(5/10/20
Before I was diagnosed I was a free spirit, a traveler, an exceptional student, a steadfast worker, and a loyal friend. Do you remember who you were before you were diagnosed? One of the most heartbreaking parts of being diagnosed at such a young age was replaying how much I missed out on:
"Congratulations you have a promising future ahead! You can do whatever you want with those professional skills! Oh, never mind, do you have the number to the social security office?”
One of the life-altering impacts of many disabling illnesses is the theft or rerouting of our purpose as human beings in society.
Philosophers & theologians have been disputing and pondering this question for centuries, but for some reason, I feel that I should have a better grasp of this than them anyway. MS suddenly limited my options, so the process of elimination should make it easier, right?
No, no, no, what MS did, was not alter my purpose, it just limited my options. It has slowed down who I am. Let me offer you one dull, quotidian example to keep it simple:
Getting Dressed
Step ONE: Begin every morning ritual with a fresh cup of coffee…….
I can no longer get dressed in the morning without checking the weather report because of medical sensitivities to heat and cold, so I have to adapt to, and find accommodations for the weather.
I also need to consider where it is that I will be, because maybe there will be air-conditioning and I will also need a sweater, but that’s an item that can feel heavy on my body and tire me out early, making it moot.
ACCESSORIES! A backpack or large handbag can house my foldable cane nicely, but if you have to carry other materials…….
A wheelchair can serve as a walker & cart for your items, but might be an obstacle when trying to be agile & mobile, while negotiating crowds & seating options. A walker can do the same, and is easier to maneuver and store, but in my experience, confuses people since I am not over 80.
OJO: Be prepared to answer invasive questions from strangers if you are under 50
CANES offer a wide variety of options, but carry their own stigma
The Foldable Cane: my adaptive walking device is the foldable cane. You can discretely fold it up, and adeptly paired with a PumpkinSpiceLatte & oversized handbag: you’re as basic as everyone else!
The Walking Stick: Also a favorite of mine, because it’s sturdy and reliable, but only when taking long walks outdoors. Walking Sticks in an urban settings may draw attention & quizzical stares in line at the market.
The Original Cane: The OG Cane comes in a variety of color schemes, handles & pedestal options. This is a timeless, clear marker of age & disability; until canes become a regularly accepted fashion accessory.
FOOTWEAR: This is very dependent upon my symptoms:
Sandals: always a good California choice, but if your foot, toes, ankle or the bottom of your foot is numb, spastic, stiff or myriad other options, you might not be able to keep them attached to your feet on a regular basis
Heels: just thought I’d try to be funny lol
Tennis Shoes: Generally a good choice, but calls for you to tie laces. This can be an anxiety stimulant early in the morning, or just challenge you other days
Velcro Tennis Shoes: see *
Boots: This is a more advance option for experienced MSers because it takes more time, flexibility, buckling/tying, use of socks and may create an unwanted increase in body temperature
Clogs: A very tempting choice to try apart from the high costs, and *
CLOTHING: Now that the weather & minor mobility equipment concerns have been addressed, it is time to select the clothing:
There are many elements to consider when selecting a garment. Dress codes can infringe on the ideal outfit, for example on an extremely hot day, NAKED could be the ideal wardrobe choice, but you still have to wear pants at the office.
If I have to stand or use my legs regularly, something tight helps me with numbness, balance and sense of movement. Unfortunately leggings, leggings and compression pants are often not on the dress code. Although, one could argue that you can wear these garments beneath other more acceptable pieces, they would cause you to overheat, thus making the option impractical and undesirable.
Changing weather & changing symptoms while make this a daily penance since there is no single full-proof option
Lastly, moo-moos have not made much of a comeback, & nudist colonies hold their own set of challenges, but you can dream, so make your own style**
Fashion is not at the forefront of my priorities or maybe maybe not on my radar at all, but even it can be modified to accommodate different needs. If any clothing designers are reading this, I have a long wish list that includes:
- Magnetic zippers
- No-tie shoes
- Breathable formfitting clothes
- Lightweight everything
- Soft Fabrics
- Functional POCKETS (this can also be found on the wishlist of: Every Female Ever)
These extra considerations are part of all the invisible obstructions that can be overlooked by those who aren’t obligated to experience them. This is a daily routine, and it’s those mini micro moments hidden from public view that differentiate my new life, from the old. Plus, at least I had Athleisure down to a science long before they sold-out during the pandemic.
Your coffee is now cold.........
* This can be the most difficult step because you will weigh: fashion, practicality, and most anxiety-inducing: Is it socially acceptable for me to wear this outside of the house?
**good luck!
(8/13/20) UPDATE:
The pandemic has since expanded and enhanced what society considers "socially acceptable". You no longer appear to be sick after leaving the hospital with a face covering, thus sparing you some judgmental looks of medical appropriation.