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How To Save A Life

I thought I’d put it behind me. Not for good—I’ll always advocate for those with Lyme Disease and do whatever I can to spread awareness and education—but I thought I’d moved on, that it was a thing of the past, that it was something I could say I survived and now I was ready to live my life.

Another chapter. A different story. The life that this disease stole from me was right there, for the taking.

But there is no separation. Just like I can’t separate myself from this illness, I can’t separate living my life with having a voice connected to the Lyme community.

I say community like it’s some kind of club, but it’s not one you ever want to be a part of. Because this community is made up of thousands upon thousands of people suffering every day. Some of them know why—they have their answers after dozens of doctors' visits and tests.

Some of them don’t.

This disease is relentless. It has no end--just cycles of feeling good until you don't anymore.

I fully understand why it's so easy to deny this disease, especially when there's so much misinformation out there by the people who are supposed to be helping us. It's why this disease has become so political in nature, why there's this so-called "war" between patients and doctors when patients should have only one battle to fight--that against this illness. I've lived with this disease, I fought that battle--I thought I won.

But it's not just one battle.

When you have Lyme Disease and its co-infections, you're fighting a war--just you and the bacteria, with your body as the battleground.

I'm tired of fighting.

Which is why, after fifteen years of being misdiagnosed, two and a half years of hell in treatment, and six months in remission, I chose to ignore the familiar pain that snuck back into my joints, the fatigue that fell in waves across my mind and made my body feel weak, the tingling in my fingers that's a sign of neuropathy, and the headaches that crawled up the back of my head. I made excuse after excuse and tried to find ways to manage these symptoms: holistic remedies and essential oils, methods of detoxing and changing my diet, walking the dogs when even small bits of exercise tired me out.

It was all just padding--a Band-Aid on a much larger problem that I didn't want to admit.

I cried nearly every day when I was sick with Lyme Disease, feeling guilty because I couldn't go into work and be there to help my colleagues and do my job (much less walk or stay lucid enough to focus on a computer screen, I still try to remind myself). I pushed myself to get better, even though I knew how fragile my health had become, and when I went into remission, I constantly feared I would always be two steps away from a relapse.

I didn't take care of myself then. But I was taking care of myself now.

Resigning from my corporate finance job was a long time coming, as increased pressure, unabated stress, and feeling undervalued despite my dedication to the job threw me into a depression--one in which I wondered if I would ever find my way back out. Being sick for so long didn't help with those coping abilities, but it was being sick for so long that helped me learn the lesson that I think has been shadowing me my entire life:

A drowning man will pull you under in an effort to save himself.

To keep yourself from drowning with him, you have to save yourself first.

I was in a position where my job had begun to affect every other aspect of my life, and suddenly small problems that normally would be only a nuisance became insurmountable obstacles that I could no longer cope with (hello, frozen pipes in the middle of winter!). I didn't expect to make the decision when I did. I wanted to wait until I had something lined up, until I knew what my next step would be.

But life doesn't always come neatly packaged like that, and even though I had tried taking steps back towards happiness and back towards myself--by writing every day, working part-time at a vintage bookstore, taking a writing class--it was like there was this blockage, and nothing else-- nothing good--could come through.

I hit rock bottom. And then, I tunneled through rock bottom and hit rock bottom again.

Something had to give. So I made the decision to resign, and as soon as I did--as soon as I decided to be kind and compassionate towards myself, first and foremost--it felt like the world opened back up to me.

The relief I felt was indescribable, and I began looking at the world possibility could thrive again. And it did. I gave my employer a month, and then I said goodbye. While I signed up to supplement my income through a temp agency, I waited to take on any assignments, learning (the hard way) that I needed to take the time to separate myself from my last job and whatever work I was going into next. I was so stressed and burned out, caught on the verge of a relapse, that I didn't think I could manage taking care of myself, let alone a new job. So, I picked up more hours at the bookstore where I'd been working Saturdays, I finished writing my second book, I spent my days recovering and discovering myself again--walking the dogs and watching them play in the yard as the season grew unseasonably warm, and napping by choice, not by need, and reading books for pleasure again--able to focus and slide effortlessly into fantastic new worlds once again. As the weeks passed, I felt my soul expand. There's no other word for it.

