By Crys Baysa
Lyme disease is full of lessons to cherish. I know this may seem contradictory, because in many ways, we feel held back in life, and we see all the potential things we could do if only we weren't sick.
It's easy to make a list: "I could have gone to college," "people would take me seriously," "I could contribute better to my family or the community." The list goes on and on. But at the same time, we have also gained things that others haven't. Much of this isn't physical gain, it's character gain.
1. Lyme Disease is a Time to Learn
Let me ask you a question. What was your life like before Lyme disease? Of course for some of us, we were sick all our lives. I know what your probably going to say: "I could do this and that," "I could hold a job," "I could run a mile," "I could play sports."
It's easy to make a list of the physical things we were able to do before Lyme. It's also easy list the things we could do with our friends before we had such limitations.
Now let me ask you something else. What was your character like before? How much did you know about illness? How did you consider people who had illnesses?
I'm not saying we we're bad people before. By all means, you were probably a compassionate person. But what I'm saying is more along these lines:
Say you're reading about lime-lemonade. You've gotten books about it, you've studied it. You've read recipes on how to make it. You've read descriptions about it from people who have tasted it until it's almost like you can taste it yourself. But you've never had it before.
Fast forward a few weeks. Now is your first ever opportunity to taste it. And once you have, you're like, "Huh this is different than I thought."
That's not saying the descriptions are inaccurate. That's not saying that you didn't have a glimpse of understanding. You probably had heard how good it tasted. When you tasted it, it was every bit as good and every bit the way they described it.
But now you have a personal experience that brings much more understanding than you ever had before. And you realize that you never really understood the lime-lemonade drink before now.
That's what it's like to have a chronic illness. You can read about it all you want but nothing beats personal experience. And once you have it, you have not only a greater understanding than before, but develop a greater compassion.
2. Times of Trial Develop Your Character
After you get a chronic illness, your view of the world changes. It's these views that we need to teach each other and cherish. Let's face it, not everybody is going to have a controversial disease like Lyme disease. And so, it's our duty to educate the world, even if they will never understand entirely. We can still give them a glimpse.
That's what the people who had tasted the lime-lemonade did. They wanted the world to understand, so they tried to educate people.
But it's more than that. When we develop a true understanding, we see that the world is not black and white, but grey. We're not as quick to make assumptions. We see that most things are not cut and dry.
Going through times of trial forces us to see what's wrong in the world. Often times, it's things that are wrong with society, such as the character of society.
For example, when we go through Lyme disease, we see that many people judge by what they see. It's a seeing is believing mentality. They expect to see you with a cane or a wheelchair before they believe you're disabled. Even if your tests show that you are positive for Lyme, if you don't fit what they imagine, they won't believe you.
It's amazing how much you learn about the world when you go through trials. We need to cherish these lessons. Lyme teaches us how not to be. It teaches us not to judge a person based on our own experiences.
Because, if we don't learn these lessons, then we're no better than the people who judge us by how we look.
3. Lessons Are Not Always About Character
The lessons we learn are not always related to character development. Sometimes it's for information. We're forced to learn how the body works and how the health system works. I bet we know more about healing than some people who are healthy.
I know most of us had no intention of going into the medical field. So what is the point for learning all these things? That's assuming we're going through this so that we can develop knowledge.
Well the first answer is in line with the lime-lemonade example: nothing beats personal experience when it comes to gaining knowledge. They say knowledge is power. I disagree. Knowledge coupled with self-discipline is power. That's because you can have all the information in the world, but if you don't have the self discipline to see it through, then it's useless to you.
Also, self discipline comes through experience. Knowledge isn't really knowledge without experience. It's just theory. Until it is put in practice, and until one has the self discipline to use it, it's still theory, even if it's true.
But why do we need this? Maybe it's not necessarily for our benefit. Maybe there's someone in the future that needs the knowledge we are gaining now. It could be that by getting, fighting, and treating this disease, we are gaining the knowledge to help someone else with Lyme or another chronic illness. Knowledge is not always just about us.
It could also be that the knowledge will come in handy and useful for us someday in the future. Maybe we will want a career in the medical field. Then we'll have had the experience of being on the other side. Or, maybe, someday we might get sick again (after we're healed, of course). Then we'll have the knowledge of how to get better faster.
These are just possibilities that are very valid, but none the less possibilities.
4. Let's Take Advantage of this Opportunity
This is probably not the situation we wanted. This is probably not the way we intended to educate ourselves about the world. But this is the situation we are in.
I'll admit, it's a difficult trial. But this doesn't mean that this can't be every bit of an opportunity. We may still want the other opportunities, and that's fine, but we also now have a view of the world that others don't have. We need to keep it, and to cherish it. It may be, that this will be helpful for us in the future someday.
