Dinner is my favorite time to create. I put on some music, sip a little wine, and let the aromas of the kitchen come to life. But sometimes I don't feel like spending an hour or more in the kitchen and something quick fits much better. So something as simple as a burger can become even better with some time and effort.
One night I felt creative, looking through the kitchen I settled on burgers for dinner for my daughter and I, since my husband was out of town and we wanted to get back to watching junk TV. Usually we try to go easy and quick to clean up when he's gone. However, that night after watching some culinary shows on TV we felt like making burger magic.
The veggie burgers took no time. Then topping them became the fun part. While Sara likes her burgers traditional with just ketchup and mustard, I wanted something with spark.
My husband and I love the “Beyond Meat” veggie burgers. You can find them in the meat section usually by the turkey burgers. They are vegetarian. They have a softer and fuller texture than the frozen brands. And we love that they are juicy and have a bigger flavor than others we have tried.
I love visiting Olive oil and vinegar shops. I always find a huge selection of olive oils and balsamic vinegar to stir my creativity. So for my burger I layered a light goat cheese, fresh sweet pea shoots, and a few pickled beets and then lightly drizzled olive oil and chocolate balsamic vinegar the top.
WOW! It was amazing the taste sensations, creamy, fresh, then a splash of that tangy balsamic to enrich the flavors. SO SO SO good. Who says burgers have to be boring?
Halloween is my favorite time of the year. I love all things Halloween, the decorations, scary movies, and the candy! But unfortunately, as Halloween grows closer, the weather gets cold. And while I know that cold weather doesn't really bring on colds, the crazy weather does bring on migraines and sinus issues.
I've been having a few Lymie issues due to the weather. Headaches are the worst part. Living with aches and pains is common, but for me.. I get optical migraines or aura migraines, which take out my vision, leaving me unable to focus on anything. It's not a fun event when that happens. But when I am keeping an eye on it, it's not too difficult to stop before it gets ugly.
This year we are moving from Seattle to Maryland, so we are packing up the decorations and everything else. I'm exhausted. I know I need to keep packing, but all I want is a nap!
I wonder if procrastination is also a Lymie symptom. I'll look that up… later. ;p
I had a very complicated relationship with family growing up. Guilt was a weapon used for everything from eating your peas to hugging people who made me feel uncomfortable.
I worked hard. Made good choices. And did everything I could to better myself and it paid off. But guilt was still there. It is one of those weapons that lingers over and over in the back of your mind. I felt guilty and unworthy of the life I had been living.
I felt like I shouldn’t spend money on myself or my family because of the shame I felt because others weren’t doing as well.
Every time I bought a new sweater, went on vacation, or any other time that normally you should be excited and happy to share with friends and family. In my head I could hear the nasty comments “Oh yeah, she can buy a new TV but she can’t be bothered with helping out the homeless!”
Even when I was doing something for others I would feel the chill of jealous eyes watching and judging me. “Sure she can do for everyone else, but when it comes to us we aren’t good enough!”
And it wasn't just self talk. I actually had real humans think it was alright to troll me both online and in real life. It was ridiculous. It took me a long time to let go of toxic people out of my life.
After a while I just broke. I wanted to scream “No more! I am sorry you haven’t done anything with your life and now you sit there with your begging hands out looking for attention and breadcrumbs. That isn’t my fault! You want to be angry about YOUR past, go for it. I'm not responsible for your baggage.”
It took me a while before I could say out loud that I am done feeling guilty. It's hard, really hard to face the fact that some people want to see you miserable because they are so childish and awful. But even harder to accept that just because you once loved them, you have to let them go because you deserve to be happy.
I work hard, I give to charity and spend my time working with those charities to help them and my community. I talk to strangers and listen when they speak. I don’t treat other people poorly and in return they are kind back. There’s nothing wrong with that.
If you chose to walk down the wrong path even though everyone else tried to tell you not to go that way, that’s not my fault. Good luck with that.
So good-bye Guilt, you no longer have a room in my house. And I don't miss you!
There have been times that I truly wish could have lingered on a little longer. Moments when I knew this was one of the best moments of my life and I wanted to hold on to them. Sometimes in daydreams I go back in time, trying to feel that specialness again. They sit on the protected shelves in the halls of my memories and from time to time I take them down, dust them off, and cherish them for what they are.
When I was little, perhaps only a couple of years old I have a special memory of splashing around in my tiny pool on the rooftop of our apartment building. The water was cool on my tiny pink toes and the contrast against my hot skin made me feel exhilarated. The freedom of being alive, happy in the comfort of my toddler bubble was appreciated so much that I placed it as one of my favorite memories to be cherished my whole life.
The memory didn’t need to have other complex attachments. Even though in spite of my age, I knew that things would not stay this way forever and I had a need to appreciate the memory. Isn’t it funny how even little children have an understanding of important things?
A few years later I was snuggled close in the big bed with my great-grandmother. The covers were pulled up around us as we sat back on big fluffy pillows. Between us we had a bag full of snack sized 3 Musketeer bars that we shared. We were watching Gallagher, a comedian popular for smashing watermelons on stage and splashing his audience. Truthfully, I didn’t get most of his jokes. But I loved watching it with her and I laughed every time he took a sledge-hammer to a melon. I knew this was a special time with her. When she died many years later, the only thing I wanted was to crawl in bed with her again and pull the covers around us. Now, from time to time, my daughter who is 15 and I will crawl into my bed for that special place and snuggle close to talk about life and share some chocolate.
First dates, first kisses, and first intimate moments all take their place in the halls of my memories. Laughing in the rain as it poured down on our heads as my husband and I danced through the mud to the music only we heard in our head as we fell in love. Hanging on to the moment as tight as we could, not letting anything spoil the memory we were making, that became part of our love story.
More recently I was sitting in a coffee shop overlooking the beach with my daughter. She and I love it there, we sit for hours watching the waves, look for seals, enjoying free wi-fi from the coffee shop. There was a moment that I drift to regularly that takes me to this favorite spot. I was writing on my laptop, reflecting on life and happiness. The sun was shining and it was just one of those incredibly beautiful days. As usual, Lance called for his daily chat. And I remember saying to him that this was possibly one of the happiest days of my life. For a rare time, everyone was happy. I was feeling really good. I was so thankful for the people in my life. I wanted to save that moment forever.
He had such a great way of looking at things. He and I talked about how our lives were actually taking a turn for the best. We were both making efforts to capture the spirit of true happiness in our lives. He was going to ask the girl he loved to be his wife. I was going to make some changes that were long overdue. We talked about a friend of ours that we were both overjoyed to reconnect with. He was going to call him and I had just came home from a visit. We talked about wanting to stay in the glow of this amazing day. It was one of our best talks in one the best places. We laughed and said he needed to come to the beach with me next time he was visiting and we talked about him coming to visit for Thanksgiving. He didn’t make it. He died in an accident just a couple of weeks later.
Amazing days all have to come to an end sometime. We get them and we save them in special places. When we need them, we get to go back to those days and linger in their warmth. I know I’ll have many more moments to add to as time goes by. Hopefully I am included in some of the special moments with others I love too. I know that for those that have passed on, these special times I shared with them make me feel like they are still with me. It’s as if we have this common place that we return to together and we can linger there in this timeless place.
Some choose to fill their memories with sadness or anger. Those feelings make it hard to take comfort in the times that were good. I don’t want to be that sort of person. I don’t want the images in my heart to be of tears or rage. I want to be back in my Gram’s big bed instead of hiding behind locked doors. Or sitting in the perfect coffee shop talking to my best friend, not knowing that it might be the last heart to heart conversation he and I would ever have. We actually get that choice. We have the option to accept this day as one of the best ones of our lives and breathe in this sense of joy or to be so busy and consumed with the negative feelings that we let these moments pass by without saving them for when we might need them.
Not every day is perfect. We have those frustrating days to make us appreciate the ones that are magical and worth putting on a special shelf. We all need bad days to make the good ones feel ever better, don’t you think?
I met a woman recently, who asked me what I blog about and I told her that I primarily write about Food, Travel, and overcoming what holds you back to do what you love. What holds me back is Lyme Disease and more and more I've began to write about my life, living with Lyme Disease.
She smiled and was so excited about this, more than I'd ever heard anyone be excited about me having Lyme. But her excitement wasn't about me having a chronic illness, but it was about the fact that I have chosen to share my Lyme story with my blog readers.
I really thought deeply about what she was saying to me and why.
My new friend is a recovering addict, her addiction was alcohol and at this event that I attended, she shared her story of addiction and her husband shared his story of living with someone with her illness. Addiction is an illness.
Her story was one I'd heard from others, a wife with a beautiful family and successful career who struggled with addiction.
To be completely honest, I didn't want to attend the event. It was a fundraiser for a rehab house and I went in with a negative feeling about addiction and treatment. I was wrong.
