A Mile in Her Shoes

We've all heard versions of this proverb throughout our lives.  It is meant to say that empathy/sympathy should precede judgment.

Well, today I got this email:

Hi Robby,

I hate to be an ass, but I have come to terms with it over the years.
I followed you through [name redacted] over the past few months. I know you are going through some physical pain right now, but your tweets have really started to piss me off.

I hate the heat. I hate to sweat, which I do, profusely. Complaining about the weather doesn't change the fact that I sweat. Complaining about your back woes does nothing to change the fact that it hurts and isn't getting better. I am unfollowing you because man, your guy problems, cats, and shaving issues do nothing to enrich my life.  Good luck with your shingles and carple[sic] tunnel syndrome. From the way you are talking, they are sure to come next.  

A former fan,
[name redacted]

Whoa and hey now! I bet it made this person feel all big and important to write that email, but if someone doesn't want to read my blog or be an acquaintance, that's their choice.  I won't force anyone to read my blog or follow my tweets. 

However, I didn't know it was my job to enrich her life.  My mission statement has never been to help other people (that just seems to happen coincidentally as a result of my helping myself).  It has all about how I take on (1) the world and (2) people's perceptions of fat people as I "struggle for [my] body."

My back has been the biggest struggle on this journey.


To be perfectly clear, this is not a "take an aspirin, use a heating pad" kind of back problem.  I have degenerative disc disease ("DDD").  I have three confirmed bulging discs with annular tears [[in my lower back]].  They have not herniated, but they most likely will at some point  At that point I will require a multi-level (3 at the least) spinal fusion.  It will greatly limit my mobility and flexibility, and there's no guarantee that it will help with the pain.  This most recent neck thing might be another disc showing signs of breakdown.  I feel pain and numbness radiating down my neck, through my left shoulder and down my left arm. [Update--it was a herniated disc and another bulging disc.  Yay!!]

The easiest way to explain DDD is that my spine doesn't look like the spine of a healthy 29 year old [[now 33 year old]].  My spinal specialist (a spinal microsurgeon) [[I now go to a different doctor]] said it has more in common with that of someone who is 50-60.   DDD is genetic (my mother had 6 herniated discs-- 3 in her neck, 3 in her back; tendonitis and arthritis.  She dealt with it not through rehab or medication, but by drinking).  It's not just because I'm overweight (losing 50lbs helps a little, but does not cure my back).  I could have gone many years without experiencing symptoms, however I've experienced two traumas to my back that have exacerbated my DDD:   in 1997 a linebacker bodychecked me into a wall and in 2007 a concert goer pulled me to the ground and 7 people landed on me.  [[And in 2011, a boyfriend damn near broke my neck by being haphazardly playful.]]

But the name of the post is "walk a mile in her shoes" -- and as there is no Spoon Theory for back pain that I've seen here goes:

It hurts to do just about everything.

What we know:  I have 3 bulging discs in my lower back (L3-4, L4-5, L5-S1). [[An artificial disc at C5-6 and a bulge in C6-7]
 
Imagine your vertebra are bricks and instead of mortar between them, they have jelly doughnuts between them.  The doughnut normally lines up right underneath the brick.  A bulge is when the brick exerts pressure on the doughnut in such a way that the doughnut is pushed beyond the boundary of the brick.  In my case, the discs are pushed dorsally (i.e. away from my core, and toward the outside of my back). Herniation is when the jelly is pushed outside the doughnut and into your body and the pastry is flattened, thus providing no cushioning between the bricks.  I'm not quite there yet [[in my lower back]], but there are cracks in my jelly doughnuts. 



http://www.empower-physicaltherapy.com/

Each of those discs/doughnuts have annular tears.  This means that not only are the walls of the discs (the annulus) misshapen and pressing on nerves they shouldn't, but the actual discs are breaking down and are prone to herniation (and having the nucleus pulposus/jelly squish out). The actual discs relay feelings of pain to my spine and then brain.