Crys Baysa is chronically ill blogger who has learned a lot of practical knowledge and alternative perspectives due to her chronic illness. These lessons, though hard and painful, have gained her insight and knowledge into the world of being ill.
"I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back." - Maya Angelou
Guest Post: Living, Loving, and Lamenting with Lyme: An open letter to the nasty nymph who picked me
By Lindsay Penkower
Dear Nasty Little Nymph:
Don't let the title of this article fool you. Things have been downright sucky since you picked me.
I bet it was in my early 20's during my obsessive hiking phase, where, with no kids and no real responsibilities, I spent the majority of my weekends trudging through your neck of the woods without a care in the real world. I’ll chalk that one up to home court advantage.
Or perhaps you launched a sneak attack during one of those long treks down to the beach where I was too distracted by kids (and my role as a professional Sherpa) to remember to put on long pants.
Or maybe, just maybe you stole a bit of my blood and ultimately a great deal of my energy, during one of those "glorious" Sunday morning nature walks I like to take with my family—you know the ones that usually end with me pushing a 75 pound stroller up a steep hill while trying to dodge fruit snacks flying out the sides, as well as my husband's disdainful "I-told-you-so" looks.
Whenever, wherever you decided to infect me, your bite would change the course of my entire life and shape me into the person I am today. And even though you can't hear, speak or read for that matter, I feel like I needed to confront you and tell you exactly how I feel. Here is my real, raw, honest and sometimes downright depressing letter to you:
In some ways, you are a thief of epic proportions. You have stolen the life I once knew and loved—one where I was happy, healthy and hopeful for the future. I spent days crying in frustration as I was forced to merely listen to the beautiful noise of my three kids laughing and playing downstairs while I laid sick and helpless in bed. I would stare aimlessly out the window aching to be the active, present, and vivacious mother my kids so desperately needed and deserved. But instead, I was alone. And sick. And scared. And waiting for answers that I felt would never come. All because you chose me. And it's not just me you hurt you nasty little Nymph, but my kids too. In some ways, they have felt the sting from your bite even more deeply than I. They miss their old Mom. The one who played excessive rounds of hide-and-go-seek and always managed to fit in the tiniest places; the one who at bedtime could crack their door open at just the right angle to make sure that the "bad guys" don’t get in; the one who knows just what to say when one breaks down in tears after discovering that flowers (and people) don’t live forever. My daughter asked me the other day, "Mom why can't you volunteer in my classroom like the other Moms?" Now, let’s assume that a nasty little bug like you even has feelings—doesn't that break your heart? I was supposed to be my kids eyes and ears, guiding them through this crazy thing we call life. But instead, I'm sick. Because you chose me.
Despite all of the things I've missed out on because of your seemingly innocent choice—the birthday celebrations, class parties, soccer games, showers, weddings, and bedtime stories, I will never forgive you for taking away my precious time with my newborn son. There should've been a lot of firsts—first time making eye contact, first smile, first laugh and first time rolling over. There should've been many lazy Sundays where we sat and watched his siblings play while he nestled deep into my chest and I ended up nodding off to the rhythmic movement of his breathing. And finally, there should've been at least one early morning stare down, where I would place him on my lap and his Dad and I would examine and admire every inch of his face and make determinations as to who he most resembled. And of course, most often, it would be me.
But there were none of those things. Instead, I spent my time in multiple doctor's offices across the country, where I had to endure painful and sometimes useless treatments, the worst of which was a prescription for steroids. At the tender age of four weeks, I could no longer feed my son from my body. I felt useless, hopeless and resentful. All because a little heartless, callous and wretched little nymph like you, chose me. Oh and let’s not forget the myriad of painful and bizarre symptoms which started with numbness, tingling and gradually lead to facial paralysis and then the inability to speak (which subsequently landed me in the ER). And the most life-altering, horrible and painful complication that most likely arose from your nasty little bite--my profound hearing loss—that would forever change my ability to communicate with my friends, family members and kids. That was the loss that robbed me of a life I once knew and loved - full of sound, music and familiar voices. Now as I sit here recovering from what I hope is my one and only cochlear implant surgery, where the pain and fatigue feels too much to bear, I can't help but wonder why you chose me. Someone that had so much to live for, so many others to care for.
