Admitting Defeat

Admitting Defeat

I’m sitting overlooking South Pond at Savoy State Forest.  I came for a two-night getaway at one of their CCC-built cabins, but I decided to pack up a day early and head home.  The weather is crappy, I’m not feeling well, and if I’m being totally honest with myself, I’d rather just be home. So, I guess I’m admitting defeat.

I’m disappointed that my trip wasn’t the rejuvenating, nature-filled mini-retreat I had imagined. Instead, it feels difficult and like I’m struggling against things.

Frankly, I’m tired of struggling against things.  I’m tired of being tired, and I feel burdened with a chronically ill body that experiences constant fatigue and pain.

But, what if, rather than feeling like pain and fatigue was a burden, I could see it as a blessing?  What if, rather than admitting defeat, I opened my heart to honor my truth?  And maybe sometimes that truth is being balls-out pissed that I feel shitty.  I’d rather just be honest with myself than struggle through the motions.

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Bog Pond, Savoy State Forest

It’s a constant learning, and if I’m open to it, it can be a blessing.  For instance, I now have a better understanding of how to say no, to push toxic people and situations out of my life, to protect my time and energy, and to detach myself from other people’s drama.

So, my trip didn’t turn out the way I wanted it to, but maybe I got exactly what I needed.

There is a calm in the steady rainfall and in the misty white shroud clinging to the hills.  The wind is blowing across the water, and it doesn’t resist; it simply flows.  The hemlock boughs are heavy with rain drops, and there is a gentle patter and rustle of wind and water through the oaks.

I saw a few newts and frogs hanging out as the pond lapped lazily at the shore. They didn’t seem to be bothered by the inclement weather one bit.  They just continued to do their respective newt and frog thing.

There is always struggle and suffering in nature.  But there is also balance and harmony.  Ecologically speaking, we know what happens when that balance gets disturbed. Often times, we continue to disturb it anyway.  But in disregarding Nature’s Truth, we create a situation that’s unsustainable.

I am a living being, and I am not exempt from this truth. At times, I will struggle and suffer, and if I choose to disregard my own balance, there will be consequences.  So today I choose to listen to my own truth.  And as I listen to the softly falling rain and head home to rest in my own bed, I hear the song of Divine Harmony.

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Rainy day waterfall

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Tannery Falls, Savoy State Forest

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A beaver pond in Savoy State Forest

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Fungus Flowers!

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Wish List

I have been chronically ill for the past 2 and a half years.  It started as lyme disease, and when I didn’t get better, it became chronic lyme, until I discovered (2 years later) that I actually have a lyme co-infection called bartonella.

It’s hard for me to talk about it at this point.  I get exhausted from having to explain it over and over.  No, I don’t have lyme, I have bartonella.  Who the hell has even heard of that, never mind what the symptoms are?

I have improved quite a bit, but I still struggle a lot.  I feel self-conscious about the agony that I experience.    So, I usually just push it aside and try to act fine.  A lot of the time, I feel alone.  It’s not necessarily a bad feeling, just more matter-of-fact.  But, still, I wouldn’t mind feeling a little less alone, but how can I do that if I’m so hesitant to open up about it?

I decided to make a “wish list” as a way to express myself a bit more.   It’s not a list of demands; it’s just a way for me to express my needs to the universe in the hopes that it may help me in my healing journey.  Maybe there are even people who want to help me and are willing to read it.

Laura’s Wish List

  1.   It’s okay to ask me how I’m feeling, but please understand that the answer might be brief.    I’ve noticed that some people show concern by asking questions, but I get extremely exhausted by having to talk about it over and over.  However, sometimes I would really like the opportunity to get things off my chest.  If I say, “I’m not feeling well”, please feel free to ask me, “Do you want to talk about it?” if you feel you can hold a compassionate space for me.  I may say “no”, but sometimes  I’d really like a chance to just be heard without anyone offering advice, trying to “fix it” in anyway, or telling me stories about their cousin or co-worker who had lyme (which is not the same thing as bartonella, although it is common to have both at the same time).  I just want someone to hear me.
  2. Please don’t give me suggestions or unsolicited advice unless you are a doctor who specializes in bartonella, or are suffering from/have suffered from bartonella.  If you have an article about bartonella you would like to share with me, that would be welcome, but please refrain from asking, “Have you tried…?”  Even if you think you know THE ABSOLUTE BEST CURE EVER, please just don’t tell me.  I assure you, I am well versed in my illness.  And to be honest, it just upsets me.
  3. If you invite me to do something, please try to keep in mind that I have physical limitations.  I really hate having to turn down invitations (especially since I don’t get many) because I’m physically unable to do something.  I may act fine, but I’m really not my old self, and I can’t do a lot of the things I love, such as going out dancing or going for long hikes (and I probably won’t be able to stay up late).  Give me a couple of options like going out for a walk or meeting for lunch.  That way I can choose based on how I am feeling rather than just having to say “no” flat out.
  4. Read something about bartonella.  Google it.  Spend at least 2 minutes learning about it, even if you’ve heard me talk about it before.  Maybe that’s a lot to ask, but I get really, really tired having to explain it.  Here are a couple of resources:  1)   Bartonella  Overview,   2)  Bartonella, A Stealth Infecton,   3) Unravelling the Mystery of Bartonellosis
  5. Please call my illness by it’s name: bartonella. Bartonella is different from lyme disease, although you can get both from a tick bite.  You can also get bartonella from other insect bites (such as fleas and mosquitoes), cat bites or scratches, and sometimes dog bites.  About 25% of people are asymptomatic carriers, but the infection only becomes acute if the immune system is depressed.
  6. Do something kind for yourself every day.  If there is one thing I’ve learned, it’s that self-care is so important.  Please do something to take care of YOU.
  7. Be kind to others.  We all have our own struggles, whether it’s illness (our own or a loved one’s), money woes, a stressful job, or any number of other things.  If someone is grumpy, try to remember that they might just be struggling with something that you can’t see.  It’s probably not personal.

