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.
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.
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.
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.
Pictures from recent winter wanderings. 🙂