My feelings about addicts comes from a long history of being a family member, a friend, a caregiver for addicts and the abuse that often comes from fighting their disease. But I left knowing something more about addiction and relating it more to the fight that I deal with in having my own life illness that I know my family struggles with as well.
The more that I listened to the stories of families who struggled, whose life changed because of their family member's illness, the more I related to how my life and that of my family and friends. Even though there are some stark differences between Lyme and Addiction, both are a lifetime illness that change the way you travel, eat, drink, entertain, and what you do when you are so stressed out that you just don't know which direction to turn.
Becoming addicted to pain killers, alcohol, antidepressants, food, anything to cope isn't as hard as I once imagined. In fact in researching for this article there are lots of studies being done to actually identify statistics between Lyme Disease and Addiction. Lyme disease carries depression, anxiety, and pain along with it like a noose. It is highly likely that may Lymies also become addicted to something in their journey with this disease.
When she said that she loved that I shared a story that was not one that many know, the life of someone who lives with Lyme Disease, I thought more about my blogging and who I hope to reach out to. Yes, my blog is for everyone. But there are those, like myself, with Lyme Disease that often feel so alone, desperate for more information, feeling hopeless that we will eventually die by this disease.
Writing about my symptoms used to be stressful, I felt like the more focus I gave so much energy into feeling bad.
Then I realized one day that when I tell my Lyme story, others come forward with theirs. They tell me about their daughters, husbands, friends, and more. They talk about their struggles, their fears, and they see that they are not alone in the dark.
Dancing with Fireflies is about telling stories, sharing experiences, giving light in the darkness. We all are going through something, by sharing our stories we begin to see the lights out there on the horizon. Other lights just like our own, there we dance, there we come together and make each other strong. Just like fireflies in the night, a beautiful sea of sparkling lights dancing to music that only we hear.
When I close my eyes there is a brief second that I can almost feel you. So I close my eyes often, hoping that if I do it enough there will be a whole minute in the day when I don’t feel this thing that I do now. People walking by might thing I am sleepy and need a moment to rest my eyes, they can’t know that I am not tired but searching.
It’s 3am and I open my eyes and the darkness greets me with silence except for my husband snoring softly, so oblivious to my lack of sleep. I look around the room not even sure what I am looking for in the blackness of night. Again I feel as if I am looking through the veil and hoping to find something that isn’t there, a whisper, a clue.
I see signs in obvious places, pennies on sidewalks, feathers in trees, music where music should be, all hidden messages to where it might be. I am feel as if I am searching for a treasure that won’t be found.
Time keeps moving faster and pushing me towards this date on the calendar that I don’t want to see. I ignore the motivational speakers and nod my head like an idiot in hopes that they won’t notice that I am not listening. I can’t listen if I want to find it! Why the hell is this so damned hard!
Impatient and annoyed, I take it out on my hands as I clench them tight and twist them back and forth as if trying to push out the rage through my skin. The damned silence is taunting me as I engage in telepathic conversations that are one sided because you have abandoned me now. I’ll show you, I’ll be so busy that I don’t have time to think. I’ll play the music so loud that I wouldn’t hear you even if you wanted me to. I won’t be a part of this… I don’t want to keep looking for signs… waiting for whispers… hopeful that you will just give me one… tiny… word.
Damned you for this! Damned you for giving me this distraction from my life. You always wanted to be the center of attention and got so pissy when you weren’t. Now you have my attention and you give me nothing in return. I gave you my friendship, my attention, my love… you were my friend, my safe place, my brother. I would have done anything for you, you just had to say it. But sending me on this ridiculous quest to find all of the pieces that shattered of my heart when you died is bullshit.
But still I close my eyes and let the cool wind blow over my face and let go of the sadness and anger. Peaceful thoughts settle around me and I push myself to be better than I was, a better wife, a better mother, a better me as I think about how you cheered me on. Even though you were here one day, so loud and full of yourself and gone without warning. I will keep looking for all of the tiny pieces of my heart and glue them back in place somehow. All the while I’ll be looking for hope that you aren’t gone forever and one day you will let me know that you loved me as much as I did you, as your friend, your safe place, your sister.
The last few weeks have been extremely stressful and emotional. There has been so many deaths in my circle, both close family and celebrity deaths that struck home. It's been a lot to deal with. My body aches, I have been retreating from physical contact as much as possible. It's been hard.
I know I've been fighting a touch of depression. I’ve done my best to try to rest as much as I can whenever possible, but I can feel the Lyme bacteria beginning to crawl back in control and remind me that stress is the single greatest aggregator of Chronic Lyme. My symptoms will rise up and I will have to pay for not being in full control of my stress levels.
Thankfully I know and understand the role stress plays on my fight and how the aches and difficulties my body is having is because I am fighting to stay afloat both mentally and physically.
Stress is like a sleeping giant,” says Dr. Thoring. “It suppresses the immune system and allows any latent or dormant disease to proliferate.” A stressful life situation, he explains, can wake the sleeping giant. He says many people experience their first LD symptoms following a stressful life change.
My pain levels the last few days have been higher than they have been in months. I’ve had the enjoyment of random tremors jumping through my muscles and lasting for hours at a time, but that’s ok. I can deal with the pain, I can ignore the tremors. I know that I need to get a better grasp on my grief and stress because depression is one of the hardest symptoms to overcome with Lyme. Even the people you believe have the best ability to move through stress and depression have shown, like the amazing Robin Williams, that it can overwhelm.
So today I’ll try to get myself in a better place both mentally and physically. I know I need to add more Vitamin C and get a B12 shot in order to boost my immune system and fight lyme. Also I’ll make sure I am taking my daily Multi-Vitamins. Because of the Lyme I have a weaker immune system and suffer from less energy throughout the day. Lyme disease loves a weak immunity and I will end up getting very sick.
I am so thankful to have such a great support system and I know that I will get through this. But even as I write, my hand just ache and my head is so foggy. I’ll go heat up in the shower and get my circulation moving as I try to clear out my thoughts and keep the madness of Lyme from taking over.
Lyme is a struggle, but it is not who I am. I am stronger than my body thinks I am.
Living with Lyme is a constant balancing act. You try your best to live a “normal” life, but you are also faced with the task of watching every bite that goes into your mouth, a handful of pills to manage the disease, and all the while knowing that you are fighting for your life. When grief comes into your life, it is hard not to think about dying and about those you will leave behind.
The fact is, Lymies, like myself are well aware that we have issues that can kill us. We face our mortality even more when people we love die.
I am guilty of preplanning my death, my tree pod ash container, and thinking a bit too much about the end.
Grief is painful, both mentally and sometimes even physically.
So dear Lyme friends, take care of your bodies. Enjoy as many naps as you can to recharge your energy that you need to keep fighting. Do what it takes, but understand that it isn't a quick process.
I can’t say I even believe in heaven anymore. This magical place where only the good belong. The ones that don’t screw up, go the wrong way, get sucked in by just trying to survive and forget this almost impossible place, they belong in heaven. The rest of who aren’t sure about feathery angels and golden rules, where do we belong? Do we belong in that odd nothing where those who claim they don’t believe in God go? Is heaven actually a state of mind where you mind just blanks out to when you aren’t sure what to think anymore? Do we get a choice to go or can we please stay with those we love for a while longer?
I was always a good girl. I followed the rules and said my prayers before bed just in case before I woke I was snatched out of the world of the living and made to face judgment. Sometimes I still do. But those prayers aren’t for me anymore. At some point prayers are more focused on sick kids and troubles you can’t fix on your own. I never really strayed into the dark side, some inner fear that once you get too far gone you can’t just run back and hide under the covers. I suppose I am technically still a good girl.
It’s been a while that I could actually say that I was on solid ground. It is amazing what someone you love dying can do to make you really question life.
Tell me your secrets and ask me your questions…
I still talk to them, Lance and my Gram, sometimes even out loud when nobody else is around. I don’t expect answers. I just need to hear the sound of the questions and feel them across my tongue.
Lance knew something was up, we talked about things like that. He somehow knew that even though he would fight it, there was going to be a change in our relationship. Maybe it would be me. I have this sick thing, this Lyme curse. Maybe it was going to tragically end my days and everyone would say that it was so sad that I left behind a loving family and a great life. But it was for the best because she was always fighting the sickness and the pain was terrible for her sometimes. Unspoken we knew that something was going to change us. We talked about wills and really needing to grow up and make some plans for just in case. He must have thought about it a little because he had the papers, his directives… just never finished them.
I still ask him why it had to be him. He still answers back with unreasonable answers. As I try to find understanding, the house is too loud. Girls playing the piano and singing, boys running around laughing, a house full of reasons.
But I wouldn't want it any other way.
Running in circles, coming up tails. Heads on a silence apart
I have walked through the stages of grief and coping and somehow come back to the start. Today hurts, tears come, not for him but again for me. I know he isn’t coming back to life, not going to call anymore even though I have kept the phone in my desk drawer with his texts. I know that life has changed for me for the better and I am not who I was before, I am better and stronger. But it still hurts, likely it always will sting a little.
