I have Lyme. I’d like to not have it anymore. I also just want cake.
So, I have a Mom. Secrets’ out!
I have this Mom, and, this Mom of mine, she’s like… smart and funny and quirky and likes caramel apples. But I’m not going to post about that. She would be all like “take that down”. For Mother’s Day (so cliche, everyone’s doing it this weekend and I hate to follow a crowd but, I must speak) I am going to talk about moments in my life. Hah. My life. Mine. Mine. Mine. But she’s involved. So… it passes. I am going to preface it with this though: I looked up “Mother” in the online Merriam Webster’s Dictionary (I continue to be so cliche), and one of the definitions was kind of… perfect. “Something that is an extreme or ultimate example of its kind especially in terms of scale.” The example it gave was all like “the mother of all construction projects or something dumb like that. I’m not going to use it like that. I’m going to use it how I read it. My Mom, is the ultimate and extreme example of her kind.
I am going to keep this relatively short for once (I just finished and am proof-reading now, and I have to tell you straight up, this is a lie), so you may have to trust me on a lot of that statement. To ode to someone who gave you life is easy. “Hey, thanks for like, bringing me into this world and stuff and not letting me die as an infant,” … Right? But I’m a jumble of thoughts so bear with me. I’m trying not to take the easy route. When I first became sick, like literal first symptom that happened to me waking me in the middle of the night, it was her who I called the next morning. When everything exploded a week later and I was in and out of Emergency Rooms with no answers, it was her who I called, crying on my living room floor because it had been a week straight of my heart racing in the triple digits and bouncing around my chest like a pinball in a pinball machine and I didn’t think I could live another day of it. It is a mother you naturally go to for these types of things right? It is a mother you think of when you feel yourself dying. After several months of unproductive doctor visits to specialists and their countless tests that turned up nothing… After several months of clutching my chest in extreme and extended and unrelenting discomfort, losing myself to well over 30 additional symptoms from an infection that raged in my body, brain, and nervous system… After several months of setting an appointment with a specialist, enduring each painful day that slowly lead up to my appointment and spending each day with the greatest of hopes in that specialist being able to finally bring me a diagnosis and relief… After several months of leaving an office in tears of crushing disappointment and fear, and then returning home to begin the search for another potential doctor who would only repeat the same experience… I had become so exhausted… mentally, physically, emotionally. After all of this, I can remember calling my Mother at some point, tired, scared, no where to turn… and I remember asking her “what if no one can ever find out what is wrong with me?”. I said it with so much fear, with tears in my eyes, not afraid that I might die (at that point, the idea had become a welcome release), but that I might have to continue to live. And her response is just so, so my Mom. Just so everything she has always been. I will always remember this moment. She said:
” I am your Mother. I will fight for you. I won’t ever stop fighting for you.”
She said some other equally as impactful things with it but I can’t remember those parts. I just remember that. I just remember her undying belief in what was happening to me despite sooo many tests indicating nothing was. And when so many doctors had turned me away, it meant EVERYTHING to have her say that. And fight she did.
Later, when I felt I might have Lyme disease, we would watch Under Our Skin together. Afterwards, we would look at each other with new-found understanding of just how much of a battle I could be facing in my near future. In fact, I think she watched it by herself once or twice more after I left. So she could learn all she could. For me.
She would find and call all three of the closest Lyme Specialists to me in my area to see who would get me in the soonest.
She would then fly from her home in Michigan to meet in me in Denver for my first appointment. She drilled that doctor the entire appointment. I barely got a word in. Because she was fighting for me.
After that appointment, she sat with me in the Denver airport well into the midnight hours during a snow storm waiting for a delayed flight home with me… not back to her home… but to my home, so I wouldn’t have to travel alone and begin my treatment by myself. When I suddenly became ill at that airport at 2 or so in the morning, she would walk right past a customer service line of well over 50 angry and frustrated customers to demand a refund for the delayed flight as I sat on a bench trying to keep from passing out. Despite her own exhaustion, once we finally got to a hotel I began having mild seizure activity and she stayed awake, sitting on the bed next to me and rubbing the back of her 32 year old daughter. She fought unhelpful hotel staff and booked a rental car and she ran in the snow across parking lots to sneak on the shuttle bus of a more expensive hotel just to be able to get to the rental car facility. She then, on few hours of sleep, drove me across the Rockies so I could be sick in my bed and not sick in a hotel waiting for a new flight. She fought for me.
