I got punched in the gut. Not literally but it felt like it (except that my sweet friend would never do that.) She posted a note on Facebook about my journey with Lyme and wrote about how my story helped with her own health after she found a tick and a rash developed. The “note” was entitled, “Don’t Waste Your Story.”
Honestly, sometimes I think this blog is a bit selfish. It helps me sort out my thoughts. I have a million ideas in my head that are usually happening all at once, so sometimes I need to get it out. It’s cathartic. Writing is a big part of who I am. I have kept a journal since I was old enough to write and started writing songs and stories when I was six. I don’t always think about my writing in practical terms – of someone’s life actually being affected by something that I was led to write about. I’m thankful that people are talking about this illness, taking precautions and learning about prevention. I hope that continues.
That title did it – the gut punch I mean. An epiphany. It made me think about how short our stories really are and how much it matters to tell each chapter, each word so we can all learn from each other. It made me want to eat life up to the full before it’s over. I grew up with four brothers. I have three now. It’s been five years this month since Ty’s accident and yet when people ask me how many siblings I have, I still don’t know how to answer that question. I always say four. A few times I stuttered profusely and ended up saying something that was probably indecipherable because I have no idea what the “acceptable” answer is. Ty lived. He had a wife and a son. He was young, smart and creative – probably a genius. He was vivacious. He gave me his old guitar and taught me a few chords and I have played ever since. He wore his hair long for years. He was an extremely gifted architect. He loved music and motorcycles. He was kind and sweet. But he is gone. His story is over, right? What did he leave on this earth? The ones who loved and lived with him – we have our memories but after we die, what will become of those memories? How do we leave a legacy? How do we keep the stories moving forward?
I don’t really have all the answers to these questions I’m throwing out here but I do know that life is a breath and we are only here for a short time. I don’t want to waste my story. And I don’t want to waste the stories of those who have left this earth too soon, too young. I think we need to tell their stories, too.
So, in keeping with the vein of not letting memories die with us – I feel the need to tell you about someone else who also died too young. I met him in college over ten years ago now. His name was Brian. He was from Michigan and loved the Lions. He was smart and giving and happy. There was a brilliant spark about him and everyone saw it. U2 was his favorite band. He loved Christmas – it was a huge deal to him. He also loved the snow. He loved playing guitar and he was in a band. He loved George W. Bush. He did a mean Neil Diamond impersonation. He loved his family. He was a literature major like myself. He told me that Catcher in the Rye was his favorite book. He helped me with my homework and would act out scenes in literature to make me laugh. He liked to play darts. He was riotously funny, like – pee your pants after every other thing he said kind of funny. He LOVED life and he squeezed everything he could out of it. We laughed a lot together and he made me see the world differently. His life changed so many lives and I don’t want people to forget him. No one had the chance to say goodbye. And that was one of the most terrible parts of his passing for many of us who knew him. He left a big gaping vacancy in this world.
“What I was really hanging around for, I was trying to feel some kind of good-by. I mean I’ve left schools and places I didn’t even know I was leaving them. I hate that. I don’t care if it’s a sad good-by or a bad good-by, but when I leave a place I like to know I’m leaving it. If you don’t, you feel even worse.” –Holden Caulfield Catcher in the Rye
Sometimes I fear that Ty and Brian will get lost and forgotten by us – the living. We forget so easily. I want to help people remember. I know they are with my heavenly Father – safe and sound. They are at peace from this crazy world. But they were here. They lived. They loved. They left their mark on us and on the world. We need to tell their stories as well as our own. Memories can fill up the vacancies if we tell others. Don’t waste even one story.