Questions of science, science and progress do not speak as loud as my heart
I am different now. I question life just as much as the afterlife. I feel faith deeper in my core, not for the pathway to heaven but for the stepping-stones to life, tiny chances to live more connected. I have questions and now instead of passing thoughts, I ask them and seek answers. They died. I get that, but I don’t have to die with them. I can’t let days pass shadowed in darkness and tears, I want to live fully. I don’t want to wallow in depression of sadness, I have seen how that drowns a soul.
Ester Hicks said once “A belief is only a thought I keep thinking.” I am thankful for the challenge of my beliefs that I have experienced this year. I started this journey feeling such overwhelming pain and I am coming around to this milestone with overwhelming joy.
Tell me you love me, come back and haunt me…
When I think about grief, the first thing I think is, thank you. You have given me an incredible gift, one I didn’t ask for and didn’t want.
You have haunted my thoughts and pushed me to being stronger than I ever thought possible. You have shown me that I am a beautiful person and as frustrated as I have gotten with having Lyme, I am still not beaten. You have been that voice in the back of my head reminding me to say I am sorry when I am angry, telling me that life is short and I might not get the chance to take it back.
You have made me see how important it is to tell people exactly how you feel, even if it isn’t all that pretty. You made me stand up for myself and demand that if you are going to be in my life you aren’t going to threaten me with guilt or tell me lies. You made me hold strong to our promise to put myself and my family first and let go of pain, no matter where it came from.
You have haunted me, perhaps not in the way I would have thought. Belief in the afterlife or not, the power of our friendship didn’t fade when death came. It made me strong enough to get through it.
Can there be a heaven waiting for us? Perhaps heaven isn’t anywhere, maybe heaven is just knowing that you are part of something connected and truly becoming part of everything.
I won’t know until it is my turn and until then I’ll be living.
A special Thank You to Coldplay for making beautiful music and the song The Scientist. It was one of Lance's favorite songs and it became the theme song to my grief and learning how to move on. – Crysta
I'm not sure if it is because I am a creative person or perhaps growing up religious opens my mind up to the possibilities, but I believe in the Afterlife.
I am a spiritual person. I always have been. I believe in spirits, Angels, lives before this one, and Karma. I have a fondness for the teachings of Wiccans, Jewish Kabbalah, and even a brief understanding of several other religions. I can't say that I fully grasp just one brand of teaching, but find value in most of them.
But the afterlife is a mystery that I still struggle with. It wasn't until my brother passed that I really spent a lot of time considering what happens after death and IF there is an afterlife.
When he died I struggled with the concept of simply saying goodbye to the person he was and letting him dissolve into memories. How is it that people can make such a strong bond in LIFE but once that heart stops beating, the connection is severed? No, that's just not enough.
I know there are times that a loved one is reaches out to comfort us in our time of change. I've seen the little signs that when I am lost, hurt, or sad, I am not going through this alone. Yet accepting these offerings as a positive moment and thanking both our loved ones and ourselves for being able to see and accept these signs for what they are, that's hard.
When Lance died I found pennies everywhere, a wandering feather, and songs on the radio that seemed out of place but very much typical of my relationship with my brother. The ache of his loss has seemed to settle down. Even though I wish very much to be able to sit down with him, face to face and talk more, hug him tight and thank him for the amazing things he has done in my life.
I have come to the understanding that our relationship has just changed. I don't have to feel the deep sense of loss that I did when I can enjoy expanding my views to the concept of change.
Today I sat out on the patio and closed my eyes and listened to the rush of the waves on the shore and the soothing sounds of the wind. I felt my body relax as the sun warmed over my body and I drifted in thoughts to the many things I have had to face lately. A soft pang of missing Lance passed over me but was quickly replaced by the memories of his laughter, his jokes that usually only he found as funny, and songs he used to like. Warm and comforted by good memories I sat out in the sun and enjoyed the idea that maybe the rejection of change is what was hurting me so much.
What happens if you can seek out to use your other senses to accomplish a connection between you and your loved ones who have gone through the change. Using your intuitions, couldn't you connect with that altered spirit is something that many for hundreds of years have tried to explain but few accept as truth?
The theory is interesting and I think it might be worth exploring more. What do you think?
Hi everyone, I just wanted to take a few minutes to talk about Lyme disease and how I am so thankful that Lyme disease research has taken steps out of the dark. I've had long term Lyme disease probably my whole adult life. It wasn't until by chance a woman with terrible muscle control who was almost crippled met my mother who asked how she was told my mother about Lyme Disease.. and a few phone calls later I was at my doctor's office being tested. At last I had an answer to what was wrong with me.
That was 14 years ago. Even my doctor at the time had no ideas on how to treat me, what would be next for someone with my stages, or if it were possible that I passed this down to my 3 children.
Today Lyme has become a real disease with real teams of doctors searching for solutions. Today there are books, articles, websites, and gatherings of people with advanced Lyme disease. No longer must I sort through the chatrooms filled with.. sorry.. some pretty strange people, in order to ask ” is this normal? ”
At one point I was hopeless.. especially after a 2 hour phone call from ” the Lyme Disease Association ” chairperson who basically told me I was infested with a highly advanced race of aliens and I should pay her to be my guide and join her group at 30 dollars a week, so that I might live symptom free.
I know I will never be symptom free. But I am ok with that, I know that I am going to be alright and I am always thankful to meet others creatively coping with long term issues.
A few years ago I found myself dreaming of doing more with my writing. I wanted to be a writer but I couldn't seem to get passed the dreaming phase and on to the actual writing.
Like so many people I was stuck until I accepted that no matter the outcome, I would never know what it was like to be a writer without actually trying. I had to give up being afraid of the challenge of writing, the rejection, and just do it.
I share this in hopes that someone out there will understand that they are not alone in their fear of chasing down their dreams, finding their spark, and doing what makes them happy. Please enjoy Shut Up and Write.
I admit it, I have a hard time believing in myself. Even though I am pretty sure I have some valuable skills, I have this inner fear of actually doing something with those skills.
I know I am a writer. I do it in my sleep! I wake up with a full novel in my head, ponder it for a bit as I move through the morning motions and dismiss it just like I did the morning before. I can write. But…. I don't.
In fact, I am pretty sure that if I could just chain myself to my desk for about a month and not watch TV, get distracted by Facebook, Words with Friends, or Etsy, I could finish a full novel, rewrite it, and have ideas for the next one plotted out.
But I don't… I just know that it's there and don't let it go any further. Why?
I think one of the reasons that I love blogging is because I have the ability to keep my attention on my writing for a limited time and then move on to the next thought or project. I envy those that can focus on the project and see it to completion.
My aunt Toby is an incredible writer. She has this ability to tell a wonderful story and capture the reader into her world. Her books are well written and inspiring. Best of all.. they are published! Yes, she actually has a following of fans who have read her books and can't wait for the next ones to come out. I listen to her stories about writing and the process of publication and part of me is jealous ( in a good way ) of her challenges and progress. I LOVE hearing about the cover art, the rewrites, and the book signings. Even though there is another part of me screaming of how terrifying that must be!
She can write. She is a writer. But more than that… she has put her passion to work and hasn't hidden her talent. She is an inspiration!
So what stops me? What stops any of us from leaving the comforts of the everyday and becoming something different?
As much as my inner author screams “Yes yes yes! Do it! Write and be FREE!” there is almost as much chatter from the fearful side of me that sees change as a horrendous tornado coming in my direction and about to throw everything up in the air knowing I won't be able to catch it all!
I have this conversation regularly actually. What is stopping me from writing a book?
The answer is, I don't actually know. Fear?
Fear of actually completing this project and then turning it over for someone else to read and judge?
What if everyone hates it? How will I deal with the critics?
I know that is part of the process and one of the biggest bone shaking fears I have… what if I am really terrible and I am just standing up there in front of the judges like an oddball American Idol contestant with no clue that I have NO talent at all.
I am just up there singing my little heart out and waiting for them to tell me I am a super star and when I open my heart and let them in they just sit there in horror. Their eyes wide with fright as they struggle to find the right words to try to describe what I just did in front of them.
Somehow I have failed to see that weekly I pour out to the open public my blog filled with mental ramblings that have ripped free from the dock and floated out into the view of the world and nobody YET has mentioned that I should cut off my own fingers and stop writing.
Meh… that's different!
I can do this… sorta, right after this blog, facebook, words with friends, and hey.. look.. it's Etsy!
There is a song, “When Hot Gets A Little Cold”
by the amazing Cyndi Lauper, that always pulls so many thoughts into focus when I hear it. Makes me look at all of the things that I thought were so hot, things that I knew I could do, the life I thought I was leading. Sometimes it's so easy to let things burn hot.. then let them fall away. Like a hot match, you hold it so tight, fearing it will fly right out of your hand and burn you if you don't hold it tight. But that spark only lasts so long if I don't find a way to hold on to it.
