The Thing Lyme Steals: Heather’s Story

What is Lyme disease?

Lyme Disease is like a burglar that has broken into your house and robbed you except that instead of taking your jewelry it’s stolen your legs. And it doesn’t just break in once, no. It breaks in every week or every month and takes something else from you.

If you’re like me, you spend years not knowing who keeps breaking into your house and then you find out it’s Lyme disease and you think you’ve finally caught the culprit and you’re so relieved. You then call the police but the police don’t believe you and won’t come out to your house so you’re left waiting for it to break in again and steal something else.

And you’re powerless so you just watch as it walks away with something new.

Lyme Disease steals different things from different people but I imagine that we all share some things in common.

What has Lyme disease stolen from me?

Time: In one year I will have been sick for exactly half my life. I look back and I mourn for memories that I never made. Opportunities have come and gone and there was nothing I could do because I was too sick and too tired and too beaten down and too angry.

I didn’t take that trip. Or that job. And I didn’t pursue that dream because what was the point? I sometimes imagine what it will be like when I die and I desperately want to have these grand memories to reflect on but instead I fear it will be grey and not much fun to remember. My life has been safe, much to my dismay.

Peace: Anger is a big part of being sick. We are angry at our bodies. We are angry at our families. Angry at doctors, angry at God, angry at doctors playing god, angry at insurance companies, angry at empty bank accounts, angry at the disease and angry at ourselves. We hate that we aren’t stronger. We fear the future, will we have one? We are filled with worry and pain and we do a really good job of stuffing it deep down but make no mistake, we are angry. And frightened.

Dignity: I have sat in an ER and begged for help. I’ve pleaded for it, cried out in the darkest moments of despair for someone to just tell me what was happening to me. I wasn’t there for drugs – I’m allergic to almost all of them – and even after I told them that, I was treated like an off the street junkie looking for a fix. So I sat there in my little paper gown, cold and half-naked, bawling because what I wanted was answers and for someone to treat me like my life had value.

I’ve been to so many hospitals and had so many tests that I no longer feel shy. I’m not sure I feel much of anything anymore. I walk in, disrobe, stand where they tell me to stand, allow them to poke what they want to poke. I’m meat. That’s what they see. Not a person – just the next name on a list as they scan their way through their shifts. It doesn’t even bother me anymore to be less human. And it should, shouldn’t it?

Friendships: Nobody wants to be friends with the perpetually sick. They don’t understand that our bodies are no longer our own. We are at war on a daily basis. Getting out of bed some days is more than we are able to do. Don’t you think we would rather be out at the bar? Heading to the beach? Having dinner? Of course we would.

And we get that it’s hard to hang in there as a friend so we don’t get angry when the thief steals that away. We are sad but we let the friendships go because we know everyone is dealing with their own hardships. We know how hard it is to watch the people you care about constantly being robbed. We see it in the mirror every day.

And then one day you wake up and you realize that the thief has stolen everyone and it’s just you. Even the people that love you best are outside your empty house. Sometimes they want to come in but you keep the doors locked against them because you don’t want the thief stealing from them too.

Hope: Chronic Lyme is real but at some point the damage is irreversible. Chronic Lyme can’t be treated at all and the doctors who say they can are just selling snake oil. These are all things I’ve heard.

I want to believe I can be fixed. I need to believe it. Faith and hope are these integral parts to being human but the thief has just stuffed them in his black sack and is making his way out the window. And I don’t want to live this way.

Ask someone who is facing a prolonged battle against an intractable disease if they believe that compassionate suicide is wrong. Most will probably still say ‘yes, it’s wrong’ because it goes against religion or because it’s the answer we feel compelled to give but make no mistake, we think about it.

You keep finding reasons to keep going until the day the burglar takes that last precious thing from you and you just give up.

I used to be an artist until my hands started hurting so badly that I had to stop – but…I still had my singing. I loved to sing. It was the one place I “stopped” hurting – it healed my soul. Then, one day, I noticed my voice getting tired when I sang. At first, it recovered in a few hours. Then it was a day. Now, I can’t have a phone conversation for more than ten minutes without losing my voice for a week. It was stolen from me – that last place of hope.

It seems silly, maybe, that something so simple is the most painful thing to lose. But when you are constantly sick, that small thing may be all that’s left.

Independence: My heart doesn’t work like it’s supposed to anymore and my legs sometimes stop moving the way I think they should. So I have a wheelchair. I also have a walker and a cane. But I don’t know what kind of day it is going to be when I first wake up and so my husband drops me off at the door of wherever it is that we wanted to go that day while he goes to find a parking spot. This one trip to something as simple as a store is something I’ve been planning all week. It’s my chance to feel normal. But we didn’t bring the wheelchair today – we only brought the cane. And ten minutes later my day is over and we are heading home while I cry and he tells me it’s okay – he didn’t want to go to that movie after all. So he takes me home and puts me in bed and the thief has not only stolen my day, but my husband’s.

My Future: I’m 35. There won’t be any children in my future – which most of the time I’m okay with. But some days it hurts. Some days I imagine a little girl that I will never hold.

I think ahead to if I get old, what will my life be like? Will I be bed bound? Will someone take care of me? I think not.

So, I write. Not to become famous and not because it’s much good but so that possibly someday, far in the future, I will have achieved my own immortality in the form of some muted book held more together by dust than glue. Hah! Kind of like my body.

And these are only some of what Lyme disease has stolen from me. It’s taken away a lot of my faith in people. I don’t trust that doctors know what they are doing, that insurance companies want you to get better, or that our government cares about the individual. I don’t trust my friends to understand – even those that care enough to try. I don’t trust myself to be strong enough – physically or emotionally.

These things aren’t exclusive to Lyme. The chronically ill have all met this thief, regardless of their diagnosis. And I wish I could catch him and make him give it all back. And I’m sorry that you know what I’m talking about. And I love you for all the things you can’t do because I know that even the smallest thing you did today was an incredible achievement and you should have had a personal cheerleader that was there to celebrate it with you.

But you don’t have that. The only ones who understand are the ones who have faced this thief. Still I have hope that there will be a day when we can recover what was stolen from us and we can stand together and cheer.