Please don’t feel bad if you have done something on this list that I am requesting you not to do, or vice versa.  I appreciate all the acts of kindness and concern that I have received over these past 2 and a half years. This is simply a way for me to be clearer about what would be helpful to me in this particular moment.  I have no expectations.  It’s just something that I needed to release so that I can continue healing.   If you have read this, thank you for taking the time to hear it.

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Grief, Gratitude, and Guilt

I have been thinking a lot about what I call “The Three Gs” lately: Grief, Gratitude, and Guilt. This trinity of experiences and perceptions are like fully formed personas that live inside my head and triangulate my daily life.

Grief is the weathered soul with brittle bones that rattles deep inside me and shakes me to my core. Gratitude is the bright light that radiates warmth and has a gentle touch like the downy wisps of milkweed that travel on the wind. Guilt is the scared child with rheumy eyes that cowers in the corner, too afraid to come out of the darkness.

These three personas show up in many ways at many different times. Lately, I’m finding it interesting to see how they react to having chronic lyme disease.

Grief often shows up to express the loss over the person I used to be: the healthy one, the vibrant one, the non-cranky, able-bodied one. Grief mourns the loss of all I used to love and be able to do. Grief feels the agony that comes with missing those closest to me who have not shown up to support me. Sometimes it’s self-pity, but sometimes it is profound loss drawn from a well deep inside.

Gratitude is the hand that reaches out to help me up each morning. Some days I can’t take it, but I often do. Gratitude has shown me that I have so much to live for, even when my body tells me otherwise. Gratitude shows up in the incredible kindness of friends and family, community members, and people who I haven’t seen in many years who have gone out of their way to show their support. Gratitude is everywhere in nature, within the beauty that exists all around us, at all times.

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Guilt is the persona that makes me the most wary. It is needy. It seems to need constant reassurance, but will never be satisfied no matter how much you try to console it. Guilt is the one who tells me that I shouldn’t complain because things could always be worse. It whines in my ear and says that “At least you’re not starving, at least you’re not a Syrian refugee, at least you have all your limbs, at least you are not terminally ill, at least, at least, at least…” Guilt shames me into invalidating my own feelings because everybody has their own problems, and many of those problems are a lot worse. Guilt tells me not to be a “Debbie Downer” because, who wants to hear that?

Today was one of those days where the 3 Gs were hard at work.

I went to see an infectious disease specialist. To be honest, ID doctors have a nasty reputation within the lyme community. They are notoriously dismissive and unhelpful, so I did not have high hopes, but at the same time, I figured that I probably didn’t have anything to lose by seeing one.

My own doctor recently took me off of antibiotics because she is afraid of losing her license. Apparently that’s a thing: doctors can lose their licenses for prescribing long term antibiotics, despite the fact that they are often needed to effectively treat lyme disease. It’s a pretty messed up system, and thousands upon thousands of people go untreated and suffer because of it.

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Personally, I’m not in love with the idea of being on antibiotics, but I just figured it didn’t hurt to see if the ID doctor could offer any additional help. She didn’t.

To be more specific, the ID doctor told me that she didn’t believe that I had lyme disease and that my problem was psychosomatic. Furthermore, she told me that everybody has aches and pains and that I should just try to distract myself, be more positive, and try to live with it. In addition, she questioned whether or not I had these symptoms because I “seemed” okay.

Sadly, this is an experience that many of us “lymies” have, but I had never really had it myself until now. I felt unseen, dismissed, invalidated – and it really hurt!

I talked to the doctor for 20 or 30 minutes. I made it very clear that I disagreed with her. I felt angry and defensive, but I stayed civil and respectful as I tried to make my case. She thanked me for speaking so calmly despite our varying opinions, and in that moment, I could really tell that she saw us as fellow human beings.

At the end of our meeting, she asked if she could give me a hug, which caught me pretty off guard. That seemed like an unusual request from a doctor, and I was already really charged up and agitated. I definitely didn’t feel like hugging her, but I did.

I cried all the way home. Grief gripped me hard, shaking me by my shoulders, as anger and despair flooded through me – not even for myself as much as for all the people who suffer so much with this illness, and can’t get the help they need. I cried for all the people who suffer with other chronic illness and pain, knowing that each day is a trial for them.

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And after grief let go, I could feel the soft touch of gratitude surround me in an embrace. Even though it felt pretty awful to have my health woes so dismissed and denied, I am grateful to have been able to handle the situation with a relatively decent amount of grace. I am grateful to have had the chance to be seen as a fellow human being, a person with feelings who deserves to be hugged. And I am grateful to have had the chance to reciprocate that despite differences in opinion that I found upsetting. That is a true gift.

As for guilt? Well, guilt may try to creep in once I post this. Guilt will no doubt try to tell me that no one wants to read all this, and that I should just post a cat video instead. But I’m just going to plug my ears and say, “La, la, la! I can’t hear you!” Instead I’m going to go outside and enjoy the beauty that the afternoon has to offer.

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Pictures from recent winter wanderings. 🙂