately need—even worse, when you are seen as being someone you absolutely are not and consequently censure, chastise, or inflict punishment at best...disparage, insult, demean, belittle, persecute or abandon at worst. Mental anguish is the greatest when it’s leveled unknowingly on top of suffering in the realm of the inhumane leaving the afflicted both downtrodden and brokenhearted.

“When you are in the gutter at rock bottom, every effort is reaching for the stars—and they are so far away. What I’ve experienced at Regina’s The First Emily’s Place, has been like salve on an open wound, All the tensed muscles have relaxed and I can finally breath again.”