“Maybe nothing is more important than we keep track, you and I, of these stories of who we are and where we have come from and the people we have met along the way because it is precisely through these stories in all their particularity, as I have long believed and often said, that God makes himself known to each of us most powerfully and personally. If this is true, it means that to lose track of our stories is to be profoundly impoverished not only humanly but also spiritually.” -Fredrick Buechner
“Life is not an emergency. Life is a gift. A pail with a pinhole loses as much water as a pail pushed over. A whole life can be wasted in minutes wasted, small moments missed.” ~Ann Voskamp
I guess it’s this disease that’s causing my current sentimental state. The disease attacks my body at random which causes me to be bed ridden on some days and other days I have more energy and I do as much as I possibly can. I feel free – even it’s only for a few hours or an afternoon, I take what I can get and I run with it. Even if that means doing something a little “crazy” or different from the routine.
When was the last time you did something totally spontaneous? The last time you left your home to do something completely spur of the moment? Have you made any impromptu memories lately?
In those moments I feel the need to make up for the time that was lost. The countless hours that were spent sleeping, resting and taking pills. Time taken from me. So, lately I have made a lot of impromptu memories with my girls. I know part of it may be inspired by a guilty conscience – remembering often of the many things I have been forced to stop doing on the days and weeks where I am physically too weak to do the fun things that we used to do together daily. Life has changed quite a bit for them and I really don’t like that. Maybe I’m trying too hard to create the spontaneity but maybe that’s okay because they know that I just love to be with them whether that is enjoying God’s creation in our pajamas during a late night excursion in the country to moon watch. . .
Or squeezing in a girls only tea party before daddy gets home from work…
A couple of nights ago while eating dinner, I asked the girls their favorite part of the day. Big C chattered about lunch time with friends and somehow the subject changed fast, without a breath – as kids conversations tend to do. They started talking about heaven and everything they were looking forward to. The list was something like this: no bugs, no pain, no allergies, eating all the candy they wanted and not getting cavities and with a blink of their eyes they could change what they were wearing. (Only a girl could think of that!) But little C quickly said, “But I don’t like blinking. I miss too much when I blink. Maybe we won’t even have to blink in heaven so we won’t miss anything.” This was said complete with a wide-eyed look at the end to emphasize the “no blinking.”
After laughing quite a bit, I realized that so often I do not see life this way – as a beautiful picture that might disappear if I blink. I’m thankful for children who remind me of how important the little things are and who help me remember to always make room for the impromptu moments in life.
“I want to see beauty. In the ugly, in the sink, in the suffering, in the daily, in all the days before I die, the moments before I sleep.” ~Ann Voskamp
Tonight, I am overwhelmed by God’s grace. The message tonight at church was about healing. Sometimes we think we aren’t praying big enough prayers or that we don’t have enough faith when God doesn’t heal us or provide the miracle we are asking of Him. I know in my heart that isn’t true, but sometimes it is human nature to let negative thought creep over us. God’s plans are bigger than we can ever imagine. Why God heals some and not others is a really hard concept to grasp. It’s been hard for me to understand while dealing non-stop with a painful illness that doesn’t have a cure. I know we live in a fallen world and our bodies will never be fully whole until we are with Him face to face. But I have wrestled with God about why healing comes for some but not others. After tonight, I am no longer wrestling.
I have read the passage below a thousand times, even since going through this disease, but I feel like Jesus personally read it to me tonight. The full weight of the scripture sunk into my spirit. The words were permanently etched onto my heart.
The timing of this message given just a day after my last post about my physical pain is more than coincidental. As my pastor began his message tonight I almost said out loud, “Wow. Okay, God. I’m listening.” I was in tears throughout most of the message. Besides a couple of times in my life, it was the loudest and clearest God has ever spoken to me. I am so humbled and full of peace. I am thankful for a pastor who listens to God’s voice and is intensely committed to Him. I know this message on physical, as well as spiritual/emotional healing spoke to many others tonight, but I definitely know beyond a shadow of a doubt that God wanted me to hear these words tonight.
The apostle Paul writes:
“…I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, My grace is enough; it’s all you need. My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”
2 Corinthians 12:9 (The Message)
Like Paul, I too have been on my knees – praying desperately for a miracle… not just for me, but also for friends who are struggling with pain, disease and hard situations. It’s okay to keep praying for that. And I will continue to, but I am thankful that he reminded me in such a loving way that if healing never comes, HIS power is made perfect in my weakness. The weaker I get, the stronger HE becomes. His grace is ENOUGH!!!!