How this expresses itself is that I often lose feeling in my [[left]] leg[s] (sciatic nerve is a bitch) and sometimes that means I stumble/fall. Also, the actual discs can become inflamed and feel pain.  When the discs are inflamed, it hurts to even touch my back/neck (which is why I (sadly) cannot get massages).   Any type of exercise with torque/twisting or compression (jumping) is not advised.  Planks and pushups are hard because my stomach/back muscles aren't strong in the way they need to be, and the exercises that will make them strong usually put pressure on those discs.

I also have tendonitis in both hip joints (further adding instability to my core), but it is worse on my left side.  If you're ever around me, I'll pop my hip for you.  It's a gross party trick.   It makes exercises like leg lifts or scissor kicks very painful.

[[We now know... ]] Like I said above, we're not sure what's causing the cervical radiculitis, but it could be another disc issue (degeneration/bulge), but in my cervical spine. (Thoracic spinal injuries are more rare as there isn't much movement in that part of your spine, but it's not impossible, especially through trauma to the area).  How this expresses itself is that I can't really turn my neck to the left, and there is pain/numbness radiating down my left shoulder/arm. I have a limited range of movement in that arm, and I can't carry heavy things.

Each basic task of caring for yourself (god forbid you have to care for other people!) is broken down into its component and painful parts:

Going the bathroom was the hardest:  pulling down underwear, trying to sit down, twisting to reach toilet paper, bending to get up, and trying to get dressed.  There were times I was worried I'd be stranded in a bathroom unable to get up.  I found myself using the handicapped bathroom just so there was a bar I could use to pull myself up.   Often I urinated on myself when sneezing because when I sneezed the nerves that controlled my bladder were compressed.  Same goes for laughing.  I started keeping extra underwear and pants at work because of this.

Showering wasn't any easier -- I could basically clean the front of my torso, arms, neck, and face.  Everything else hurt in one way or another because of bending or twisting.  Shaving my legs was damn near impossible even on a good day.  On a few occasions I almost bit it in the shower because I was trying to shave my legs.   I couldn't even shave while sitting in the tub.  I just couldn't bend that way.

I couldn't sleep because almost every sleeping position was painful.  With pillows.  Without pillows.  With the ramp.  Without the ramp.  After a hot shower.  After icing.   With or without my knees tucked in a child's pose.  Thanks to narcotics, I'd average 3-4 hours of sleep a night.  But even that sleep wasn't enough and on top of being in pain I was irritable and exhausted.  [[And many times I find myself having to pull myself (with my arms) upright, because it hurts too much to twist my core.]]

Getting dressed was always an adventure as to how I'd have to figure out how to put on underwear, pants, socks, shoes, etc.  

I had two chairs at work because it hurt to sit in one position for too long.  The Nada Chair was one of my saving graces -- not just because I could stick an icepack between myself and the fabric, but because it helped me sit for more than 10 minutes at a time.

Cooking fell by the wayside for a few reasons -- mainly because I couldn't carry more than a few groceries at a time [[and I don't have a car]], the medications or the pain made me nauseated, and/or prepping food/cooking it was another instance of bending at the kitchen counter.  My diet was about what was easiest.  

Forget about taking care of my apartment--washing dishes was (and continues to be) painful, bent over a deep sink for even 5 minutes can make my leg go numb.  Each box of cat litter was 21-35 lbs of weight that I had to figure out how to carry (sometimes friends would help, but I'd still have to figure out how to get it in the litter box).  Laundry?  Ugh.  Vacuuming? Dusting?  All challenges I had to figure out.

Et cetera and so on.  Okay, so life wasn't as easy as it used to be.  So I won't be able to do the thing I used to be able to do and/or the things I wish I could do.  To a certain degree I can/could handle that.  I am strong, I am young.  I have a high pain tolerance and a positive attitude.  What became even harder than having a back problem was how people reacted to me saying I had a back problem.  So many people would be like "have you tried this drug?"  "A heating pad?" "this stretch" "that exercise" -- it was really hard to explain to people that this wasn't a sore muscle, this was a spine injury and it caused nerve pain.