She also spent hours and days calling and corresponding with Lyme groups both in her home state and mine, gathering as much information as she could for me. She wanted me to have a Plan B, a Plan C, a Plan D, and more. She wanted to know for herself all of the treatment options out there, how people were getting better and who was getting them better. She wanted to know about support groups and networking and any possible bits of information she could that might help me get well. See? Fighting.
Six weeks later when my Denver doctor’s treatment protocol caused me to nose-dive in to full blown focal seizures and illness so severe I had to be carried around the house from room to room, she saw what I was too sick to see… a doctor too incompetent or possibly a doctor too inexperienced for a case of my severity. She convinced me to see this other doc with whom she had already booked an appointment with and paid the appointment fee. Because she was fighting for me.
When new doctor became my sweet Dr. J and said “Tara, you’re going to need aggressive IV therapy, and you are going to need to get a central line installed so you can infuse your treatments and it’s going to be a long road, possibly years”, my Mom put her own life in Michigan on hold to move in with me so she could take care of me. She lived with me for six months. She rubbed my back and combed her fingers through my hair during many a seizure. She spent hours passing the long days and nights here reading and playing computer games while I lay sick on the couch 15 feet away. She put up with my mood and personality changes and my phobias about my PICC line and bossing her around about how to care for it, despite HER being the RN. Because she was fighting for me, even when I was difficult and out of it from medications and severe herxheimer reactions. And, some days I was just not graceful at all with how I handled the day to day struggle to make it through treatment. She never once lashed back or showed any frustration or resentment for her time that, many times, I did not show appreciation for. Many days, I think she fought for me against myself.
She flew with me back and forth to DC for Dr. J’s appointments several times. An exhausting, tiring, uncomfortable journey with no time for recreation or enjoyment.
Throughout my illness, if she wasn’t with me, she routinely sent me cards and little things filled with encouraging and positive reinforcement, complimenting me far too much, and always bringing me to tears or laughter or both. She built me such a flattering mirror in which to view myself. I probably needed it to get through my treatment. Fighting for me without me even realizing it.
A sample of the silly or thoughtful things “from Mom”
With the worst of treatment behind me, I look back now and see just how much she did, that she said she would do. She wasn’t kidding around or just saying those words to comfort me in the very beginning, she actually meant it. She said it and she did it. In the context of my illness, I view her as the one who carried me to the feet of Dr. J. I was far too terrified to see him. I believed his treatment was going to kill me. Yet her encouragement literally carried me to him anyways. I don’t think she really understands the influence she has. I would trust her to carry me to my believed slaughter. She has always been like this, and my illness just provided the extreme circumstances for her to really shine at it.
One of the reasons why I have grown so thankful for this illness is because it has shown me in great magnification truths like this. Truths like your Mother really will fight to the death for you. Really will sacrifice her life for yours. And now that I am much better and have started and am keeping this blog, you have her to thank as well. She has encouraged me with every post. I am sure half of you are reading it because of her. She tells everyone she knows. Everyone needs a cheerleader, one with a big ole’ megaphone who will not be silenced. She is mine.
So, Mom, since I know you are reading this. Thank you. You really helped get me through it. We survived. I didn’t die and I’m no longer living with 80% of those disabling and horrifying symptoms. Because you fought for me. I now feel like dragging you into a ring and proudly holding up your arm for everyone to see! But I won’t, you likely aren’t dressed for such an occasion. But actually, I just did this with my words anyways. And, you didn’t even have to put on your eyebrows for it.
You may now proceed to go ahead and deny this to everyone and/or tell me to take down this photograph.