… and I am. Now get over it.
It’s summer, and the more I go out, the more I run into people who get spontaneous, explosive, diarrhea of the mouth because of said disability. Or rather, the walker I use because of said disability.
Here’s the thing: over a year after having a HSCT, not only am I not any better, I’m actually more dependent on a walker than I was before it. While I definitely made use of the walker for trips to malls, museums and parks pre-HSCT, I didn’t usually bring it to church, doctor’s appointments, cafes or book stores. Now, it’s constant.
My “invisible illness” has suddenly been made manifest by way of a black rollator. And people- strangers, acquaintances, and fellow churchgoers are starting to lose their collective minds. Or at least the part of their minds that controls uttering insulting inanity under the guise of making small talk.
So please, allow this post to function as verbal-Imodium. Refer to it whenever needed.
- I do not owe you an explaination as to why I’m using a walker. Or a cane. Or just walking with a limp. Or if you notice I have a port placed in my chest, or any other visual cue that I have a chronic illness. Understand this please. Sometimes, I *may* want to talk about it. Many times I don’t. Why? Well, most of the time, when you may run into me, I’m out in public. In line at Starbucks, riding a stationary bike, trying to buy a new bottle of nail polish at CVS. In other words, I’m doing every day stuff. I want my white mocha latte, not to discuss MRIs. It’s jolting, having someone trying to get me to waive HIPPA laws because they can’t understand why someone who is not an AARP member has mobility issues. You’re curious. Alright. I’m curious as to why so many grown folks who should know better… simply don’t. Remember: I owe you NOT ONE IOTA of information about my health.
- Back to that “riding a stationary bike” line. It simply bugs people out to see me out, working out. The thing is, I do. For the past 10 months, I’ve worked out at a local Y at least three times a week. I do several miles on a stationary bike at level 20, which is the highest. I push 130 pounds (30x) on a hip abduction machine, then do the same with an aduction machine. I get sweaty, shiny faced and gross, lifting 40 pound weights above my head… 30 times. Other Y members some times stare: why does a lady who stays on a stairmaster for 10 minutes need a walker? I know they think this, because a number have asked. Well, refer to number 1. And do know this: MANY DISABLED PEOPLE WORKOUT. In fact, if I didn’t, there’d be no need for a walker because I would be bedridden. Exercising has reduced my lower back pain to a tolerable 2 or 3 out of a 10. It has made me more flexible and able to lift that walker up the stairs in my building. It keeps me more independent and far less stressed. And, I like it. Call it endorphins or whatever, but I feel really good after a workout. Really sore, too, but it is so worth it.
- I have a rare variant of CIDP which only effects my sensory nerves. It is not Multiple Sclerosis. It is not Lupus. It is not ALS. It is not Lyme disease. It is not Myasenthia Gravis. It is not COPD. It is not Parkinson’s. Don’t know what CIPD actually is? Oh, not too many people do. It’s okay. It is most definitely not okay to speculate on how “maybe I actually have xyz” and doctors from Cornell to Northwestern and even the Mayo Clinic are ALL wrong and you “know” it’s xyz. Shut up. It’s not that I think doctors know all; based on my history, I’d say most doctors know a small part, and they may barely know that. But I’m not going to take your word for it, Mr. or Miss Wikipedia/ Web MD/ Healthline pro. You are not Doctor House.
- As a corollary, please save your lemon juice/kale/tumeric/ginger/supplement/gluten-free/vegan/ACV/fish oil/paleo/essential oil/basil/garlic/coconut oil “cures”. Maybe sipping lavender-infused tea 6 times a day for 5.5 weeks really did help your neighbor’s cousin’s boyfriend’s grandma’s arthritis. For real. If you’d like me to give it a try, just go purchase all that fresh lavender, or raw honey, or camphor or unprocessed, organic whatever, and I’ll give it a shot. Okay? Nah? Then stop advising me on what I should consume if you’re not going to pay for it.
- Please stop praising me for exhibiting such grace or bravery for living. Look, I know this is meant as praise. You probably cannot imagine having the reflexes of an 85 year old in your 30s, or having a nurse come to your home to jab a needle in your chest to infuse a steroid and a donated blood part as treatment for years. I couldn’t have imagined it myself six years ago. Until it became just a regular part of my life. That’s the thing, THIS IS LIFE for me, and when you gush over the fact that I’m at the Y with Zoe, or buying a bottle of nail polish, or generally just… alive… you’re also, most likely unintentionally, saying that my living with a disability- as opposed to, I don’t know, dying?- is too horrific for you to even contemplate for yourself. If this is true, okay. Hey, you can go to bed thanking the Lord that you are NOT me, I don’t give a crap. Just keep the exaltations that I haven’t hurled myself off a cliff to yourself.
- Another corollary: watch what you say to me- especially- in front of my child. Look, Z is aware that I’m not like most mommies. She has only ever had a sick mom. I changed her diapers and gave her bottles with IVs stuck in my arm. She has gotten attached to all of my longtime home nurses, and thankfully, they are crazy about her, too. This is our normal. It’s not ideal, of course, but it is our lives. I thank God everyday that Z has the character to not be afraid or angry or even confused. Do not introduce YOUR negativity about my health to my child.
- There is so much more to me than CIDP. It’s weird that I even have to write that, but it feels like way too many people cannot grasp it. I pay bills, cook (not so great, but we all eat it), write (well, duh), read, read some more, watch TV and movies, go to church, talk to friends, take Z places, have sex with my husband (uh, yeah… and a lot of us disabled folks do), visit my mom… I’m a homeschooling mom, a lecturing aunt, a not-so-great clothes-presser. I have a fro-hawk. I watch YouTube videos to get tips on filling in my eyebrows. I read my friend Thomas’ books and ponder his brilliance. I listen to “Put Your Hands Where My Eyes Can See” and ponder where 20 years went. My life cannot, and should not, be reduced to a four letter abbreviation. I contain multitudes, Baby.
- Sometimes people will invite me places and I have to turn it down. Not because I want to, or because I feel absolutely awful (which does happen). I don’t go because I can’t… they may invite me to their apartment… a fifth floor walk-up with no elevator. Or to their backyard barbeque and their yard is full of ditches, rocks and cracks. Sometimes to get in their homes, there’s only four or five steps, but there is no railing. Sigh… please understand that many (but certainly not all) public spaces- malls, bookstores, musuems, libraries, many parks and eateries are ADA– friendly and have ramps, wide pathways, good lighting, etc., things that make my going out a safe and enjoyable possibility. Many private establishments, especially homes are not set-up that way. Things that I took for granted and was able to do just a couple of years ago, I no longer can. Please understand. Offering to lift and carry me, while coming from a good place, will almost certainly garner a refusal on my part. Why? Because the thought of being carried like an overgrown 9 month old is apalling. I especially loathe people taking it upon themselves to “help” by grabbing my arm, my bag or me without even asking. I’m not stupid. I’m not being stuck-up. Respect my autonomy when I decline, and if you’re unsure of how to proceed, please ask. While I may decline your Labor Day cookout, I may be there for your poetry reading at an open mic night at a gallery.
I’m sure some will read this, and like any hot button topic (think racism, religion, politics), will try to avoid it, and invariably me, because they don’t want to say or do the wrong thing. Okay. I suspect a good half of the people I’ve known in my life feel this way to certain a degree. If, however, you don’t want to fall into this group, but still have concerns about messing up, please just try to remember The Golden Rule and don’t be a jerk.