Use me. Use this disease and any brokenness in my life for your glory. I am undone.
Since it is Lyme Disease Awareness month, I decided to write about this disease that has taken over my body and my life over the past few years. **Disclaimer: I’m going to be very transparent and brutally honest.**
Doctors don’t tell someone with cancer, “You are just depressed.” or “No more testing for your symptom of the week.” Or my personal favorite, “Just get more sleep.”I would hope that cancer patients don’t get told, “Well, you look healthy so I am sure you are fine.” Or “It can’t be that bad, ’cause you look great.” Who would say that to someone suffering?! No one. I have heard that not just once, but more times than I care to remember. I don’t have Cancer, but I have Late Stage Lyme Disease and I believe it is time for the medical community to take it just as seriously as Cancer. Lyme Disease is devastating and it kills.
The diagnostic tests for Lyme are terrible and extremely unreliable to say the least. Even though it is the most common infectious disease, there is currently only a handful of labs that offer a reliable test. (IgeneX is the best from what I have researched.) It is expensive, but to Lyme sufferers it is totally worth it to have lab paperwork that clearly shows that Lyme is present and active in the body.
Borrelia Burgdorferi is what causes my pain, immobilizing fatigue, tremors and neurological symptoms. It may have a funny name, but it is unbelievably damaging to the body even though my face may not reveal the pain, my make-up may help to conceal the dark blue shadows hanging under my eyes and lipstick adds color to my normally ashen face. In other words, most days I don’t really look sick. I have read of Lyme patients that have put up with it for 15-20 years or longer and they are still suffering from this torturous disease. Lyme disease is seriously misunderstood, but it shouldn’t be. There has been opportunity for the world to learn about it, but instead, doctors have turned a blind eye. Lyme awareness is slim to none in most states. Some doctors still don’t believe that Chronic Lyme Disease exists – they don’t even acknowledge it! If you would like more information on the political issues surrounding CLD, the movie “Under Our Skin” is a great documentary, that not only gives personal accounts of the illness, but explains in detail the controversy surrounding this mysterious disease.
From my perspective, much of the confusion surrounding this growing epidemic lies in the fact that there are no definitive answers and in some cases, there isn’t a clear end. Most of the questions I get pertain to when my treatment will be over or when I will I start getting better. Or as my girls ask, “When are you going to be yourself again?” I think that means, when are our lives going to get back to normal? It’s a hard question for me to answer. Actually, I can’t answer it. I have no idea. Chronic Lyme is a very complex, confusing and terribly frustrating disease. Even after successful treatment, there is no guarantee that it will stay that way.
The bacterium has a mind of its own. It’s a shape shifter. When the bacteria is in the spiral shape (spirochete), it can drill into organs and joints or go in and out of the brain causing devastating effects all over the body. But when treatment starts it goes into a cyst or even a granule form where it creates a bio-film around itself that protects it during treatment. Then it hides and survives in the lymph nodes and joints where it will lie dormant until treatment is done. Eventually – even years later, it can start reeking havoc on the body once again. It damages the immune system so severely that the immune system is completely compromised. A Lyme body is much more susceptible to toxins and viruses than a healthy body because of the compromised immune system, which may explain why sufferers have 50+ symptoms.
If, by chance, you beat the odds and are lucky enough to receive an accurate diagnosis, find a doctor that will treat you, have the money for the treatment (insurance usually won’t cover long-term antibiotics and definitely not alternative methods), the treatment works and there is successful eradication of the organism – even then there could be longterm, irreversible damage. It is truly a maddening illness. Sadly, it is not surprising the number of suicide related deaths among CLD patients. The diagnosis feels like a lifetime sentence.