Here was Susan again. I was healthy. I was happy. I was doing everything I loved and becoming more me because of it. I was giving myself the time to recover not just physically, but mentally and emotionally--time I'd never given myself at the height of this illness.

I know that we live in a society that doesn't take kindly to just up and quitting a comfortable job like that--not in this climate, not when it's hard just to get by. And it certainly doesn't let you get better when you're ill. We don't live in a world where we can explore our interests and find our happiness and start over, no matter how necessary to a person's well-being it is.

We sacrifice. We do the job. We pay our dues.

I get that. Which is why I felt so conflicted between genuinely liking (most of) the work and the people I was with and feeling a desperate sense of self-preservation and a knowledge that I never belonged there, anyway. That inner conflict led to a sense of selfishness--other people make sacrifices, other people feel stress and do jobs that aren't fulfilling. Who was I to ask for anything different out of life?

The truth is, I'm nobody. Not in the grand scheme of things.

But I'm somebody, too.

Somebody who just wants to live the best life she can, someone who wants to feel like she's making a difference, no matter how small that difference is. Someone who made a choice to let her soul breathe again, who began to believe that her health--her very self--was worth it.

I wasn't afraid then, when I quit that corporate job. I knew I would be taken care of, and I was. I found new sources of income in clients and the bookstore, and I found my way back to health and to myself.

But then, after a month, I was asked to go back to a portion of the job I'd just left, to fill in for five weeks during the summer rush.

I went.

Truthfully, it was what I needed--a means of earning back some lost income and the structure necessary to return to the 9-5 working world for future temp assignments. But that stress crept back up quickly, and suddenly I found myself fighting every day--fighting for the ability to focus when I was so exhausted by the end of the day, fighting for the time to decompress and write--my only emotional outlet, fighting for my weekends when I needed two whole days to recover because familiar symptoms were slowly starting to edge their way back in.

Now, in this one week between ending that job and starting a new one, I finally have to accept what I've been fighting for months:

I've relapsed. ​

I'm back on the meds, back to taking all those supplements--a dozen and more bottles that fill my bread drawer--and back to monthly visits to my doctor upstate.

This time, though, I vow it's going to be different. Because I'm different.

This time--although it's taken a damn long time--I've learned my lesson.

​​These past few days, I sank into a mild depression knowing just what this relapse will mean. For months, just the thought of being in remission fueled me forward--motivating me further along in my dreams than ever before. I knew what I was working for, and I finally had the energy to get there. I thought, I finally have my life on track as I pursue these dreams. I thought, I can finally show the world what I'm capable of. I thought, now I can live the life I always wanted--I can be healthy, too!

No more pain! No more naps unless I want them! No more limits!

But this disease creates limits, where everything becomes a choice. I could mow the lawn or clean my house. I could do the dishes or cook dinner. I could write or visit with my family. I can never do both. Not when you're running on empty, anyway, and you have to decide how to use that last bit of gas that's reserved for emergencies--just enough to get you to safety on the side of the road.

It sucks. There's no way around it. This disease sucks the life right out of you, and it's hard to accept that I'm back here again, and I've cried and gotten angry at how frustrating it is to have a glimpse of something you long for, only to have it taken away from you again.

Only, I'm not back there again--where I was all those months and years ago. That's the difference.

Because while this disease has no end, neither does my strength and spirit.

I'm not giving up.

My family and friends encouraged me to feel what I needed to feel--to feel bad for myself and get pissed off at this illness and shout swear words at the universe and then thank my lucky stars that I'm stronger now than I was back then, when I didn't know what I was facing.

I know what I'm facing now. I know that I got through it before; I know that I have to do it again. And I'm going to carry that with me and keep fighting--for myself, and always for others.

And while I'm not happy about it, this relapse, I know to treat myself more kindly, more compassionately, and to acknowledge both the good days and the bad.

This is my life now, for better or for worse. But the thing is--despite this disease, or maybe in spite of it--it's a great life.

I won't ever give up on it.

I promise.

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