Evidently when you’re out and you’re extremely sick, and you have a giant bandage on your chest with a tube sticking out of the end of it, people assume you are in fact extremely sick. However, the reactions usually fall into a five categories.
1.The Infected: Grabs their children (or wives, girlfriends, etc.) and “discreetly” covers their own mouth in a dapping fashion as they walk slowly away.
Me to me, “Thank you, I’m not contagious. Resist the urge to cough. You are the only one that will find it hilarious. Na, do it anyways you deserve a laugh. Which I usually do end up laughing and coughing.”
2. The Toucher: For no reason known this stranger finds the need and a way to touch you. Repeatedly. It’s always in a reassuring way or some sweet old lady offering comfort…by touching you.
Me to me, “Thank you, it’s not like I’m not obviously already fighting off enough disease – let’s add whatever you had on your hands, arms, body….again thank you dear…Stranger. Let’s not make this awkward or anything.”
3.The Puppy Pity Eyes: This one is simple, a glance downward to the port a glance back up to make brief wide-eye contact and usually coupled with the occasional closed mouth half grin or a half a shoulder shrug.
Me to me, “Man, don’t to that. I’ll cry so fast. Just please…don’t. Or the opposite on angry days, Yeah, so what…I’m still rocking it with a needle in my chest! Now what!?!”
4. The Witness: This happens the most often because I live in the south, but regardless of where we go we run into the, “Have you heard of ‘Jeeessssuus?’” person. You must say this like a Southern Baptist Preacher, with extra emphasis on the “Gee” and “Zus.” Or the I’m going to pray for your healing right now individual!
Me to me, “Wow, I never in all my 33 years of being a believer thought about asking God to help or heal me…thanks, but I’ve known Him my whole life. We are homies.”
5. The Interrogator: Asks a million questions about what “that” is, what is it for. Then of course they have always heard of someone who did something to cure themselves. This one can be very rude. And one of the hardest to deal with or can be when I find someone with common struggle.
Now, this has become a joke between my family and I when I have to go out in public with my port accessed. I’ll say, “Are you ready for the awkward, confused stares and the, “Have you heard of Jeeessssuuss speeches? OK, let’s do this.”
I know what you’re thinking, that there is no way this is real. Why then darling, let me tell you a little tale…
The Case of the Toucher
One time in a doctor’s office a sweet, little old lady came across the room. I don’t know why, but I knew she was a “Toucher.” I mumbled to my Mom through my closed lips,”Mom…MOM, she’s coming over here…save me…oh no, oh no, oh no.”
Usually older generations recognizes what the port is and know that it’s serious. So here she comes straight for me as I’m nervously trying to not make eye contact too much because I don’t want to encourage too much interaction.
But again, I live in the South where everyone else’s Grandma is your Grandma too. And just to warn you, it doesn’t matter if you believe this ideology or not because the southern grandmas, they do. There’s absolutely no point in fighting it.
With her gentle kind voice she said, “You look so sad, it’s going to be OK,” over and over as she rubbed my cheek with her hand.
Now, you may be thinking, “Aww that’s so sweet. She just wanted to offer comfort.” And you know what, I agree.
But she was coming out of a freaking doctor’s office…obviously not somewhere healthy people go! The entire germ center of my brain is screaming and I think to myself, “I wonder if they will tell me what you were here for so I can get a shot for that too.” Followed immediately by, “That woman had the softest hands I’ve ever felt, I should have asked her what skin care she uses.” In all honesty, I’m pretty sure I mumbled both to my mom. Then like a broken record stuck on repeat kept saying, “She touched my face, she touched my face.” Adding emphasis on a different word each time.
She. Touched. My. Face.
Slowly turning, looking back at the door she left out of and added, “She had the softest hands I’ve ever felt in my life. I should have asked skin care she uses.” All of this out loud. In public. Which I realize as they call my name, so I stand up to go into the exam room still looking over my shoulder hoping she’d come in and in fact tell me what skin care she uses. She never did. I did however use half a bottle of hand sanitizer on my face, neck, shoulders and arms…just in case.
Need further evidence you say? Well how about this one…
The Case of the Witness
Sister-in-love (we don’t say “in-laws”) and I are in the middle of nowhere town in the parking lot of Fred’s containing all of maybe four other vehicles, including ours. I make the usual joke, “Are you ready for the awkward confused stares and the, ‘Have you heard of Jeeessssuuss speeches?’” she laughs it off saying there is no one here and she doubts we will have to worry about it.
Bless her heart.
We get inside, gather a few things and make it to the check out line with just a few confused stares so we actually both start to think we are in the clear this time.
Uh, nope.
An elderly man starts to wobble over to me and my first thought is, “Oh no! He is lost, needs help or something!” He was wearing a baseball cap and his face was all crinkly with wrinkles as he smiled at me. I smiled back and he starts talking.
“Have you heard about Jesus?” He’s the kind of old man that chews on his words. And he asks me again with more enthusiasm as he hands me a pamphlet from his flannel button down shirt.
“Yes sir, and thank you for this. You be careful in this heat. God bless you.”
I grab my bags quickly and try to get out as he is still talking and I’m only understanding about every other word he is chewing out. Then I see him turn towards my sister-in-love.
Now I have a choice to make. Do I go back and try to save her, or do I just leave her to hear the whole spill like I did?
Ugh, I had to go back.
Just as I’m walking up he is handing her a pamphlet too. I laughed and told him she was with me.
That’s when he gave her two! As he motioned his head towards me, and said, “to share with a friend.” I’m not kidding! He gave her another one! Just because I was with her! Before you start and say it, I know I’m too nice. I can’t help it. It takes a lot for me to snap and even more for me to be rude to someone. We both laughed and thanked him.
As soon as the store door closed behind us, I mockingly say, “Oh I’m sure we have nothing to worry about…Thanks sis.”
This is a shorter example but one experience less than a year after my Port-a-Cath was put in, that will stay with me forever.
The Case of the Interrogator
I had a doctor’s appointment and stopped by my bank’s branch closest to his office to deposit a check. The teller was kind and went through the whole process.
Then she pointed to my chest where my port is. It was accessed (needle in with dressing) at the time, and asks, “What’s that?”
I looked down, “Oh, that’s my Port-a-Cath. I get medicine for Lyme disease through it.”
She leaned back in her chair, “Where do you get one of those? Seems like everyone is getting one lately.”
I could feel my blood being to boil and steam start shooting from my ears. But I swallowed that rage down, reminded myself she’s just ignorant and doesn’t know better. In my best Southern Belle charm replied, “Yes ma’am, it’s astonishing that 300,000 people are diagnosed each year and people still don’t know about what’s happening to people in their own community. It’s an absolute shame.”
With that I turned around and walked away.
My Granny always taught me a true Southern Belle could curse you out without ever saying a single foul word. I understand that more and more as I grow older and deal with ignorant people.
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