There are so many things through the years that I've been passionate about, but it grew cold so fast and I've almost forgotten about them now. What does that say about me? How do I keep from burning that fire so hot that I can't hold that light long? Can I be a writer, a crafter, a mother, a wife, a friend, a blogger, a vegetarian, coffee lover, a woman… and so much more, without losing something?
Perhaps it's fear.. fear of losing the ground I'm standing on in order to take the chance of leaping. Instead I look around and wish I was fearless and could be great.
Like almost every American woman over the age of 40, I am at that place where things that I once thought were important have slid back and moved into a different priority. Day after day we are presented with images of what makes us look “pretty” or “successful” or even better, “happy.” Most of those things are fake and we all know it. However we still try to carve our lives to fit into the box that social media and television want us crawl into. But when you move into a different stage in life, no longer bouncing toddlers or chasing the American Dream, you find that your needs and desires change too.
This week has just been a tough and stressful week. But when I looked at what was stressing me out, I kind of felt guilty for having those feelings. Here I was screaming about hardwood floors not showing up on time to be installed in my house, and delays in repairs that needed to be done and I get a text from one of my dearest friends saying that at the last minute they weren't approved for their loan and they didn't have a place to live. And I sat there, still clinging on to the last traces of my selfish feelings and frustrations and feeling a little ashamed for thinking my problems were even worth getting upset over.
Give yourself permission to have bad days
We all go through different stages in our lives, there are moments when we are hungry and need to work hard and push through so we can have the things we want and need. When I was in my 20's and even some of my 30's, that struggle and effort to make ends meet, meet the demands of a family, and have a decent life was part of our daily routine. There were times when we didn't have enough money to pay all of the bills, times when we weren't sure if we could keep a roof over the heads of our children, and even times when we went without.
We all have different life paths and that is okay. Just because we have what we need for today, doesn't mean we don't appreciate and understand the struggles of those who are still climbing up the steep hill.
Today I had to walk away from feeling guilty about complaining and accept that we all struggle in different ways and allow myself to see that this is a bad day, not a bad life.
Don't compare yourself
I will likely never be the same size 5 that I was in college. It's not that I can't be, but the fact that I accept that I don't need to be. I won't have fake lips, a booty that can twerk, or a private jet. And that's okay. What I want and need in my life is to feel good inside my own body, love the life that I worked hard to have, and to let go of comparing myself to others.
I lost 15lbs recently, and at first I was feeling pretty negative about the fact that I work out, eat light, and still have more jiggle in my wiggle than I would like. I looked at the women in places I would visit and wonder how I lost control of my fat and they didn't.
Here's the thing, you don't know what someone else is going through by looking at them.
When you compare yourself to others, you make yourself feel like you are second best to something you really can't understand. I won't ever know what it's like to be so stressed that I can't eat, lose weight so quickly that people think I have an eating disorder, and I am truly thankful for that. But I wonder what people think of me, do they question if I should spend more time in the gym and less time writing? And I have to let that go.
Do more of the things that you enjoy
These days I am spending less time on social media and more time talking to my children, enjoying sitting outside and watching the clouds float by, and accepting that 40 something isn't so bad. Recently I came to accept that life is so short, too short to live it any other way but happy.
There are good things about every day waiting for those who are seeking them out.
Today instead of being stressed about some recent issues, I am taking time to enjoy some of the sweetness that hard work made way for. I deserve it!
Do you know how many times I have “died” and somehow been resurrected? Really? I don’t even know how many times myself. But apparently if you piss someone off enough you will become “dead” to them. I guess I could be considered a zombie since I don’t feel dead. In fact, I feel just a bit more alive now that I have accepted my death.
It’s odd though, walking around in this world with knowing that someone out there has declared you dead and yet you are realizing that for the first time in your whole life, you feel pretty good. If living meant putting up with bullshit and being used like a dirty rag in a cheap whore’s hotel room, if being dead meant not having to live like you have to keep caring or else you might turn into the “angry mean-spirited shrew who poisoned the lives of anyone who tried to come close to her, and wallowed in her own vile bitterness” then being dead and relieved of that stress is exactly what I want to keep being.
I’ve been dead before. Dead just long enough that I forgot why being dead was a good and quiet thing and let down my defense. Dead long enough to want to believe that people can change and giving them another chance would be good for not only my own heart but to forge a relationship between my children and their relatives. But then I didn’t realize that I would be stabbed multiple times in the heart before I would be allowed to die again.
Here’s the nice thing about being dead. For the first few days it feels kind of bad. There is this bad taste in your mouth that sours everything and makes you want to lash out at the one who murdered you. You really want to let them know that it was wrong of them to be so cruel for no damned good reason. You want very much to scream and let the world know you are still alive and won’t be forgotten. But that doesn’t last, trust me. Because after a while you start to feel as if you understand what your life was supposed to be like and start to put things in order of importance. The next stage is the realization that being dead also meant being relieved of the mortal connections and you are free to move about the cabin. I started living, and living like I am proud of my life and who I have become. I don’t need your approval or your guilt. I don’t have to give you my attention any longer and not giving you my attention drives you mad.
I would rather be dead than be mad. Dead feels good, it allows you to let go of the past, let go of the hurt, and best of all you don’t have to be responsible for anyone else’s mistakes.
So take care Murderer of your own Children, you won’t be missed. You won’t be allowed to murder me again. And best of all, everyone is so proud of me for finally seeing that death can be a glorious rebirth.
The Dead Girl
( Originally published July 24, 2012, after one of the MANY times I was dead to my mother. )
Proteins found in the spinal fluid may serve as biomarkers to help doctors cut through the clutter of symptoms that show up in two groups of patients — those with chronic fatigue syndrome and others with lingering effects from Lyme disease. Different sets of proteins discovered in the two groups indicate these are distinct and distinguishable disorders and that both involve the central nervous system, researchers report in the February PLoS One.
“This provides strong evidence of a biological component” in these conditions, says study coauthor Steven Schutzer, a physician and immunologist at the University of Medicine and Dentistry of New Jersey, in Newark. “There are abnormalities in the spinal fluid, which is really a liquid window on the brain.” But he cautions that the findings represent a first step in seeking biomarkers for the conditions and don’t reveal whether these different protein signatures cause the syndromes or result from them.
Chronic fatigue is a baffling condition marked by prolonged and severe tiredness that isn’t resolved by rest. Its cause is unknown and is often difficult to diagnose and treat. Women are most commonly affected.
Lyme disease results from infection by Borrelia burgdorferi, a bacterium spread by deer ticks. It is treatable with antibiotics, but infections can go unnoticed, delaying treatment. Also, despite clearing the bacterial infection, some patients continue to have longer-term symptoms, including fatigue. Scientists have wondered whether such post-treatment Lyme problems are a form of chronic fatigue, but a connection has never been ascertained.
In the new study, Schutzer and his colleagues analyzed spinal fluid samples from three groups — 11 healthy people, 43 diagnosed with chronic fatigue syndrome and 25 previously treated for Lyme disease but who were still experiencing cognitive problems and fatigue.
Analysis of the fluid samples detected more than 2,600 proteins in each group. Most of the proteins appeared in all three groups. But 692 proteins turned up only in the Lyme patients and 738 others showed up only in the chronic fatigue group.
Some of the condition-specific proteins may ultimately serve as biomarkers, Schutzer says. Identifying 20 or 30 proteins that show up consistently in a condition — but not in healthy people — could form the basis of a diagnostic test for the ailment.
“I think this a great first step,” says Joseph Breen, a biochemist at the National Institute of Allergy and Infectious Diseases in Bethesda, Md. “What’s exciting is that it looks like they’ve been able to tease out differences” between groups of people with these conditions. This finding will need to be validated in more spinal fluid samples from greater numbers of people who have these conditions, he says. A test using blood samples would be even better, since blood is more easily obtained, Breen says.
The new data also provide leads for other researchers to investigate, such as discerning functional roles of proteins that show up in only one condition. This could shed light on the molecular biomechanisms underpinning symptoms seen in patients, Schutzer says.
Lyme Disease has a lot of misunderstandings surrounding it. In fact, there are a lot of people who have no idea at all what Lyme Disease is and how wide-spread this epidemic really is. Living with Chronic Lyme, I've read through the numbers, looked at the studies, done tons of research to try to find something that might make me feel a little better. But the most important thing I have learned about living with Lyme is that Lyme isn't a death sentence.
This is what you should know about Lyme Disease:
Lyme disease is caused by bites from ticks AND it has been found in mosquitoes, mite’s fleas and biting flies around the world. Lyme disease is an infectious disease caused by Borrelia burgdorferi, a bacterium classified as a spirochete.
