I Have a Chronic Pain Syndrome Dubbed the 'Suicide Disease'—Here's How I've Learned to Embrace Life
This story is part of Health’s #RealLifeStrong series, where we are celebrating women who represent strength, resilience, and grace.
I grew up in a small town in Texas, in a big family with lots of tough love. Sayings like “Suck it up,” “Get 'er done!” and “Hide your crazy and be a lady” were my mottos. My outlet for any kind of pain growing up—whether from my parents’ divorce or my stepfather’s sexual abuse—was to do something productive. I got good grades. I ran track. I danced.
Feeling at an early age that you can rely only on yourself is sad. But if you take away the self-pity, what you’re left with is a liberating sense of freedom: When trauma strikes, you don’t waste time looking for someone to bail you out.
In May 2010, I was at the height of my fitness career. My youngest daughter had just turned 2, and for the first time since her birth, I was making workout videos again. One afternoon on my way home to my family in Woodland Hills, California—after training five clients and squeezing in a run that set my new personal best time—an SUV struck my motorcycle. I was thrown 30 feet down busy Ventura Boulevard. My right leg was shattered, and my femoral artery severed.
When I woke up from a coma, I was told my leg would likely need to be amputated.
It just goes to show you that life can change in a moment. Your fate, your destiny, your future can be transformed in the snap of a finger.
For the next three and a half months, I stayed in the hospital, holding out hope that doctors could save my leg. Yet in between surgeries number 28 and 34, I spiraled into a deep depression. I could feel myself giving up and giving in to the pain. I thought about my family and friends, and realized it was time to make a decision: go down the road of despair, or choose a different path.
I chose the latter. From that point on, every time a negative thought crept into my mind, I replaced it with something I was grateful for. Instead of focusing on what I couldn’t do, I focused on what was right in front of me.
“Start where you are, use what you have, do what you can” became my new motto.
Doctors were able to fuse my leg together and repair my artery enough to save my leg. But once I was out of the hospital and able to stand upright on crutches, I was hit with more bad news. Tests showed that I had a nerve disease called Chronic Regional Pain Syndrome, nicknamed the “suicide disease,” because the intense pain has led people to take their own lives. CRPS would be with me every minute of every day for the rest of my life.
I wasn’t scared of torn ligaments and broken bones. To me, they were like dealing with a hangnail. But nerve pain is the worst kind of pain.
To try to avoid it, I became an easy mark for every charlatan snake-oil salesman out there. I spent money and time on a spinal stimulator, spinal blocks, spinal radio frequency, acupuncture, acupressure, microcurrent treatment, ketamine infusions, chiropractic, homeopathic medicine, narcotics, chakra balancing, meditation, and aura cleaning.
It sounds crazy, but when you feel like your foot is in a vice grip and you want to scream uncle, you become desperate.
I wish I’d found some magic pill to relieve my pain. I didn’t.
It wasn’t until six years later that I finally accepted the fact that I’m a woman with a disability, and pain is my “new normal.” Once I began to show myself some compassion, I began to feel better—and not just physically but emotionally and spiritually.
I started to view my scars as battles I’d won. Instead of looking down at my leg in anguish, I looked at it as a blessing: Hey, I still had my leg.
CRPS is a baffling disease. What triggers a flare-up of pain can change. What stops the pain some days doesn’t always work the next. I resolved to just keep trying and doing.
I practice mindfulness. I surround myself with positive people. I give myself permission to rest when I need to. I eat an anti-inflammatory diet. I (try to) get enough sleep. I breathe deep breaths. I pray. I don’t get caught up in past accomplishments. Instead, I celebrate small victories, even walking up the stairs of my house on my own.
I don’t know if it’s just me being stubborn or my love of a good challenge, but although my body’s “broken” on the outside, on the inside, I’m still a determined athlete. Today, I can race my daughter, although she always wins. I work out every day. Although I can’t run the way I used to, I hike and swim. I even learned how to belly dance.
I define strength as being scared but moving forward anyway. Sometimes that means going to the gym and lifting weights in the back room with all the biggest men. Other times, it’s making it through the day with a smile on your face.
As someone once told me, “You’ve got a shovel in your hand. You can either lean on it and pray for a hole, or you can start digging.” Well, I do a lot of praying and a whole lot of digging deep.
Amberly Lago's memoir, True Grit and Grace ($17, amazon.com), is out this week.