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hey”ve been called lazy and crazy. That is what these two young people, Miranda Rae Hunt, 20, from Clear Lake Riviera and Nick Farrar, 16, of Paradise have in common. They”ve also been called spoiled, indulged and been misunderstood.
Miranda loved to play basketball; she played for Lower Lake High School. She also ran cross country and she volunteered at the Alzheimer Day Care. That was before she got sick, really sick. These days she says, “Naps are cool. I like to sleep. I think I”m part cat.” She smiles sweetly and speaks quietly.
“The Lyme disease makes me hesitant to start a conversation. I think, what if I can”t find the words and I embarrass myself,” she said. She agreed to tell her story, “If I can remember it,” she laughed and said, “That was cognitive Lyme humor.” Everyday and moment is dictated by Lyme disease and has been for about more than seven years. Miranda was not diagnosed with Lyme until she was 17.
Nick contracted Lyme before he could verbally express the pain. He was 8 months old.
“When he was a toddler, sounds, smells and light felt like a million needles piercing his skin. He screamed out in pain. We didn”t know what was wrong, but we knew he hurt,” his mother Jillian Vinson Farrar said. She shared his pain. She passed the bacteria to her son unwittingly while breast-feeding.
“I knew I was bit on my breast. I thought it was a spider. I was afraid it might have been a brown recluse. I called my doctor”s office and the nurse said not to worry about if I didn”t see any red streaks. She said ?go ahead and breast feed your baby.” I didn”t know anything about ticks then,” Jillian said.
Lyme disease is caused by a bacterium called Borreliaburgdorferi. It is known as a spirochete because of its long, corkscrew shape. It is transmitted by the bite of a tick. Lyme disease can affect the skin, brain, nervous system, muscles, bones and cartilage. Symptoms include: chronic arthritis, fatigue, headaches, joint inflammation in the knees and other large joints, memory loss, mood changes, sleep disorders, abnormal sensitivity to light, confusion, decreased consciousness, numbness and tingling.
“It”s the co-infections that really knock you down,” Miranda said. Nick agrees.
The physically tumultuous and devastating journey is paralleled by isolation, depression and ostracism.
“I believed in the system. I grew up thinking the doctors knew everything. My wife kept saying something is wrong with our daughter. Thank God she kept advocating for her,” Don Hunt, Miranda”s father said.
Both Nick and Miranda say that friends and even some family members have walked away.
“I was taking a writing workshop and we were doing random writing. We were asked to write something about ourselves. I decided to write that I had Lyme and light sensitivity. A response from a woman participating was that she thought I always wore sunglasses because I was too cool for school, that”s when I knew I should probably talk about it,” Nick said.
“You can”t really make plans because you never know if you”ll able to follow through. If I have a bad day I cannot go anywhere. I have a friend who asks if I”m in ?Lymbernation,”” Miranda said.
A 2008 documentary “Under Our Skin,” highlights the myriad of complications, misconceptions and frustrations that surround Lyme disease.
The disease that was once referred to in a Connecticut newspaper as “Mrs. Murray”s Mystery Illness” is named for the town of Lyme, Connecticut. Entire families and then neighborhoods shared arthritic, flu-like symptoms. Some people had a bull”s-eye or red rash, some did not. Some suffered neurological damage or fog and others did not.
“I was 11 years old with one suicide attempt behind me, I was living in constant pain, and I”d just been told by a doctor that there was absolutely nothing he could do for me. I left his office hopeless. The news was equally devastating for my mom, because not only was she witnessing me battle Lyme disease, she was battling the disease herself so she knew first-hand what I was going through. My already debilitating depression did nothing but deepen,” Nick wrote in a letter when he was 15.
Nick is incredibly articulate and he says that he has days when he cannot form a sentence, add two one-digit numbers or walk across his room. This is referred to as Lyme fog.
Miranda”s mother Rene? wrote in a journal at the onset of the illness, “There were bouts of pissy-ness. There is a nursery rhyme that is about ?a girl with a curl in the middle of her forehead. When she is good, she is very, very good. When she is bad she is horrid.” That was my daughter. Angel to demon in 0.6 seconds. When she was sick … she was sick. When she was tired … she was tired … when she was mad, sad or happy, she gave it 100 percent. Each episode seemed to be followed by a real good nap. It was cause of great heartache. What kind of mother am I?”
Future academic and career goals are difficult to make. The desire to succeed is painfully present in both Miranda and Nick. The energy required to reach their goals is too often absent.
“It”s like a video game character, once you use up your energy bar, you”re done,” Nick”s father Dennis said. Miranda laughs at the description and says she wants “energy tokens” for her game.
Nick says one benefit of having limited energy is that he doesn”t waste it.
“Our family doesn”t argue, because we don”t have the energy to focus on the little things. We appreciate the good days and plan our time and activities carefully; everything has meaning,” he says.
Jillian paints and hangs messages around the house to inspire. Monroe, the beagle romps with a bounce in each step from person to person. Aside from the physical anguish, everything appears pretty idyllic at the Farrar home.
“It wasn”t always this way,” Dennis says. “It was painfully frustrating to witness the two people I love most suffering. I went to work, came home took care of Jillian and Nick and then drank myself to sleep. I felt so helpless. I drank heavily for a long time.” He used alcohol to cope with the feeling of powerlessness. “Dennis is a very private man, who shares this part of himself only to reach out to others,” Jillian said.
When Nick can”t get out of bed he reads, sometimes a book a day. He writes and works as an editor for the youth magazine VOICE. He plays guitar, gardens, cooks, collects knives and loves music.
His primary goal for the future is “To help other people physically, emotionally and spiritually to become unified in wellness.” He says because of Lyme he developed a well of compassion. “I had to go through a lot of things that made me draw deep.”
Miranda just received her EMT certification from Santa Rosa Junior College academy. She loves to help people and still volunteers when she can for the Alzheimer”s Day Care. She says it”s hard to find herself when she”s constantly changing physically, emotionally and biologically. She thinks she might be interested in the nursing profession. She worries and wonders if she can obtain employment. “Who”s going to want to hire someone who is chronically ill? I hope someday I can feel good enough to have a life I want to pursue and share with others,” she said. She wrings her hands a little and pets her calico cat. She says the emotion hardest to swallow is the one she feels when people call her lazy. Tears all of a sudden fall freely; she hangs her head.
Both Miranda and Nick say that people see them and think they”re OK because they look fine. Those people don”t see them on their bad days.
Mandy Feder can be reached at mandyfeder@yahoo.com or call directly 263-5636 ext.32.
