A Twist of Lyme

Just four years ago, I wrote in great detail about my journey to Central Asia to meet my infant daughter. It was an illuminating time in my life; the most spectacular, heart pounding, inspiring moments of my life. Little did I know that this little girl, now three years old and all sunshine and smiles, would become my rock.

She doesn’t know it, for I would never burden her with the pressure of knowing that it is for her that I fight with my every being this terrible disease called Lyme. For the purpose of this book, we will call her by my nickname for her, “Mini”. She’s growing way too fast for me, but just as she should. And as she grows, she continues to inspire me. Her smile holds me up. The twinkle in her eye makes me laugh. The way she challenges me, and boy does she challenge me, reminds me that she needs a strong mommy to show her the way.

And so I do this for Mini and for myself, because all I have ever wanted to be was the best Mommy and role model I can be.

Invisible Illness

May 17, 2012

I don’t know when it became okay for people to decide that chronic illness comes with a forehead tattoo that says SICK. While I write on my own behalf, my words come to me with not only my own condition in mind, but also those of a few friends in similar non-Lyme situations and the thousands out there who are also in the same boat. It is not only for myself that I address invisible illness, but for the others as well.

Lyme is not alone in being an invisible illness. Many people suffer physically, mentally and emotionally on a daily basis without others even being able to detect it. I am told several times a day, “but you look great!” and of course I appreciate it, because no one wants to hear, “You look so tired,” or, ”You look awful.” But believe me, people do say those things.

You may not see it. I have some occasional balance issues. In fact, I ram into so many things that I have bruises all over my body. And you know, because I have such a problem with short-term memory, I can never remember where they came from. But, I can walk, even when you don’t see the issues I sometimes have with standing up and getting my balance, pleading with my hips to cooperate with me. Yesterday, halfway down the stairs, my legs gave out from under me and I went tumbling down the rest of the way, covering my head with my hands.

I have had hallucinations, but you can’t see me having them. I have joint issues, which unless I tell you or unless you were there with me when I dropped the $1,000 bottle of medicinal tincture on the floor at work because my right elbow gave out, you have no idea. And while I may walk more slowly at times, you probably don’t know that sometimes it feels like I am walking on shards of broken glass. Before I previously mentioned it, did you know that I have had no feeling in my shins for 23 years?

You might notice I get grouchy or teary, especially when Mini is being a typical three-year-old and doesn’t look happy to see me when I pick her up. Mini has a hard time making transitions. When she is in the middle of something, my arrival sometimes interrupts something she is enjoying, and when this happens, she throws a fit when she sees me. Which makes me cry in front of all of the teachers and other parents. But beyond my tears, can you see the war going on in my mind? I try to rationalize with what I know is true, that Mini’s not unhappy to see me, but simply is not ready to finish what she is engaged in. And while some might find my state unstable, do you realize how incredible it is that I am as stable as I am? I am a rock when it comes to this illness and I do not intend on backing down.

I live my life with the belief that most people mean well. I choose to think people are, on average, good people, or at least try to be. But I also think there are people who are inherently hurtful. In fact, some of my very best friends, who I thought were friends, have not even commented to me on social media or called me to see how I am. I have even reached out to some people only to be ignored.

I honestly don’t think there is a worse trait in a person than narcissism and, sadly, I have seen some of that lately – which is fine. It just means more people get filed in the narcissist folder and are dismissed from my world. I am happy to do this because I have wonderful friends out there. People who care. People who are doing things to help. People who answer my calls. But there are those who I assumed would be there for me and they are not.

Which brings me to one of my favorite quotes of all time (I have no idea who came up with it): “CAREFUL, or you might end up in my novel.” Welcome…

Here’s the thing, you learn who your friends are when you are invisibly sick, because unless you have the “OMG” factor, the big words like cancer, or if you clearly look frail or ill, or have had a dramatic event or accident, people don’t see you as ill when they see you dropping your kid off at school every day or driving through town. When you have a visible illness, people rally around you. When it’s invisible, many times you are left in the dust because even though people know you are ill, they assume you are feeling better because “you look fine.”

Sometimes I feel invisible. Sometimes I want to scream at the top of my lungs, “NO I AM NOT FREAKIN’ ALL RIGHT!” Just begging the universe for someone to see me. REALLY see me. Beyond a few family members and friends that I can count on one hand, there are very few people who really see me and even they don’t know the half of it. And maybe that is my own fault. Maybe I have been too guarded for too long, since my return from Sweden really, to actually let anyone in on any type of profound level. My need for control is astonishing. I didn’t used to be like that. Well, not to this degree, at least.

Mini really sees me. I think children have an incredible capacity to sense everything around them. Every time I leave her, I tell her again and again, “Mommy always comes back.” Last time I went to DC, she held my face with her little hands and said, “And maybe this doctor make you feel better, Mommy.” I hit my head a few weeks ago when I lost my balance and banged it on the kitchen island. I screamed. She came running and sat right next to me and said, “Okay, what can I do for you, Mommy?” And she sees me even when my invisible symptoms are at full force. Says my rock, “Maybe we cannot have music in da car today, Mommy, so it don’t hurt your head,” without me having said a word about my head being ready to explode. What would I do without this child?

And so, here I write to you in a very vulnerable state, because I am surrendering to some of the control that I have held onto for so many years. I am putting words to what has been invisible for so long. I am pleading with you to understand that I am not lazy. I am exhausted. Always. Physically, mentally, emotionally, and spiritually exhausted. My tank is empty. I have had it and although I will likely greet you with a smile, I am not okay.

Through my journey, I have learned that I am responsible for what I put out there and I have never had a problem taking accountability for my words or actions. And so, it is with shaky hands and great emotional discomfort that I let you in. I am letting you ALL in. Even those of you who I don’t know, because if I can help other people with invisible illnesses feel validated, then I have completed what I set out to do with this chapter. To those people: I know it’s not in your head. I know you are not making it up. I know you hurt. I know you cry aloud and within. And while I will never say I know how you feel, I will say I SEE YOU AND I CARE. To me, you are not invisible.