January 22, 2015

10 Life Lessons Learned From a Chronic Illness.

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I remember the day I knew that something had gone seriously wrong inside my body.

I was in the shower, and when I bent my legs to scrub my foot, I couldn’t.

I had no idea what it was, only that it was not normal. I could only describe the sensation in my knee and at the back of my right ankle as an acute, uncomfortable tightness. I knew that if I insisted on bending, something in my joints would snap.

I was 19 years old, and from there it was just a downward spiral. To make a long story short, I was diagnosed some four years later with Ankylosing Spondylitis, a medical term I’d never even come across despite my years of reading health articles.

It is, in layman’s terms, incurable arthritis of the spine—a relatively rare disease that is three times more common in men and is seen much more in Caucasians than in Asians. I am female and about as Asian as you can get…go figure.

By then it wasn’t just my foot and my knee that were affected. It was also my neck, arms, hips, collarbones, back, and joints I didn’t even know existed until I could no longer move them. Sometimes the mere effort of taking a shower exhausted me so much I would collapse in a heap on my bed and not get up until three hours later.

I was experiencing relentless, debilitating pain 24/7—pain so intense it still boggles me how I survived it. Pain I wouldn’t wish on my worst enemy. In the acute stages of the disease, which lasted many months, I never had a good night’s sleep; I would lay in bed crouched in a fetal position, my entire body contracted from trying to resist the pain, my breathing extremely shallow.

I did not even have the energy to talk.

Thankfully, the worst of it is over. I still have pain every day, but I sleep much better now and even though my life is not entirely normal yet, I am at least functional. As long as I keep to a relatively healthy diet and get regular rests throughout the day, I am fine. I limp, but I used to have to travel in a wheelchair, so even though it’s sometimes awkward and embarrassing, I don’t sweat about it.

Looking back now, I realize that living with a long-term physical ailment taught me very much. About life. Happiness. Resilience. I am an entirely different person now than before the illness, and I like the present Me much better. Here I share the most important lessons I have learned:

1) Self-care.

In the past, “working hard” for me meant working my fingers to the bone and going to bed absolutely spent, with not a drop of energy left. If I went to bed before that point, I labeled it being lazy. When I became ill, I slept 20 hours some days, getting up only to shower and eat. It taught me to listen to my body.

My back has become a sort of alarm clock for me, going off when I’ve sat for too long on my work desk. When it starts to get sore, I know I have to stop whatever I am doing and lie down for 20 minutes before resuming. If I force myself to continue working, the alarm just gets louder and louder until I become hunched over in pain, and then it takes so much longer to recover.

2) Acceptance.

I have always been driven and self-motivated. I was always actively pursuing something. To someone like me, falling ill was a very severe blow. More than the physical pain, it was my physical limitations that were the hardest for me to accept. But I had to, for my own peace of mind. I had to come to terms with the fact that at 19, illness knocked…no, barged through my door and my life was changed forever; and that I may have to live with pain and some degree of physical limitation for the rest of my life.

3) Do not compare.

Do not compare your life to others’ because it is pointless. There will always be someone more accomplished, more intelligent, more everything. I learned that everyone is born with a unique set of gifts and whether or not I am using my gifts and being truly myself is a far better barometer of my life than what tangible worldly accomplishments I have amassed. And who is to say what “accomplishment” means? Everyone should define what the word “success” means to them and bravely pursue that.

4) Be positive.

Having gone through depression before, I knew that the mind is a very powerful thing. I knew that I had two choices: I could either lament how I was in so much unbelievable pain and how I could no longer lift a bottle of water with my hand; or I could look at the bright side and celebrate the fact that my mind was still strong, my family loved and took care of me, I could still type and write, etc., etc. Yes, I had bad days. Lots of them. But in moments of utter helplessness I just allowed myself to cry, and like raindrops catching and carrying dust down to the ground, the tears carried the feelings of helplessness out and away from my body, leaving me feeling lighter afterwards.

5) Surrender.

I used to be a control freak. I micromanaged my life. I had to take care of every minute detail and be certain what the future held. Ankylosing Spondylitis yanked me by my ankles, hung me upside down, and gave me a good, hard shake. And boy was it effective. I have since learned to trust more in the mysterious orchestrations of the Universe (or God). I am more at peace with not knowing, because there really is no way to know everything. I try to look at it this way: When you don’t know what’s going to happen, then anything is possible, which means that things could turn out far better than you imagined.

6) Live life fully.

Freedom is most delicious when you’ve experienced confinement, as water is most satisfying when you’re thirsty. I’ve never felt more drive to live as fully as I can than after I experienced physical disability. I suddenly began to love exercise. Movement felt awesome! I wanted to travel, see new places and meet new faces. I wanted fresh experiences. I craved new flavors. I wanted to grow, in all the beautiful ways I could grow—physically, mentally, spiritually. I’d always wanted these things, but the desire was intensified tenfold.

7) Don’t take things for granted.

That very first time I was able to walk without a crutch from one end of the hallway in our house to the other, I didn’t even have the words for the feeling that surged through me: a mixture of euphoria, extreme gratefulness, celebration, and triumph. It’s cliché but it’s true, we often don’t know what we have until they’re gone. After being sick, I never took for granted again that I was able to walk or cook or get up from bed on my own. And that appreciation spilled over into other parts of my life.

8) Discern what’s really important.

Because I have pain and because I have limited energy, saying no to what is not important is not an option; it’s a necessity. My physical condition has been instrumental in sharpening my focus as to what truly matters. Family matters. Real friendships matter. Self-care matters. Doing good work matters. Attitude matters.

9) You’re stronger than you think.

Someone once asked me to rate my pain. I said it felt like my bones were being repeatedly, mercilessly hit with a baseball bat. As I’ve said, I didn’t know how I survived. But I did. We’re stronger than we think, more resilient than we give ourselves credit for. During a challenge or even when defeat is staring us in the face, we just muster everything we’ve got, push on, and have faith that “this too shall pass.”

10) Laugh.

You always hear “Don’t take life too seriously.” I feel like that advice is meant especially for me because I was born a very serious kid. This illness, ironically, was what taught me to have a certain lightheartedness about life. Humor was a way for me to stay sane during my most difficult moments. I laugh very easily now and while I still actively pursue my goals, the setbacks I experience along the way are less devastating, less a life-and-death matter. I see them more as part of the natural ebb and flow of life.

Ankylosing Spondylitis might have slowed me down physically, but in other more profound ways, it catapulted me towards deep, inner growth that would have taken me years, perhaps decades, to access had I lived a so-called “normal” life. So ultimately, however difficult it was and still is, it has been a blessing.