When thinking about my very first blog post for Lyme Advise, I felt the need to make sure my mother, the person who never stopped believing in me, loving me or supporting me, had a voice. I wanted to make sure the people I help, the people who become sick, have something to show their caretakers and family. I can’t stress enough how important it is to a Lyme patient’s survival to have an abundance of love and support in their lives and just how crucial it is to their very survival. There is no doubt in my mind, the copious amount of love and support I have received from my mother, my son and my friends, are a very large part of my treatment success and long term wellness.
I have had to stand by and witness many people within the Lyme Community lose forward momentum and the will to fight and survive because they are alone. They don’t have family support. They don’t have friends to interact with on a daily basis. They don’t have a personal community inspiring them and lending a helping hand when they fall down. If you are a friend or family member of someone diagnosed, I beg of you to slow down, listen and help. Share your love and I promise you will receive that love back tenfold.
It’s also my belief that the people who fight for us, who care for us and who never give up on us don’t receive enough thanks. They deserve a voice in this just as much as each Lyme patient. Lyme disease is a family disease. It affects not just the person with the infection but each person in their life. Lyme patients need to remember to say thank you and show gratitude because our caretakers are up against some tough odds to help us. It wears on them as well.
I asked my mom to jot her thoughts down on being a caretaker to a Lyme patient. I wanted the world to see what I see and I wanted her to share a little with you. I wanted to share with you the most important reason I am alive today because the most asked question I receive is “What did you do to get better?” My secret weapon was my mother.
I introduce to you, my mother, Lenka Knapp:
“Nothing in my life had prepared me for falling down the caretaker’s rabbit hole. After taking care of my mother who had breast cancer and then years later my father who had a disabling stroke, I tumbled back down that same hole of being a caretaker to a severely ill chronic Lyme patient, my daughter.
Between working, caring for her illness and medical needs, helping with her son, and learning the jargon of her illness, medications, and treatments, I literally felt like I was running in circles. I wasn’t prepared for a chronic illness but especially one that was, and still is, ignored by doctors, financially crippling, and disbelieved by not only friends but family. It was completely and totally overwhelming.
I had to learn to trust in myself and my daughter, not the doctors; doctors who had no belief in what they considered an imaginary illness or one that could be cured with a short course of doxycycline. I had to learn how to balance a budget within an ever growing financial disaster. I had to harden my heart against friends and family who disbelieved my child was severely ill and who couldn’t understand the monstrous cost of doctor visits, medications, and treatments that seemingly weren’t helping. Some of those friends have come back after realizing that it was their fear or disbelief of an unknown illness rather than my loved one losing touch with reality. It becomes a different kind of friendship – one that is approached with caution. By far though, the hardest part was watching my child deteriorate before my eyes even though I was doing everything I could emotionally, medically, and financially. I was watching my child die.
In the last ten years I have learned what my daughter needs to survive and function as a person with a chronic illness. Some days I am a cheerleader while other days I am the person who handles the mundane tasks that let her save her strength for what she needs to do, but it’s not a one way street. She does things for me that I either can’t do or don’t want to do. Each day we laugh at silly things. We rail at the world and the stupidity of talking heads and then cry over the beauty of the loving and generous nature of the human spirit in the midst of tragedy.
If I have learned nothing else from her illness, it is to take one day at a time, to stop feeling sorry for myself, laugh each and every day, and to ignore the negativity from disbelievers. I have learned to live a different lifestyle and appreciate what we have. I’ve learned to see who our friends are and which family members are there to support us in any way they can; it has separated the wheat from the chaff. I have learned to embrace our new life and to see the goodness and beauty in each moment, and I have learned to live each and every day to the fullest, to take the smallest of blessings as a wondrous thing, and to celebrate each and every success as groundbreaking. But most of all, I celebrate that my daughter is alive and can fight another day and that we have learned to survive through it all.”