There are over 100 strains of Borrelia burgdorferi in the United States, 300 strains worldwide and 5 subspecies of Borrelia burgdorferi.This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.
You can prevent infection by using tick-bite avoidance techniques. When visiting known tick-infested areas like the woods or tall grasses where ticks can crawl onto your body use some sort of insect repellant containing DEET onto exposed skin can help repel the ticks, but wearing long pants and long sleeves can keep them from getting to your skin as quickly. Everyone, including children, and pets should be examined for ticks when exposed to being outside. Ticks can be removed gently with tweezers and saved in a jar for later identification.
The most common symptoms of Lyme disease include a red, circular “bulls-eye” rash often accompanied by muscle and joint aches. BUT less than 50% develop any rash at all. I don't actually remember getting the tell-tale rash. But I didn't k
now I had Lyme Disease until about 10 years ago after I had been diagnosed with a whole grocery list of other conditions. Chances are that I got sick as a kid. I might have gotten a welt looking bite, but then again I was always investigating the woods or outdoor areas and rarely gave it a second thought to have a gash, a nasty bug bite, or hives from something I rubbed against. And the early symptoms of Lyme are more like getting the Flu. Lyme disease wasn't often checked for when I was a kid and even now, my own children aren't routinely checked for it, except my middle son who actually got Lyme disease when he was 10.
Researchers didn’t identify the cause of Lyme disease and connect it with ticks until 1981 and it wasn't until recently that doctors even knew of the tests to run for Lyme disease.
Lyme Disease is an epidemic. It's spreading rabidly.
Lyme disease isunder-reported. Of the reported cases only approximately 23,000 per year meet the strict criteria. The CDC has gone on record saying that they estimate the official cases reported may be 10% of the total number of cases that would be accepted if all cases were reported, so230,000 new cases per year is possible.
Lyme disease is medically described in three phases as: (1) early localized disease with skin inflammation; (2) early disseminated disease with heart and nervous system involvement, including palsies and meningitis; and (3) late disease featuring motor and sensory nerve damage and brain inflammation as well as arthritis.
I am somewhere in the stage 3. But I move in and out of flare ups thanks to my doctor and treatments of high doses of antibiotics, physical therapy, massage, heat therapy, and vitamins.
If you are treated within the first 30 days of infection, your chances of having serious complications are slim. Within that first 30 days doctors can control this disease, you can greatly reduce the bacteria in your body and allow your body to destroy the rest.
Lab tests for Lyme disease are not reliable. A person may test negative for Lyme disease and still have the disease. In 1988 the NY Health Dept. warned physicians that the ‘two-tiered' (ELISA/Western Blot) criterion was missing up to 45% of positive Lyme cases. In 2005, a study by John's Hopkins University concluded that the IDSA-endorsed two-tier criteria was missing 75% of positive Lyme cases.
When I took the test in 2003 I tested positive. I've had the test a few times and each time I test positive. This means the bacteria in my body is alive and thriving.
The following signs/symptoms may be present in those infected with Babesiosis:
nausea and vomiting
shortness of breath
low to normal range leukocyte counts
possible elevated levels of dehydrogenase, bilirubin, transaminase
difficulty swallowing or chewing,
arthritis (in small joints of fingers and larger, weight bearing joints),
Osgood-Schlatter's Syndrome (water on the knee)
gout-like pain in toe
muscle spasms to the point of dislocating joints and tearing muscle tissue
leg and hip pain
“drawing up” of arms
“growing pains” in children
carpal tunnel syndrome
paravertebral lumbosacral muscle strain/spasm.
Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. The symptoms may continue for long periods of time, subside, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently detected by commercial labs.
There are treatments, but they come with a kick. The Herxheimer “herx” reaction will make you feel like you are dying. A ‘herx' occurs when the spirochetes die off and produce toxins which can overwhelm a person's body. We feel sick, some of us feel mentally unstable. I have had moments when I could only describe how I was feeling as I was dying.
Do not take steroids if Lyme disease is even suspected!!! Steroids suppress the immune system and allow the bacteria a non-challenged environment in which to multiply. Many people who now suffer with chronic cases of Lyme disease were given steroids and are now chronically ill, disabled or have died.
If you suspect Lyme Disease, see your doctor immediately and demand that you be tested. Do your research and be prepared.
Through the years I’ve told my Lyme Disease story many times. But recently a new friend of mine asked me to tell her about Lyme and my story, and I realized that maybe I should tell it again. Getting the information out and telling my story helps to bring understanding and maybe even a step closer to finding a cure for this deadly disease.
How it began
I was bitten by a common deer tick as a child. Wild and free, I roamed the Tennessee woods and was often covered in bug bites and rashes. Looking back, I now remember when I was bitten. I was 12, almost 13 and I flicked the tick off as easily as a leaf out of my hair. Ticks were part of life on a farm.
A week or so later I got the bull’s eye rash and didn’t think much of it. I was always covered in poison ivy or something crazy, this wasn’t anything new. And it was another reason for my Gram to fuss over me, lecture me about being in the woods, and possibly get into trouble for being where I shouldn’t have been. I let it go. 2 weeks later I contracted chicken pox, and my fever, aches, and pains, and early symptoms of Lyme disease were mistaken for chicken pox.
But my life took a sudden turn, and I’d never feel like running wild through the woods again.
After that year, I battled with feeling tired, weak, lacked any appetite. I was called “sickly” or even “lazy, ” and my complaints went unheard.
Things got worse
As a teen I was always tired, I would sleep away the weekend, went to bed at 9 and protested getting up for school. My body hurt, my skin was so sensitive that I was always uncomfortable. But along with this my family life struggled and my health wasn’t important.
Years went by, I would see doctor after doctor and complained about how I felt. But my fears were unheard and blown off. I was told that I needed to “get out more” or maybe it was all in my head. So I stopped complaining.
All in my head
Even I started to think that the way I was feeling was all in my head. Doctor after doctor had a different answer to exactly why as a teen and young adult that I was constantly exhausted, forgetful, woke with such stiffness in my muscles and joints that you could actually hear them stretching out as I moved.
I was depressed, worried that maybe I had something very wrong with me and the doctors just weren’t going to do the right tests until it was too late.
As the symptoms started growing worse, my fear grew out of control as well.
The peak of my illness
After the birth of my 3rd child, my illness reached a peak. My hands began to curl up so tight as my muscles clamped down. I began to forget the simplest things, and I worried that I wouldn’t be able to care for my children. Something had to be done, I needed a miracle.
My first diagnosis to explain my tremors and slurred speech was Parkinson's disease. I began medication and was sent home. The meds were awful and left me sick and feeling out of it. I also gained 70lbs from the steroids and medications. When that didn’t seem to help, another MRI was ordered, and a new diagnosis of MS was placed upon me.
More meds, more side-effects, more time wasted. Perhaps it was a brain tumor? More tests, more waiting, more tears.
My miracle came when I heard about Lyme disease and what happens when it is left untreated for too long. I went to my doctor and begged for the Lyme tests be done. It didn’t take long for my results return that I had high levels of Lyme bacteria in my body.
I knew only a little about Lyme disease, it was something you heard about when you were going to be hiking out in the woods where ticks could crawl on you. But I couldn't remember being bitten recently.
I was an adult in her 30's, how could something like that have gone unnoticed for all of these years?
Misdiagnoses are common
Lyme disease is commonly misdiagnosed as several other diseases and conditions, everything from Mono to MS.
I was put on high doses of antibiotics by a doctor who had little understanding of how to treat Lyme disease that was not in the normal 30-day window of infection.
This was the first of many times I would go through the terrible side effects of the Herx reaction to treatment. I would suffer for a few more years until I found a doctor who not only knew of Lyme but treated his Chronic Lyme patients with innovative therapy and constant monitoring.
A good Lyme Doctor becomes your best friend
He changed my life and has been instrumental in giving me power over my disease. Never once has he blamed any of my wacky symptoms as being “In My Head” as I have heard other Lymies being told. Instead, he asked me more in-depth questions and talked to me about how we would manage my symptoms.
He gave me the power over my treatment and never makes me feel like I am a victim of something terrible. His gentle smile and ability to laugh with me is always a comfort when I come to him with fears and concerns.
Living with Lyme
Now I am treated with medications for tremors, physical therapy to keep my circulation flowing smoothly and massage therapy to work on the pain and muscle issues. I watch everything I eat and stay away from processed foods, meat, and artificial sweeteners. I have been vegetarian for about 12 years, but recently had to add in fish to counter the memory and joint issues I was having.
There are a lot of things that I keep up on to live with Stage 3 Lyme disease and live a normal life. Lyme disease doesn’t have to be the end of the world. But it’s a new world to live in.
There are days when I just feel so weak and want to curl up on the couch with my dog and sleep. Sadly giving in to that has led to weight gain that has added to my discomfort and frustration.
