People complain to me that they lack motivation and sometimes ask me for advice on staying motivated.
It’s very simple: just remember what you want, why you want it, have hope for the future, and have enough and faith in yourself to patiently take one day at a time.
That sounds great, but let’s put it in the context of my reality. I hate every aspect of my life; this hatred is strong enough to drive me to keep trying to change. Day after cruel day. Unrelenting physical pain is at war with emotional pain. Lopsided physical strength teams up with dwindling emotional strength in a desperate attempt to instigate change.
Here, in no particular order, are some of the things that continually motivate me to fight to improve my life.
- I don’t want to get out of bed in the morning. I’m groggy. I hurt. I can’t move. I long for the times when sleep was simply a physical necessity, the times when I couldn’t wait to start my day and leave the house because I had things to do.
- Florida. Central Florida. With its giant bugs, giant frogs, and giant birds. Year-round allergies. Unrelenting humidity. Every benadryl, every very bad hair day with nowhere to go, every cuban tree frog that jumps out of the ether, every sandhill crane that stands in the road in a showdown with cars traveling 50 mph, every enormous hairy poisonous caterpillar. They all remind me how badly I want to leave this God-forsaken wasteland.
- Roller coasters. I love roller coasters. A friend of mine casually told me about taking his family to Universal. It sounded fun. I imagined going there. My heart sank as I realized I might possibly never go to an amusement park again. Let’s pretend for a second that I could walk around and stand in lines all day. The rides themselves would cause my leg to flare. The vibrations, having my leg bent at the knee, being jostled around… It’s just not possible. For now…
- The misery of finishing an hour long “winter” swim, crawling out of the pool, and having to sit in 55 degree, raining weather, waiting for my leg to stop shaking so that I can walk and leave the facility.
- Living with my parents while they demo and reno their master bathroom. I’m not going to expand on this one. You can use your imagination. I love my parents very much and there are no words to appropriately express my gratitude for all they’ve done and continue to do for me. However, prior to this nightmare, I lived alone for many, many years, and over two decades away from my parents’ home. It would be nice to visit them again, even if it was very often from a different house in the same neighborhood.
- The humiliation of people’s sympathy. I’m tired of being that tragic girl with the sad story. I’m tired of people telling me in unassured or saccharine tones how strong I am and how things will get better. I’m tired of the furrowed brows when people ask how I am. I’m tired of people knowing how I am before they ask. I have CRPS… I want to have a happy, secure, normalish, non-sympathy evoking life despite CRPS.
- Dancing. Of course, dancing. I hate that I can’t dance six days a week anymore. I have fought my body for almost three years and I took one class. It took a week to recover, and it was the most basic level, but I did it. Sort of. I want more. I want to improve. I want my leg to work properly so that I can dance regularly again.
- Work. I miss being self-sufficient. I miss having the sense of self worth that comes with being able to answer the question “what do you *do*?” because that question really means “who are you?” I want to be more than CRPS, I want to do more than treat and try to overcome it, even though it has completely consumed my life.
- Loneliness. I have friends, and I am slowly making new friends through swimming at the YMCA. But, my face-to-face interactions are short and most of my time is spent at home, alone. I text or email my far away friends, and speak to a small number on the phone. This is a reminder of how distant my old life is. I would love to meet up for cocktails or coffee, go to a movie, wander around town laughing, losing track of time with a close friend.
I kind of feel like I should have a more upbeat, positive message for motivation, but this is the truth. My life as it is now is wholly unacceptable, and that is what motivates me at 7:35 every morning when my alarm goes off after another night of sleeping poorly. It is what motivates me to get out of bed, and face another lonely day of therapy for my leg. It is what motivates me to swim six days a week. I remember that the pool at the Columbus Circle Equinox never had frogs. I remember screaming with joy on roller coasters. I remember the happy exhaustion after dancing ballet for four and a half hours. I remember never having to question whether my leg was going to hold me up. I remember never saying “I can’t.” I remember these things and I want them again and I will do everything in my power to try to regain them. So, as much as I don’t want to get up and try again another day, I want to have my life back infinitely more.
So there you have it. Motivation.