Living With Lyme Disease

It was July in Texas. The air was thick and hot, the sun hung lazily in the sky, bright and beating down rays of scolding hot light, showing no mercy. Vern Hollingsworth was tending to his tomato garden, listening to his grandchildren laugh and play in the distance. He could hear their little feet padding through the tall grass that grew near the lake; they were playing hide and seek. The tall grass was his granddaughter Holly’s favorite place to hide. Life on the Hollingsworth ranch was safe and peaceful. Vern taught his grandchildren at a young age which plants were poisonous and which animals to avoid. They knew what noises rattlesnakes made when they were mad, they knew how to properly tag cattle, and they knew how to kill and cook a rabbit in less than thirty minutes. His grandchildren were smart and savvy; he was proud of them, and he knew he had nothing to worry about. He smiled to himself as he thought about this, he picked his tomatoes and let the sound of his children playing hide and seek wash over him.

A week later Holly was sick in bed, Vern brought her some tomato soup made from the tomatoes he picked a week ago. He didn’t think anything of her sickness, but little did he know that this flue he thought she had would turn into something bigger, something worse; something that would control her life until well after he had passed away.

***

Holly slowly makes her way into her large, open kitchen. Her husband, Manny, and five year old daughter, Marisol, are standing at the kitchen counter chopping vegetables. Last year, Manny and Holly bought Marisol a kitchen knife kit for kids. Cooking is one of the many things Marisol enjoys doing with her parents. “I’m out of bed,” Holly exclaims excitedly as she walks over to her daughter and gives her a big kiss on the forehead. “These days if I can make it out of bed I take that as a huge win for me.” Holly suffers from Lyme disease. She caught it from a tick when she was six, the day she was playing hide and seek in the tall grass by the lake on her grandpa Vern’s ranch.

Lyme disease is the most common tick-borne illness in North America. It is caused by the bacteria Borrelia burgdorferi. Deer ticks, which feed on the blood of humans and animals, can harbor the bacteria and spread it when feeding. 

Holly and Marisol start chattering away with each other, Marisol is telling Holly about today’s piano lesson as Holly walks over to a brown drawer next to the stove, she calls it her pill drawer. Forty bottles of pills are stacked one on top of the other in this normal, brown drawer. She stands there, still excitedly talking to her daughter, and starts taking one pill from every single bottle.

Holly smiles at her daughter as she swallows forty different pills, and Marisol and Manny don’t even blink. This is a normal day in the Hollingsworth household.

“The pills aren’t even the worst part,” Holly says as she gulps down another handful of blue, orange, and white pills, “I think the worst part is the fatigue, I will go weeks without getting out of bed. I can’t walk around; I can’t even lift my fingers to type on my phone or write emails to friends. It’s like I’m paralyzed.” She takes another hand full of pills, and washes it down with another large gulp of water.

Besides causing severe fatigue, Lyme disease also causes hepatitis, terrible joint pain, numbness in your limbs, meningitis, and Bell’s Palsy. These are all conditions that Holly wakes up to and faces every day. The fatigue is the most painful part of having lyme disease, because it means she has to miss out on a lot of Marisol’s active life.

“Mommy had to miss my birthday party this year because she was so tired, she has to miss a lot of events, but she always lets me sit next to her in bed so I can tell her everything she’s missing out on,” Marisol says as she continues to chop vegetables next to her dad. Holly’s eyes start to glaze over; a sad expression washes across her face as she continues down the line of pills.

“Mommy always tries hard to be there for you, you know how much she loves you, she gives you everything you could ever need” Manny chimes in as he gives his daughter a little nudge. Marisol giggles and agrees with her dad, Holly smiles weakly.

It is true; before even talking to Manny and Holly about Marisol I could tell they wanted to give the entire world to this beautiful child. When you step foot into Marisol’s bedroom you can tell that she already has more life experience than you do. Her walls are decorated with her drawings, Swords that she uses during her Tuesday night sword fighting lessons lean against her bed post, soccer balls and ballet tutus cover every inch of her floor, packages filled with beautiful clothes that her mother ordered online and surprised her with sit torn open on her desk, and dozens of “learn how to speak French” tapes litter the big love seat that sits by her window. Her parents have put her into every single activity under the sun and she loves every second of it. She is intelligent, outspoken, and she knows exactly what is wrong with her mother. They have never tried to sugar coat Holly’s condition. Marisol could tell you more about Lyme disease than google could.  

“Yeah, she is definitely a spoiled child,” Holly laughs, “but she is our miracle baby. She gave us hope when we didn’t have anything left. She gave me life and happiness, and for that, she deserves the world.”

Before Marisol was born, Manny and Holly had tried countless times to have a child. They all led to miscarriages. Holly has had a total of 12 miscarriages, all happening when she was three or four months pregnant. The Lyme disease had made it nearly impossible for her body to nurture and conceive a child. Somehow, Marisol fought through the lyme disease and made it out of her mother’s body unharmed, they thank her every day for making it out alive.

“I don’t want you to feel bad for me,” Holly explains. “I have everything I could ever want in life; I have a supportive husband and a beautiful child, which is more than a lot of people in my condition can say.”

Like anyone with a life threatening illness, Holly has her ups and downs, her good days and her bad days. Some days she feels strong enough to get out of bed and spend time with her family, but other days are full of suffering and pain.

“We all support each other,” Manny says as he thoughtfully looks from his daughter to his wife. “No matter what life throws at us we will always be here for each other.” Manny and Marisol are there for every doctor’s appointment and physical therapy appointment. Marisol is there to feed Holly oatmeal when her limbs go numb, and Manny is always there to carry her to the bathroom if her joint pains are so bad that she can’t walk there herself. Their lives are tragic and beautiful all at the same time. This is true love. This family is the definitely of love and compassion.

“I love my parents this much!” Yells Marisol as she stretches her arms out as wide as they can go. Manny and Holly laugh, they stare at her with such appreciation, their devotion to each other is electric.

***

“Life is always going to be hard, but I can’t throw myself a pity party and let my pain control my life. My family supports me, and their love is stronger than any pain my body wants to throw at me.” Today has been a good day for Holly and her health. Holly finishes taking all of her pills and grabs Marisol’s right arm. She brings her into a tight embrace and Marisol shouts in protest but the giggles never stop escaping her lips. Holly swings Marisol around and they start fox trotting around the kitchen, stopping only when Holly wants to plant a kiss on Manny’s lips.

“Life is hard and unfair sometimes,” Manny explains as he throws the chopped up vegetables into a big wooden bowl, “but you have to take it for what it is and just go with it. It breaks my heart when Holly is in pain, but when she is happy and alive like she is now, it makes me realize how truly lucky we are to have each other. We’ll never stop fighting for this beautiful life that we live.” Manny stops transporting the vegetables and takes a moment to smile at his dancing wife and child. “I don’t care how much pills or treatment for Holly cost, there isn’t any amount of money in the world that could ever get me to give this up.” At that moment, the laughter and affection for one another is all that I can hear.