But, after forsaking your name and your entire existence, I have one more thing to say to you. Of all the things you have taken from me, including my physical strength, ability to mother and hear the sweet sound of my daughter’s voice, your choice has inadvertently given me the greatest gift I will ever receive. You have actually given me strength that goes way beyond my physical being. You have equipped me with the greatest problem-solving skills and now my goals, desires, aspirations for myself and my family are higher than I ever thought possible. You have given me perspective—I no longer worry about trivial things like my underwear being neatly folded in my drawer or whether my kids’ socks are on inside out before they leave for school. You have bestowed upon me a higher calling in life that extends well beyond caring for my immediate family and that calling is to constantly fight for my health and happiness and help others do the same. I laugh more, worry less. And when I’m feeling alive and healthy, which fortunately is happening more often these days, I embrace it with a fervor and appreciation unlike anything I have ever experienced. And finally, little Nymph, you have given me a heck of a lot of faith in my body and in humanity in general. The kind of faith that can carry me through the sick and difficult days and instill me with the hope that one day I will beat the Lyme and co-infections that have taken so much from me.
Oh, and one more thing. Because you chose me, I have become the mother that I always wanted to be. I may not go to every single class party, soccer game or dance recital, but now I’m a living example of what I try to teach my children on a daily basis - fight for what you want in life, but learn to accept those things you can’t change and embrace and celebrate the unique and beautiful person you are.
So thank you for choosing me. The one who went through hell, but came back a stronger, wiser and better version of herself.
Lindsay is a recovering lawyer and teacher turned writer, blogger, and advocate for healthy living. She lives in Danville, California with her supportive husband and 3 energetic kids.
Photo Credit: BrittRene Photography
"What I like most about change is that it can be a synonym for 'hope.' If you are taking a risk, what you are really saying is, 'I believe in tomorrow, and I will be a part of it.'" - Linda Ellerbee
Dr. Elena Frid is a board certified Neurologist, who treats vector borne illness and autoimmunity in New York, New York. If you have Lyme you have probably heard of her, because she is a strong Lyme advocate, spreading information to various publications and online. On her website it says "Through social media, medical publications, and community "call to action" speaking engagements, Dr. Elena Frid has committed her time to bring awareness to medical colleagues, patients and families across the united States." This article was originally published in Dr. Frid's Newsletter and she has given me permission to publish it here:
Interpreting Lyme Test - Not So Easy
I have been writing to you about my involvement with Lyme disease and other tick borne illnesses for over six months. Through the letters one can see the vast involvement and damage these disorders can cause and can present in many different ways often mimicking other conditions. In my practice, I primarily see patients who have been undiagnosed for months or even years, often not receiving any treatment or not being treated appropriately.
Part of the frustration in the Lyme community is the fact that there is no one good test that is accurate. The test that we have now is up to 50-70% inaccurate in some instances. In turn, if you test negative for Lyme disease on regular blood work--it doesn't mean you don’t have Lyme. In fact, recently the state of Maryland signed a bill into law that requires health care providers warn patients in writing that Lyme disease testing can be problematic and standard laboratory tests often result in false negative and false positive results.
So what do we do? Well, my suggestion is educating yourself which is the reason for this newsletter.
When a Lyme test is ordered through a regular lab, it goes through a two tier approach: ELISA and Western Blot - WB (3 IgM Antibodies and 10 IgG Antibodies) screening test. When the ELISA test comes back positive, only then a Western Blot test will be run, which tests for specific antibodies for Lyme disease. If you tested for ELISA and 2 out of 3 IgM Antibodies came back positive on WB, you are positive for Lyme, or positive for ELISA AND 5 out of 10 IgG Antibodies positive on WB=you have Lyme.
The issue: a patient may falsely test negative for ELISA and so the bands will never be run/reported, or patients may test positive for a number of bands but not enough to meet the CDC/IDSA guidelines delineated above.
Another important point is that not all WB IgM and IgG bands are created equal. If you speak to Lyme Literate Doctors (LLMD) they will tell you that some bands are more or less specific for Lyme disease. Therefore, many LLMDs look at quality of the bands not quantity in conjunction with assessing the clinical picture including physical findings. Bands that are considered to be Lyme specific according to the International Lyme And Associated Diseases Society=ILADS guidelines: 18, 23, 30, 31, 34, 39, 93.
Please note that some LLMDs also advocate the use of specialty laboratories to test for Lyme and associate diseases which many report is a more accurate way of looking for serologic evidence of exposure to tick borne illnesses.
Take away points:
Thank you Dr. Frid for sharing this important information. Education is thebest line of defense. She has asked that if you have a specific topic you would like to hear from her about to please leave a comment and she may write an article to address it. Visit Dr. Frid's website here. You can also follow her on Facebook, Twitter, Instagram, and YouTube.
"Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow.'" - Mary Anne Radmacher
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.