It's not like I'm disabled in a wheelchair, or missing a limb.  It's not an obvious thing.  I could be sitting in front of you and you'd never know just how much pain it is for me to sit there.  I might bitch and complain on my blog, or on Facebook/Twitter, but it doesn't mean I've given up or given in to my injury.

For all intents and purposes, the amount that I complain about my back is minimal in comparison to each and every day I've had to live with this.  Even I feel guilty.  Before that snarky email arrived, I had posted to my Google+:

I really hate complaining when i know there are worse tragedies and misery in the world. that being said, i really hate being in pain (neck/shoulder), unable to exercise (boxing or gym), and basically stuck in bed (the pain meds make me sleepy/woozy). i just want a body that cooperates with me instead of constantly working against me for the past few years. i mean , my brain finally got the message regarding exercise and diet... I'd like to keep up that momentum without having to deal with injuries. /end rant

My friend JD reminded me that it is okay to complain/vent:  

JD:  Never make your misery relative. It sucks you gotta go through all this crap :(

Me: Well i feel it is relative. i know that for me to complain that something is really wrong. at the same time i think about soldiers in recovery/rehab at walter reed. i think about people in third world countries walking around dying from treatable diseases. i feel like my pain is so minor in this world, and that i have the benefit of doctors and medicine... and yet, i feel absolutely miserable.

JD:  That still does not negate what your going through. Everybody needs to vent. Everybody is entitled to feel like shit once in a while. 

Me:  It's the proximity we have to our own pain that makes it feel insurmountable sometimes.

And it does feel insurmountable sometimes.  I do read your blog entries and tweets about running races or great workouts with a pang of jealousy.   I am not jealous of you, per se, but I'm frustrated that when I finally started to understand how much I loved exercise that the ability to do it freely was taken from me.  I want to be part of your 5k herd. I want to do each and every rep at the gym with you.  I want to Zumba my little ass off.  But the truth of the matter is that my desire to do such things is not what dictates my ability to do so.

One of the things about DDD is the awareness that even the most innocuous of movements can cause irreparable damage.  For example, if I were in a yoga pose, and were to fall over, I might cause a disc to herniate, or a new disc bulge.   Does it prevent me from living?  No, but I'm cautious about which activities I engage in, and very mindful about the condition of my back.  On a good day I might be healthy enough to box.  On a bad day, getting out of bed might be inadvisable.

So there's the mental aspects of feeling restricted by my body and older than I am -- and those aspects contribute to how I feel about myself in general.  No where is this more evident than in my social/dating life.  How do you feel sexy when you're bent over and hobbling down the road like a 70 year old?  How do you expect someone to love a broken thing?

The 3-4 months in 2007 when my back was its worst were horrible for me because not only was I in pain, I felt isolated because of it.  It was before how I knew to ask for help, it was before I knew how to talk to people about back pain.  I'd go home from work and start shoving ice packs down my pants, take my vicodin, and generally be useless for a few hours.  I couldn't drink while I was on the narcotics/steroids, and I think people were unsure about whether to ask me to bars/events or not.  So basically take a hermit and give them a reason to isolate themselves and that's what you get.

I had to give up softball (my main social outlet) and kickball (but would often just go and sit on the sidelines).  I couldn't go to the movies because sitting down that long was painful.  I couldn't dance (and if I were near a dance floor invariably people would pull at me and try to get me to dance).  I couldn't even wander DC at night (I had a 20 minute time period before my back would start to become inflamed). 

So yeah, I might complain.  You try to deal with chronic pain 24/7 with a smile plastered on your face.
It's harder than you think.

So yeah, I might complain.  But venting my frustrations means that I'm not giving in to them.  It means there are things I'd rather be doing than sitting in bed twiddling my thumbs.

So yeah, I might complain.  But at least I'm not going the way of people who have become addicted to pain medication.

So yeah, I might complain.  You don't have to empathize.  But walk a mile in my shoes before you criticize.