Some people have said to me "I don't understand why you're getting surgery" or variations thereof. (which I find so odd considering how many other people wonder why I've waited so long). They see me walking around okay (I walk a little funny because my left quadriceps is in pain and my left foot is numb) and think that I'm being rash in opting for surgery. Or they see me playing softball and think that if I gave up softball that I wouldn't need the surgery.
Okay let's break this down...
Trust me -- I'm in pain.
Okay let's break this down...
- When you live with chronic pain/illness, your relationship with pain changes. In the past a 4 on the 1-10 pain scale might land you in bed. Now, a 4 might be a good day. Expectations shift. You choose where to expend your energy and pain tolerance. So while I may not look like I am in pain, chances are I'm in pain. I am just better at dealing with it some days than others. Most spine ortho docs use the Oswestry Disability Index as a measurement of how back pain affects a patient's life -- and you'll see it doesn't take into account many aspects of life. I don't like being disabled by my pain and even if I'm walking, I'm still disabled. (I'm still in the "severe disability" category.) I will never have an ODI of a normal person (5-15), but an improvement of 10+ points is a good surgical result. And you bet your butt that I will do everything possible to make that happen. (See this study abstract that while the physical pain didn't reach the levels of the general population, the mental aspects returned to normal.)
- I'm the only one that lives in my body and I don't need to defend my decisions to anyone (some people are well-intentioned, some are not, either way I'm really over it). But I've been living with this issue for 20 years. I've seen the injury and my ability to work around it change over the years. And right now, I'm just physically and emotionally exhausted.
- My doctor and I agree that this is the right time to have the surgery. We've been waiting for the intersection of technology and my physical health/readiness. We were hopeful that new technologies would come out in the past 10 years and get FDA approval. Sadly they haven't. In the meantime, the degeneration and deterioration of my back continues. I don't want to wait too long and have irreversible nerve damage.
- I've told people about my surgery because in some way it affects his or her life -- either a coworker who may have to fill in, or a friend that I may need to lean on. I'm really not asking for opinions on my life choices. I've really come to appreciate the people in my life who may not understand but still show up.
- There are things I can do to minimize my pain (ice!) and things I can do to minimize damage (like not running), but there is nothing that I can do to reverse the damage. We knew the trajectory of this injury -- the only question was when would I need surgery, not if. My doctors emphasized early on to listen to my body and manage my own risk. I gave up many things in order to do others. Those moments when I get to use my body versus just lying in bed every day have helped keep me afloat.
- I remember what it was like for my mom to be living in constant pain. She didn't have the benefit of early intervention. I asked my dad to write down his recollections of my mom's injury and he said that by the time she had MRIs (in 1989 -- she would have been 39), she had 3 herniated discs in her neck and 3 herniated discs in her lower back.
What I remember was a little different. I remember mom waking up in pain and instead of wanting coffee, wanted an inch of rum in a mug, a teaspoon of sugar, 4 oz of water tossed in the microwave for a minute. I remember all the ways she leaned on me to do the things she couldn't do. I also saw how my mom would focus on the things that made her happy (photography) and let some of the things that didn't make her happy (cleaning) go.
I also remember thinking after my mom died that at least she didn't have to endure the back pain anymore.
I realized while writing this that part of it wasn't about people saying "why are you having surgery" -- it was an exercise in reminding myself about all the reasons why I'm taking a leap of faith.