The Conversation I Remind Myself of When My Illness Makes Me Upset
About 15 minutes over the allotted time for my session with my therapist, and once again I’m in tears.
He asked, “Do you think you have any more right to be sad than I do?”
“No, of course not.” I defensively replied. Thinking this was certainly some kind of shrink trickery.
“Do you think you have more reasons to be angry or cry sometimes than I do?”
Again but with more conviction, “No! Why would I think that?!”
“Because I do.” He replied.
He started running down a list of symptoms I’d been experiencing.
Chronic nausea and vomiting, blurry vision, muscle tremors spasms, cramps, widespread nerve pain (fibromyalgia), memory loss, hearing loss, cognitive issues (brain fog), joint swelling, migraines, anxiety, insomnia, dehydration, low blood sugar…and topped it off with, “I don’t feel like I’m actively dying.”
I started nervously laughing at this point.
He looks up at me and said, “I don’t have these things happen inside of me every day.”
I cut him off, “That doesn’t matter. Even with it going on inside of me, because everyone has pain.”
To which he replied, “So then my question to you is why don’t you have the same compassion for yourself as you would another?” He told me to visualize the “worst case scenario version of myself” and I did.
I closed my eyes and imagined myself curled up in the fetal position rocking from side to side with tears rushing down into my ears from crying so hard. Hair in a matted bun, at best and the only color on my face is the red swelling around my eyes and lips.
And that far off pain stare. When it’s beyond the level of even explanation, just a blank empty void. I think that’s when our souls start pleading for us. When the pain is too deep to even form words those moans and groans and even silences are our souls crying out on our behalf.
When it was clear that I had this image, he asked simply,
“What would you do or say to her? Would you walk up and scream at her to get up and clean the house or cook dinner? Would you throw a million questions at her about college, relationships or work? Would you look at her with pity? Tell her she should be ashamed of herself for not having her hair and makeup done at this time of the day? Snicker at her because the latest medications made her gain some weight or tell her she’s ‘crazy?’”
I just started rambling, “No! I would wrap her up in my arms and not tell her it’s going to be all OK, but promise that I’ll be there even if and when isn’t. I’d grab a blanket, pillow and heating pad to set up on the couch with a table of medicine, supplies, water and snacks making sure all were within her reach. I’d put on ‘Harry Potter,’ Disney movies, Broadway musicals, or anything we could binge watch all day if she wanted. If she wanted to scream, I’d scream with her. If she wanted to cry, I’d cry too. If she just needed to sit in silence, I would do everything I could to drown out all the noise. If she needed to sit outside and feel the sun on her skin, I’d spend all day right alongside her. Anything I could do to ease her suffering and pain.”
He smiled that Yoda, Buddha, pastor grin, which I’ve brought to his attention several times, and told me to remember that next time I felt guilty for not being able work, or participate in an event or even take care of myself on a basic level. To remember to always show myself grace and kindness, even if others don’t. Even in the moments that no one else is around or when I begin to feel like a burden – I can picture the healthy version of me walking in and wrapping me up in compassion and comfort. Instead of allowing that negative side of me continue to beat myself up about things outside of my control.
That’s when I can feel the reassurance in me that we’ve (God, me, my family, friends and fellow warriors), we’ve got this! Reminding myself that I’m usually my own worst critic. I couldn’t possibly count how many times I’ve had to remind myself of this conversation. Or simply pose the question to myself, “How would the better version of you treat yourself at your weakest?”
Getty Image by pamelasphotopoetry
I'm searching for the words to try to explain my journey fighting Lyme Disease and all that go along with this life-altering diagnosis. In 2010 my world came crashing down when I was told those earth shattering words that many of us live to fear, “You have cancer.” I was in Washington state at the time and thankfully my mom was able to fly in and join the support system I had there. From there we came back to Mississippi and was seen at West Clinic and after two biopsies determining that they believed I had Non-Hodgkins Lymphoma. By the grace of God my tumors disappeared. I can remember being in the hospital and asking about Lyme disease. It was brushed off and treatment for histoplasmosis began. Several PICC lines and countless vials of IV medicine over an almost year and half process that round of treatment was ended. The next few years were spent in and out of the hospital and emergency rooms. A list of specialists a mile long diagnosed me with a list of diseases and disorders equally as long. With each new diagnosis or symptom, a new medication was added. It was only a matter of time before my body crashed under the weight of all the medications. In 2013 I was diagnosed with late stage neurological Lyme disease. The tests showed that I was undiagnosed for over 7 years. The crazy thing is that Lyme can mimic or cause Lymphoma so all those years I spent treating something that was caused by my Lyme disease. I started the first round of antibiotics via a PICC line in late 2013. By March of 2014 I had endured six PICC line infections, removals and replacements when the doctor's decided to put in a portacath. After nine months of IV antibiotics treatment twice a day of 3 different medications my body was falling apart. In the process of trying to kill my Lyme and coinfections the treatment was unfortunately killing me. I was bedridden most of the time and unable to enjoy life or even participate. It was after a very honest talk with my doctors that we realized this was not the path for healing. I worked hard over the next year and a half to try to rebuild my body after the havoc of Lyme and treatment. I lost 120 pounds, started eating healthy and exercising and took myself off every pain medication/ pharmaceutical that were flooding my body. It was during this time of sickness and hope for recovery that I found my true passion in life and enrolled in college to one day become a pediatric oncology nurse. Sadly, this window of health was short lived and by the end of 2017 I was beginning to show symptoms of my disease no longer being in remission. In early April of 2018 I was forced to face the truth and resigned from my job and started the process again of IV antibiotics treatment. Within the first dose of treatment the side effects began, chronic nausea and vomiting for hours on end. Excruciating pain and migraines coupled with severe muscle spasms and the loss of any muscle control at times. I don't know how to explain to someone that hasn't been through a life changing chronic illness what it is like to feel yourself slipping away. Or the overwhelming fear when you stare down at your own legs and your unable to stop the violent convulsions. Or the heartbreak that comes with discovering your teeth are breaking off because of the acids from throwing up so much and so often. And in the midst of all of this turmoil, knowing if you could only have access to higher qualified doctors and healers that you could return to a better quality of life; not confined to the four walls of your bedroom which has now transformed into a mini hospital unit. As it stands now, my doctor has informed me that I am out of options for beating this disease. The ONLY next available step is to check into a treatment facility that is designed to treat the disease and heal my body. I've been blessed in my life to have experienced some amazing and miraculous events. I'm truly grateful for having some of the kindest and most compassionate people sprinkled in throughout my life and over the years with this gruesome journey of living with a life-threatening disease. My fear is that at only 33 years old, after overcoming every struggle so far that this disease will rob me of so many more life experiences that were once in store for me. Or that even worse, I will continue to slowly deteriorate until I'm no longer myself or unable to recognize those I love or them me. In the meantime, I want to raise awareness about this disease and what it truly does to someone.
lymesouthernbelle