If there’s one thing that I learned throughout my sister’s battle with Chronic Lyme Disease, it’s that giving up is never an option. While it’s the most important lesson, it sometimes seems impossible.
Whether you are the person with the illness, the main caregiver, a friend, or a supporter, it sometimes seems much easier to let go and give in, than to push through one more day. The truth is, though, it’s that pushing through that gives both the patient and the caregiver the will and the reason to keep moving. As a fifteen-year-old girl, my sister is expected to live the life of a typical teen, the kind of life her peers are living. She’s expected to attend 7-8 hours of school five days a week, have the energy to do 2-3 hours of homework each night, and somewhere, fit in some time to socialize and, dare I say it, even have some fun.
Being chronically ill, though, has made her hopes and expectations change. When she wakes up each morning, her hope is that she can make it through an entire day of school, or at least make it through her core classes. When she gets home, she hopes that a nap, a heating pad, and some of her medications will help give her the energy she needs to attempt to tackle her homework, or at least some of it. On the weekends, socializing comes second to regaining her energy and resting from her tiring week. Rather than being able to have time to play with friends, attend school dances, exercise, or do other things that she enjoyed prior to getting sick, she simply does what she has to in order to get by.
That’s where my family and I come in as her chronic caretakers. I have learned over this past year and seven months, that this does not just mean making her dinner, massaging her sore muscles, or helping her prepare her medications. It is also up to us (particularly me, because I take pride in bringing the “fun” back into her life), to make sure that she’s not giving up the things she loves in order to make it through the day, the week, or the month. So, I have made it my mission to make sure that she still gets to smile, and can see that although it is sometimes a cloudy view, there is more to her life than her disease. None of this is to say that my sister needs constant care and reassurance and support. This could not be further from the truth. While I would like to think I would be as mentally strong as she is if I were in her shoes, I’m truly not sure that’s the case. She has shown such strength and persistence during her ordeal, that it blows us all away. But, sometimes, we all need a shoulder to lean on, or a buddy to watch chick flicks with.
While it may seem unhealthy, Netflix has become our best friend. Unfortunately, lack of energy means lack of desire to do much physical activity. While it may seem counterproductive, though, I noticed something. When we come across a show or a movie that we fall in love with, it changes her mood and her outlook. If she has a chance to watch an episode of a favorite show, it inspires her, and leaves her in a better mood. For a little bit, she is able to stop thinking about her pain and her inability to do much else, and concentrate on the characters and their storyline. Afterwards, she is excited to talk about them, anticipates the next episode, and we are able to bond over something totally unrelated and unaffected by the Lyme. It’s a similar situation when we find a book we both love. While I don’t recommend becoming addicted to girly television dramas as a cure for chronic illness, the truth is, sometimes her energy and pain levels don’t allow for much more than that. But during these times, rather than sitting and letting the misery take over, the art of cinema comes to the rescue, and reminds her that life can be enjoyable.
Some days, she feels good and energized, and it is those days that we take advantage of. We walk, do crafts, or find some other kind of physical activity to do. Regardless of how little she can do, we still do it. But, those days do not come often, typically only once or twice a week. And sometimes, on the days when she is bound to the recliner, we need a reminder that the good days will come again. Whether it’s a show, a book, or just talking, there is always something to remind us that life will go on. Someday, the bad days won’t come often, only once or twice a week. But till then, it’s up to us to decide if we spend those bad days in tears, or with a smile on our face, knowing better days are to come.