I don’t think the general public realizes how serious tick-borne illness is and maybe, most importantly, how easy it is to contract. Fifty percent of ticks have some form of disease bearing bacteria in them and they are hungry. It only takes one attached tick – even if it has only been attached for a short time, to transmit bacteria. There is about a 1-2 week window to discover it or the bite and get anti-biotic treatment. Put it this way, if you thought you had an insect bite that was hardly bothersome or noticeable, would you go to the doctor for that? Nope! Neither did I. Many people don’t get the severe symptoms until it is too late to do the quick antibiotic treatment. It is a common misperception that the tick will be visible, will cause pain or will instantly cause a big red rash and flu-like symptoms. Sometimes it does happen that way, but not always. That is why prevention is of the upmost importance. If that 1-2 week window of opportunity passes, welcome to my world. It is incredibly hard to get rid of this bacteria and the symptoms only get worse over time.
During the height of tick season, ticks are in the “nymph” stage and can look smaller than a poppy-seed. In other words, they are very easy to miss. Many Lyme sufferers never saw a tick and don’t even remember being bitten. I didn’t. Nor did I have the infamous “bullseye rash.” I have never been a fear-monger and I’m definitely not trying to scare anyone, but I think I would be doing a horrible disservice to my friends and family if I didn’t let everyone know how to prevent tick-borne diseases.
Go to this link and it will give you clear instructions on how to keep from getting bit from a tick and what to do in case you find one attached. Click Here ——> Prevention
I admit that I really didn’t want to write a detailed post about CLD. My husband wanted me to. I’m actually getting sick and tired of talking about, thinking about and researching Lyme. I am writing this at 3am from a place of deep physical pain and fatigue. A place in which I have to be somewhat absent in my daughters lives because of this ridiculous illness. A place where I can’t give my husband one hundred percent of myself. A place where I don’t ever know from one day to the next just how bad my symptoms will be and what I will and won’t be able to do in a given day. A place from when I am asked how I am doing, I have learned to just smile and say I’m getting better because it’s easier than explaining all of this.
I am so weary of having a great day and being physically able to do more than one activity to just end up paying for it the next day and barely being able to lift my head off the pillow. I hate that my “normal” is going to sleep in severe pain and waking up in severe pain. Many nights I don’t sleep more than a few hours due to the discomfort. Often my joints feel like they are on fire. My muscles continually ache and are so stiff I can’t stretch or move very well. In the mornings my body feels so heavy and my feet too sore to take one step and I fall back into bed hoping that my family will get by without me a few more minutes. My left eye occasionally gets swollen, so my eye stays partially closed for periods of time. I have constant muscle spasms, headaches, light and sound sensitivity, heart palpitations, trembling/tingling/numb hands and feet, memory problems and slow thought processes. It is extremely difficult for me to do simple, everyday things like going to the grocery store where decision-making is almost impossible. I try not to go more than once a week because it is just too much. I feel like I have been taken out of life for the time being. My IV treatments alone total too many hours and moments of living that I missed, not to mention the years that have been hindered from participating in my own life.
My daughter had her first “real” elementary school field trip last week and I was going to go with her. I even signed up weeks in advance to go as a parent volunteer because I was determined that this illness wasn’t going to keep me from the important things in my life. But as the day got closer, I realized I had spoken too soon. There was no way I would be able to be there. Thankfully, Ryan was able to go in my place. He and Chloe had a great day together exploring nature and finding tadpoles and lizards. I am thankful that he was able to go. I am happy for that. But I am not happy that this disease continues to steal moments like that away from me. Like many of my friends and family members, I am also asking, “When will it end?”“Uninvited Company” By DeAnne LeBlanc
When the world sleeps
I do not
There is a heaviness in my bones
Movement is a loathsome task
I have a constant itch – under my cracked skin…
But I can never scratch it
The ache the ache
Throughout every muscle and joint
My brain – a balloon of fog and mud
Floating untethered to my neck
Thoughts come slowly – if at all
My mind continually bouncing bouncing
Like an aimlessly thrown rubber ball
And the forgetting – oh, the forgetting –
Forgetting what I just saw
I yearn and beg for the morning
A morning in which I will awake to being me
No longer greeted by misery
Because he is not welcome here
He has been the most dreadful company