It’s easier to live a sedentary life when your body fights every movement you make, tells your brain how exhausted it is, and retaliation against most treatments. Sometimes I feel just too overwhelmed and feel myself on the verge of a meltdown.
Other times I find myself awake in the middle of the night so upset and frustrated that I can’t sleep. But when those fears become too much, I am so thankful to be able to wake my husband up in the middle of the night and know he will always make me feel better. I have amazing friends to lean on who always encourage me and keep my mood up. I know I am truly lucky to have such a great support team.
Invisible Illnesses are still forgotten about.
On the outside, we look like we are fine. But our bodies are fighting a war that in our lifetime we may never win. Today I want you to take just a tiny moment of your day and look up Lyme disease and understand what the symptoms are. Maybe you know someone who has it, and today you will learn just a bit of what they are going through. Thanks for reading! – C
I was recently asked about Lyme vs. Fibro, and I wanted to share here what my answers were for those who might want to know.
Here's the question – edited for privacy and space:
Thanks for posting this Tempest. A few years after a car accident I was diagnosed with FMS. I haven't had anything I can take to treat it because I react in very negative ways to the medicine they have tried me on, allergic reactions. back about a year ago I had a bull's eye looking mark on my arm and knew it was not something good, The next day I felt terrible, fever, very bad headache, aches, pains. I called the doctor. Who told me to keep an eye on it this was a Friday and they couldn't see me. I ended up admitted to the hospital where they ran a Lyme test that came back positive.
They also sent another blood test to a special lab in California that came back positive for Lyme. My doctor treated me with 40 days of antibiotics, I had some other things come back not so good on my blood work, so they not only sent me to an infectious disease doctor but a hemoc..hemotologist/oncologist.The ID doctor ran the same two Lyme tests, and they came back negative…he told me I did not have Lyme disease. he said even having been treated for 40 days the test would have come back positive…my regular doctor did not agree with that and said the antibiotics would have caused negative results.
The odd thing is I have so many of the symptoms of chronic/long-term Lyme disease for so long, even before all these tests, that my doctor thinks I've had it even before that bullseye mark. I had to report to our local center for disease control…they confirmed for me that in spite of other people thinking you can't get Lyme disease from ticks in Florida, that you can, but the numbers aren't that high.
when I was a few months old I nearly didn't make it…all my parents know is the doctors told them I had “black measles” which also became known as rocky mountain spotted fever…caused by a tick bite…but in Florida? My parents and I have concluded that it was “hemorrhagic measles” This was in 1963, so I'm not sure anybody had much information about this…I've tried to explain to my doctors that I think my ongoing problems have something to do with having that…none of them seem to think it's of any consequence.
If you don't mind, I would like to hear more of your experience with Lyme disease and what if any treatments you have had. Did you get lots of headaches? I rarely have a headache free day, plus all the other symptoms of fms and or Lyme.
Thanks in advance for your consideration! I hope you are managing the best you can and not suffering too much. Like Faefactory says…it's nice to know you are not alone.
And here is my answer.
You said you have FMS.. do you mean Fibromyalgia syndrome? If so, here are a few things you might want to know about Lyme and Fibro. Lyme is an odd disease; it will mimic many other diseases. And because of this, it's one of the hardest diseases to diagnose. Fibro on its own is very difficult and will cause:
Widespread Pain, Morning Stiffness, Fatigue, Vision Problems, Nausea ,Sleep Disorders, Urinary and Pelvic Problems, Weight Gain, Dizziness, Chronic Headaches, Cold Symptoms ,Temper mandibular Joint Dysfunction Syndrome, Multiple Chemical Sensitivity Syndromes,”Fibrofog“: Cognitive or Memory Impairment, Skin Complaints, Chest Symptoms, Anxiety, Depression, Dysmenorrhea ,Myofascial Pain Syndrome ,Muscle Twitches and Weakness, Weather related issues, menstrual issues, Troubles Breathing.
But when you look at those symptoms, it's really hard to pick out of them which ones are Long Term Lyme disease and which are Fibro. It is thought that between 15% and 50% of those patients diagnosed with Lyme disease actually have fibromyalgia, Which is why my team have diagnosed my disease as Lyme with Fibro complications. Simply because I passed both tests for Lyme and Fibro.
Some of the key differences between the two are:
•meningitis •severe muscle and joint pain •dizziness •heart palpitations •neurological problems including memory loss, difficulty speaking, difficulty concentrating, and paralysis of the face (Bell’s Palsy)
But even as you look at it, it still looks like Fibro from a distance until you start taking the key tests to prove Lyme bacteria exists in your body. Understand that Lyme disease does become chronic in only about 5% of cases. Chronic Lyme disease, called post Lyme disease, does not respond well to treatment and can lie dormant in your body for years. People with post Lyme disease can suffer from recurrent symptom outbreaks for many years. When you are treated for Lyme, and it is active… the treatment will make you violently ill. It will make you feel in my opinion like you are dying. Your whole body responds with weakness, horrible pains, headaches, and more. The Herx reaction is when the Lyme bacteria start to die off in your body.
So yes, I do have headaches sometimes daily when I am in an active state. I had to change my whole lifestyle to fight my disease. I know my case of Lyme HATES heat, so a couple of times a week I have a very hot bath. It makes me feel sick. But it's fighting for me. Once a month I am lucky enough to have massage therapy that I have covered by my insurance company as my team of doctors have advised due to low blood circulation that I have regular deep tissue massage.
I have a team of physical therapists who work with my symptoms and help with massage, acupuncture, electric shock therapy, and chiropractic to help try to keep my body from locking down as it likes to do. I became a vegetarian and have found that I have a lot of trigger foods that cause pain and symptoms and I have to take them out of my diet. I maintain an average weight, even though my body would like to collect weight and working out can be painful. I go to the gym a couple of times a week and tell myself that I just want one more day with my family, and it's worth the pain for them.
It seems like a lot. But it becomes part of life and fighting a disease takes time and effort. The worst thing anyone can do is to let the diseases tell us what we can and cannot do. I will be there for my children to hand me their babies. I will dance with my husband at our 50th anniversary party that I am planning 40 years in advance. And I will not be sad that I have a disease, because I refuse to let it take my joy
January 1st.. New Years… the day when just about everyone has a list of things they would do differently this year. Perhaps they will be more organized, stop smoking, or plan to bring their lunch to work more often. Some like myself will drag themselves to the gym in hopes that they will eventually learn to like it. Others have learned that unless someone truly wants to change, setting resolutions are pointless.
I suppose instead of listing things that you have yet to do, perhaps some look forward to the time of year when they can feel as if everything can just be chalked up to the bad luck of the previous year and look hopeful to the upcoming months as a fresh start. All of these things aren’t necessarily bad things, just ways that we as people try to cope with time.
1 year = 525,600 minutes
525,600 chances to do something different. But how many of us actually take any chances at all?
What will we learn? What will we do to improve our lives or the lives of someone else?
This year I learned some pretty important life lessons. I found things I would do differently. And I can see the changes clearly now for both better and some for worse.
I learned that there are people who for different reasons love and accept me for who I am. They understand that I am not always the easiest person to deal with, and still treat me kindly and with respect. They give me hope when I feel as if I am hopeless, teaching me that this is something I can work on myself. I learned that growing up is the hardest thing to do. It means having to see people for who they really are and learning to accept that in spite of wishing otherwise. I learned that no matter how difficult the situation is, you don’t have to make it worse by being abusive. Being kind or being quiet is usually the best way to answer any conflict.
Did I make resolutions for the new year? No.. I’ve made the choice to do my best to use my 525,600 chances to learn to accept myself for who I am, treat people as if I might never get the chance to say I am sorry, push to take advantage of the 525,600 opportunities to be a better person, and most of all learn to enjoy every minute of it.
There are moments when you just have to stop and look around to see where you are. Sometimes I feel like I am always moving, life is passing by so quickly and I really just need to pause and look around to see where I have landed. Have I any idea where I am going?
Most of the time, yes.. I know where I am going and move one day at a time to get there. Although there are always days when I feel like I am just annoyed with the place where I have chosen to pause life and take stock of it. It feels like I have come to the end of a season of my favorite show and I am right at the cliffhanger screaming at the TV “What the hell just happened?!?”
When Lance died, life chose that moment to press pause on life and force me to take time to stop my forward movement and look around. It was shocking to my system to be forced to stop. Usually it is my own doing that causes me to reflect. But this sudden halt to my routine jarred everything as my life came screeching to a stop.
I looked around, devastated at the loss and tried to figure out what exactly to do next. His unexpected absence from my life ripped a hole right through the center of my map. Without direction I felt so lost and confused as to where I was heading. I never understood how much I had come to depend on him until he was taken away. I screamed out, demanding God tell me how I was supposed to keep heading in the right direction when he just ripped my best friend away from me, the person I went to when I needed to be set straight. How the hell was I supposed to be ok now? Tell me!
I am a defiant one; I don’t always play well with others. I hate being told what to do. Tell me to relax and I will fight you all night. Being that way makes it hard to take advice from others. But as I crumbled at his death, others came forward with help and warm welcoming arms. I just wanted to break down and sleep off this pain. They weren’t going to let that happen, these welcoming hearts that were always there for me and just waiting patiently to be seen.
They shared moments of their own break downs, losses, and pain. Friends reached forward and held me up. My real friends rushed forward and helped mop up my tears and understood as I lashed out at the heavens. I found new friends who were part of Lance’s life and now we were brought together by the bonds of grief at his departure.
Now as I take a good look around I see that I am still on the right path and I have the love and support of many behind me. I don’t think that Lance died because I was dependent on him, I think that his death allowed me to see that I am strong because I have an amazing cast of friends and family supporting me and I can’t go wrong with them at my side.
It still hurts to miss him as much as I do. I still think I see him in crowds of people, hear his laugh in random places, and consider his words of wisdom when I am considering what to do next. I hope that never ends. But I know it is time to press Play again and get moving along.
It was once so heavy, this boulder of emotions that I carried around on my back. I allowed it to grow bigger and bigger as I added parts of my life that were dark and horrible to feed this creation of mine. I carried it with me everywhere I went. Fear kept me from ever leaving home without it. It didn’t take long before I was weakened by the load. But I refused to let it go, I grew dependent on that weight. so tired at points from moving his heavy stone from place to place in my life, that I often felt so weighted down that I didn’t leave my house, didn’t grow and enjoy life as I should have been allowed to. I not only hated this boulder and loathed the life that it gave me, but I also began to have a relationship with it. I named it, I fed it, and I cared for it with my whole being. I sought out other people in my life that also had a relationship with their pain as I did with mine.
I knew it was there and protected it with deceptive conversations and excuses. I hoarded it with lies and sheltered it from anyone who wanted to take it away. This was my life, my burden, my addiction and I would be damned if I let anyone take it away. I became so comfortable with my burden that I began to build layer upon layer of armor around it to shield me from ever having to live without it. But why?
When I wanted something more for myself, having been empowered by the layers of armor that I wore around, I was so heavy with this growing boulder of my pain that moving was almost impossible. Then I saw what needed to be seen, I had to unload my pain and let it go. Let it go… really just allow that boulder to become smaller and smaller. Allow those moments when I felt so alone and so unwanted to just peel off and fall away, I had to allow the past to shed off. I don’t want to carry this around so heavy that it threatens to lay me down upon the ground and smother me if I can’t control the burden anymore. Instead I want to be free.
This stone grew lighter with moments of happiness that I allowed to become more important to me than my pain until it became only a stone in my pocket that I have concentrated every waking moment on keeping small. I know it’s there, I know that without control this will grow out of control again and I won’t know how to return.
I know where it started, feeling responsible for other’s pain. I always felt as if I were the one everyone looked at when life began to become unbearable even as a small child. I would nestle into the warm arms of my great-grandmother who would hold me until my small body would need to be free to run around. But I could tell that she had her own pain that I wanted so desperately to calm. Perhaps it was the loss of her soul-mate, the life that she left behind to become a mother, grandmother, and then great-grandmother. Perhaps she had her own burdens to carry that I never knew about. She would always look at me when she needed reassurance, her beautiful blue eyes would sometimes grow wet with tears that would always cause me to run to her and want more than anything to see her smile again. I still think about her every day and wish that I had been kinder, more loving, listened more, gave more time to her, asked her more about her and her dreams, and told her more that I loved her.
I know she carried her own feelings of guilt, responsibility, and they were as heavy for her as they were for me. But, I think that when I look at my life now, I have worked so hard to become a good person that she would be proud of, I know she wouldn’t want me to feel guilty for any part of my life. And that is where I have to stop myself from feeling like I am not good enough for this life that I live and own it.
I can’t say that this road to where I am in life has been easy, or that in truth that it has been too difficult. I tend to live my life from my heart, in spite of knowing how to guard it. I have always tried to look at things and feel which way to turn. If it feels wrong, then I know I shouldn’t be a part of that path. However, that has always called for me to question myself over and over and wonder if I am on the right road.
I have a lot of guilt about leaving a life behind and moving on for what I know was the right direction. I had to make hard choices about who to stay in contact with and who to let go. I know I don’t always believe in myself as much as my husband and friends seem to believe in me. But I am learning and slowly but surely my boulder has become just a tiny stone in my pocket that I carry around as a reminder of who I used to be, who I have to work hard not to be, and where I want to land.
One day, I’d love to reach into my pocket and find I have lost that stone and learned how to live without guilt and the bad memories have been forgotten. I’ll let you know when that happens.
Live happy or at least fake it!
( first published Jun 11, 2012 after coming to terms with the fact that I don't have to live a life of guilt. I am thankful for the life I have been blessed with, it's time to enjoy it. )
A couple of years ago I found a few friends that I thought were gone from my life, but found them again when I started using Facebook. Finding them again really brought up some old memories and here's what came out of them. The Quad was this area between the buildings of my high school. We all had to pass through this open area to get from class to class. There was a picnic table, 1 tree, and a bench. No grass, no comforts, just this hollow place where sometimes we gathered.
* Update – Since writing this a few years ago I was able to catch up with a couple of those people from the Quad. We lost Lance last year to a tragic accident. I tried to stay in contact with the others but it just wasn't meant to be. I suppose we all have to grow up. *
In the Quad
It’s been a while that I thought of them, something would remind me of them and I would smile. I’d hear a song, see a flash of neon green, a strip of black lace, or even a scent.. and I’d go there, to that place in my mind. Misfits all of them really, this motley group of children gathered around a picnic table in the dead center of the buildings. Every morning, each would come racing to get to table and wash away the night with laughter and Mt. Dew. When one was missing, it was disturbing and often one of us would go uncover why. No technology assistance… just pure effort, walking, running, or borrowing a car to find out why one of us wasn’t where we should be.
It was safe there, this band of sinners. The small watched over by protective broad shoulders, the weak backed up by sharp mouthed little warriors who feared nothing except rejection. We were family, bonded together stronger than blood. For most of us, it was better.
We moved through the years ignoring the inevitable and not thinking far past the hot summers and cool river. We didn’t talk much about the future, it would mean we would have to separate, and that wasn’t something we wanted to consider. Even when one of our youngest would graduate and leave us a year or more before the others, we bitterly denied it and begged her to stay.. fail so she wouldn’t be lost.
As with all, there were feisty fights of willful young women and young bucks ready to claim a prize. But rarely did we claim each other, and gave hell to those who tried. No, we dated outside our circle.. and rolled our eyes in annoyance at the outsider’s attempts to join us. Our males making low threats of harm to the dashing young man who’d charm one of the girls away, but ultimately it was up to her. And the others.. we’d wait, and pick her up when she fell. They did for me.. time and again. Always warning me to stay away from him, everyone knew he was no good. But always knowing I’d go back.
And when I dared to go beyond the walls of safety, away from my school to trust the one who shouldn’t have been trusted. I told none of them, I kept it secret because I was just doing what I was told. Perhaps it was just shame that kept me to silence. An evil crept in and threatened my core and I swore secrets that should have never been made.
My pack knew when he’d broken me.. and said little so I wouldn’t be further insulted. They knew.. and I knew it hurt them as much as it did me.
Things changed that summer.. Like a bomb went off in our center, and it was never the same. We all scattered in that terrible storm.. some as far as around the world. We were lost, lost to each other and lost to ourselves.
But I hear the music sometimes.. I remember their names. And I wonder.. where have they gone and will I ever see them again?
In August 2012, I lost my best friend in a terrible accident. He was so important to me and I was so freaking mad after a few months that people started to worry about me. So after a few months I went to a therapist to try to feel better. She tried to explain the steps of grief to me and I explained that I knew all of that and I STILL didn't feel like I was ready for this “good-bye” step that everyone was telling me that I needed to take. So she suggested I write a letter from my friend giving me permission to let go. Truthfully, it was and still is stupid. But what came out of it wasn't crap.. and it did make me start to understand how I was supposed to live without him. So, for your reading pleasure, I give you “His Letter to Me. ”
She said I had to write a letter. Not just any letter to anyone, but a letter from him to me. How in the world am I supposed to write a letter from him to me? He’s gone. Not coming back, not writing me any more letters. What is this supposed to prove… that I can truly hurt myself greater than anyone else?
This is ridiculous, he would have never been that formal.
My long lost friend,
Funny, but not helping. Always the comic.
Dude, you are dead…I can’t imagine you are in a great mood. And you are supposed to be helping me through grief. Being happy about being dead isn’t helpful!
I suppose that is better. But doesn’t really leave much room for a follow up lecture about how I am not getting over grief and how I am supposed to feel better that my best friend is dead.
What am I supposed to say? Welcome to the big circle of life? I am sorry I died? What is it I can say that is going to give you what you need to move on?
I think that is the point. There is supposed to be some closure to this and I am supposed to feel like you would want me to move on and I am supposed to come to some point where I can accept it.
That is bullshit. What happened is bullshit. There is no Zen answer to all of this. No mystical logic.
So, what can I tell you? I didn’t mean for this to happen. I didn’t mean to leave behind the people I love. I wouldn’t have if I had any choice. You know that! You know that I was in a good place for the first time in my life, I was headed in the right direction. Why the hell would I give that up? Why would I want to put the people I care about so much through so much misery? You wouldn’t have. I know you didn’t mean for this to happen. It was an accident.
Yeah, and I am sorry that you are so unhappy and it is because of me.
Yeah, me too. But the point of this isn’t for you to be sorry. It’s for me to try and find a way to cope with going through the rest of my life without you in it. It’s for me to try to come to terms with knowing that everyone one day must move on. It’s for me to find some sort of magic key that unlocks my ability to accept this and not feel the way I do.
And she thinks that you writing a letter from me is going to help? Anyone who has ever gone through such a loss truly understands that you don’t stop talking to the dead, you just stop making the sounds out loud so people don’t think you are crazy.
I don’t know. I just know that I am so sad and unhappy that you are gone and it’s not a good place to be in. I just want to feel better. I don’t want to drown in this grief and sadness and turn into something I can’t control.
We came to each other for therapy. We supported each other through some pretty hard times. That’s a trusting place that is hard to get to. I get it. You don’t think you can give that trust to anyone else. Lots of people feel that way. Even when they don’t lose someone they are close to. But it’s time to start reaching out to those that are still there in the living world to help put you back in that good zone.
I do try. I try to put on a damned happy face and get involved in new things to keep me busy. But I need you…
Always have me, you know that.
I don’t want to say good-bye. That is what everyone keeps saying I need to do. To put some closure to this and I don’t have it in me yet! I still look at your pictures and hear your voice. I still wait for the phone to ring at the same time every day. I am not moving forward!
Maybe they consider good-bye as a healthy way of moving forward. They don’t understand what you and I know about why you don’t say good-bye. They think that if you can put this part of your life to rest that you will feel better and the weight of it won’t be so heavy on you. They don’t understand that you look at the pictures to make yourself happy, not to make yourself sad. They see you hurting and want to help. But you know now, time has passed, that I am not calling anymore. You want me to, you want the phone to ring. But you know now that it isn’t me… I am not calling you. So, you are moving forward… just slower than you or others might want.
Are you angry with me for being weak about this?
I couldn’t be angry with you for that. Unless you weren’t taking steps to get better. Or if you were hurting your family because of your anger. But you aren’t. You are just trying to move through some pretty big things right now and it is taking a lot of work and effort.
You will get through this. You have gotten through worse with much less support. And I am sorry I wasn’t a better friend back then to be able to help you.
You don’t have to be sorry anymore. But… you are right. This is hard, this is horrible. But, you are right… I have a lot of support and I am in a much better place than I was the other times I had to get through hard things. I just always thought we would grow old together and always be close.
That is where you are confused. We will always be close. You will never ever forget the special bond and friendship we had. I will always be special to you and nobody is asking you to let that specialness go away or be forgotten. People are just concerned that you are so sad about this that you will forget THEM.
“I don’t know if I can do this again… it hurts when I try.”
Just do it… once you start it will hurt at first, but you will see the reason.
“Every time I think about it, I just want to curl up in a little ball and cry.”
Well… maybe that’s because you need to get over something.
“Maybe I do, but is it really worth the pain?”
I am sure it is… just one step at a time.
“It sounds so easy, but getting slapped for the truth sucks.”
Nobody ever said it would be easy.
“I don’t need it to be easy, I just don’t want it to be so ugly.”
“I’m close, so close… but… who am I doing this for?”
Do you really need someone other than yourself?
“No, but it would be good to know that this isn’t just a selfish endeavor.”
Again, does it really matter?
“What if more people get hurt? What if someone else tells me how wrong I am to think what I do?”
Is that what you are trying to do, to hurt people?
“No, I just want to get it out, to do what feels right.”
Then there’s your answer. Do what feels right. Stop being afraid.
“Stop being afraid… that sounds pretty hard to do.”
One step at a time.
“And then what?”
And then you start to become what you knew you were. Real.
“Like the Velveteen Rabbit.”
Like that damned rabbit who had to learn how to be real so it wasn’t forgotten and lost.
“That’s always the point isn’t it… to not be forgotten.”
Usually. Nobody wants to be forgotten.
“So I should just do it… forget what they said and just be real.”
I believe that was how this started.
“ One step at a time…”
No… one word at a time.
A conversation of a writer struggling to start again between the self and the writer’s voice. My writer's voice is very much like myself. I write because I enjoy the creative process and I have something to say. I write for me. Who do you write for?
Tell us about conversations with YOUR Writer's voice. Do you get along? Who is YOUR reader? Like this prompt? Let us know! You can also find other challenges here on Dancing with Fireflies or the Daily Prompt.
My heart clenches as the seconds click by, closer and closer to that moment when I know that there’s nothing left to do but hold your breath to keep from crying. I hate that I cry. I just want to hold on tight, pull you against me so that you won’t leave. I need you to stay, I need you to keep me from feeling as if I am a frightened bird fluttering against the wind. I need you to be there and never let go.
Trying to be brave. I know that the tears make me feel like a small child, but they well up under my lids and I know they are there. I am not ready to turn around and walk away, to get in the car and let it take me away from you. I am not ready to move forward in my life and accept any of this as the way it has to be! This isn’t fair, you shouldn’t have to go. I don’t want to wake up from this dream!
Pressing my lips together, I keep them from saying the things I want to say. I always tend to ramble when I hear myself start to lose control of my words. I want to be eloquent, but more often come out incompetent. It’s always so much easier to let my fingers sort through the thoughts in my head. I can control what escapes from my heart. But right now I just have to press my lips together and swallow back the desire to say that I don’t want you to leave! I don’t want you to get on that plane and leave me here! I don’t want to feel what I know is coming next.
It’s always silent, those first few minutes. As if everything numbs and I just need to find a way to adjust. I want to reach back, I want to redial the phone and hear your voice once more. I want your laughter and I need you to come back and make me sure that you will return. I am never sure, this part of me that isn’t ever really sure anyone will return. Why am I so afraid of being alone?
You remind me that this is the way it has to be and I nod as I know. I scowl at the idea, the knowing of this reality. I feel my skin as it searches for traces that you were there, a memory of touch. I don’t want to feel this way. I want to be strong and brave! I want to be able to walk away with my cockiness showing with each step away from you. I want you to look back, I want you to stand there and watch me walk away and ache to have me back.
The time is almost here and I know that you feel something too by the way you look down at your phone and check the time. There’s a look that passes quickly over your face, is it the same frustration and nervous ache that I feel? Or are you ready to go?
We move slower, as if trying to draw out the minutes so that we can feel more in those 60 seconds than any other day when we are waiting for time to pass faster. You look out the window and make small talk and I nod and make noises as if I am actually thinking of what you are saying not the whispers of my own thoughts. You tell me that it won’t be long and I nod and try to tell myself that too. But I know that once I let go, I won’t be able to pull you back and you will be gone.
I want to capture the sound of your voice, replay it over and over in my head as I prepare myself for the release. I can do this… I can let go and find a routine without you in it. I could do anything if I weren’t so damned happy to spend every day listening to your stories and laughing with you over silly things we have seen together. I could move to that beach house and write my novel, I could write a dozen novels if not for the time I spend with you. But I wouldn’t trade a single day.
Then it is here, that time. Time to let go and walk. Let go and move forward.
I don’t want this.
I curse under my breath as I try to tell myself that this is silly and I need to be tough. Everyone leaves, everyone moves on, everyone dies.
I don’t want to let go.
One foot in front of the other and I start to move again. I find the music on the radio and dial to something that will draw my attention away from the pain and growling words of my inner rants. The music starts to soothe and I am drawn away from my hurt and led gently to something else.
You will come back? Won’t you?
I know I’ll wait. I always wait for far too long. I keep that hope alive that somehow I am worth coming back to. You will find me, wherever I have wandered and wrap your arms around me tightly and pull me into your embrace. You’ll make everything feel better and kiss away my tears. You will softly press your lips against my neck and I can feel the heat of your breath warming me.
You’ll laugh as I hold on tight and allow me a few more minutes of this peaceful place. Nothing will feel as good as when you return. That simple moment will start to erase the memory of the leaving. Slowly things start to feel whole again and I am drawn back into the world of the living.
For a moment I start to think that this isn’t so bad, that there is always the return to make it all feel better. I swallow and nod as I try to keep this thought up front as you let go and slip away from me. If not for the leaving there would be no returns.