I am a Baby Pegasus Unicorn. I realize you may not be able to see my horn but it’s there, supporting my halo, and if you’ve never seen me ballet you might not realize how talented I am that even on a dying (okay, completely dead) foot with catastrophic widespread arterial and veinous clotting I was able to float in my jetés and other jumps with an angelic face and graceful arms and hands. I don’t sweat, I glisten in the scents of rosewater, Burberry, and Wicked Wahine. There aren’t grey hairs on my head but there is platinum glitter. I may be somewhere over 35 with a broken back, one leg, and a laundry list of rare conditions and medical concerns, but I’m also fit, toned, and sitting at less than 15% body fat.
Baby Pegasus Unicorn
I wasn’t always this gob-smackingly spectacular and interesting. There was a time when I seemed to be perfectly healthy while still maintaining a very active and adventuresome lifestyle: I was just a unicorn then, as if unicorns are something to ever just over, and I never needed anyone’s help doing anything. And then…
Then I started to get sick. Blood clotting happened and I had pulmonary embolisms and strokes while arteries and veins were simultaneously being completely occluded. Autoimmune conditions and autonomic dysfunctions began to arise with no clear cause ~ although we know now it was the clotting, always the clotting ~ and I started having weird symptoms: rapid changes in my heartrate or blood pressure, fainting, brain fog, dry eyes and mouth, widespread chronic pain that could not be controlled, fingernails that no longer grew, hair loss, necrotic sores, antibiotic resistant rare infections, digestive problems, stuttering, weakness, musical hallucinations. I could no longer sleep even though I have narcolepsy and should have been able to sleep whenever I wanted, but because of the pain painsomnia rules the nights. I learned that passing out from pain is less restful than sleep but more restful than no sleep. And for several years as my strange symptoms and illnesses spiraled slowly downward and increasingly not only out of my control but also out of the medical establishment’s ability to understand, diagnose, or treat I had to learn to accept help at times with even the most simple tasks.
By the time I started getting answers for all the questions about my unique symptoms and proper treatment for my conditions, my left foot was Frankenfoot: it was dying and I was risking my life and sanity by trying to save it, so I had it amputated. As the treatments alleviated strange symptoms, my ability to do all the things that any independent adult would need to do increased until, despite still being in a wheelchair, I was able to do most things without any assistance.
I’m a badass like that!
Doing my own laundry and shopping. Badassery! Cooking for myself and cleaning. Such a rockstar! Opening doors by myself and holding them open while I’m wheeling my chair through them. Oooo, look at me! Wheeling my wheelchair. Diva move. Driving. Try to keep up! Wiping my own ass. Takes talent!
The list goes on and on… as does the ableism that makes me want to throat punch people.
You see, when you have invisible illnesses ~ illnesses that unless one is familiar with all the symptoms one would not suspect there is anything wrong and even when one is familiar they can still suspect or believe there is nothing wrong ~ no one jumps to your aid. It doesn’t matter if you’re seemingly young and healthy but barely able to hold your body upright and unable to walk without a cane or a walker. It doesn’t matter if you are seen struggling to get a credit card out of the wallet pockets because your hands don’t work right anymore. It doesn’t matter if your overly large handbag rattles from two dozen medicine bottles you have to keep with you at all times. It doesn’t matter if the look on your face speaks of the utter agony you’re living with and that someone stepped on your toe leaves you laying on the floor screaming in agony in the middle of the produce section. It doesn’t matter if the dog you have with you all the time is wearing a service dog vest and is alerting you to sit down immediately on the floor of a restaurant or bar so you don’t faint. It doesn’t matter that you have a handicap parking placard, people will still call you ugly words for parking in that spot because you can’t walk 20 feet without an assistive device or without stopping to sit and rest.
None of that matters because no one can see a visible reason for any of those things to happen.
If people can’t see what is wrong, there is obviously nothing wrong.
If there is nothing wrong, than you don’t need help.
Don’t get me wrong: I have a stubborn streak a mile wide and I don’t like being fussed over, but there were many times I needed help that no one stepped up to help me, whether they were strangers or even family and friends. Now that I have an amputation, however, and there is visual proof that there is something wrong with me, now people are falling over themselves to help me.
- Have a dying stepped on in the grocery store and lay on the floor in agony and screaming in pain… no one offers assistance. Get knocked over in the grocery store and knocked out of my wheelchair onto the floor… dozens of people jump in to help.
- Unable to reach something on a top shelf while shopping with a walker while I had two feet, people bustled by and stared rudely. Wheel anywhere with a small shopping basket in my lap after the amputation and everyone wants to reach things for me.
- Couldn’t get a fucking hand with dishes, cooking, or laundry when Frankenfoot was all necrotic rot and gangrene… Now people think it’s okay to just take things from my hands and take over whatever it is I was doing because I’m in a wheelchair and have one leg.
- No one stopped to let me pass when I was on a walker with two legs, but now people stop and wait obscenely long amounts of time to let me pass since I have one leg.
- No one insisted on pushing the wheelchair when I had two legs and needed to use it, but now people will just start pushing me even when I object.
- No one cooked for me when my Frankenfoot was dying, but now people will cook and shove food in my face, trying to feed me like a toddler, because Frank is gone.
- People would never stop in my path and try to block me or physically restrain me from going somewhere or doing something when I had both feet, but now people have no problem boxing me in or physically holding my wheelchair to keep it from moving when they have decided I shouldn’t be doing something or going somewhere.
I complained about this irritating phenomenon to someone one day and I was appalled that the response I got was that I was not being gracious in allowing others to serve me.
Not. Being. Gracious?!
Oh hell no.
How many of you would accept being told you’re not being gracious after another person physically restrained you, insisting on doing whatever it was you were doing for yourself?
What about taking your delicates ~ bras, lacy nickers, negligees ~ out of the washer without your permission and against your wishes, using the excuse of being helpful by doing for you what you can do for yourself?
How about surrounding and towering over you to take items from your hands in order to purposefully keep you from doing whatever it was you were trying to do?
Would you allow anyone to do any of these things to you?
So why should I be expected to allow it simply because I have a physical difference (disability) in my amputation and I am wheelchair bound?
Is it because I am disabled that forcing me is suddenly acceptable?!
Why should someone attempt to make me feel guilty and ashamed for telling someone to not touch my body without my permission, to not touch my things unless asked to, to not detain me against my will because they have decided they know how to “help” me and they will “help” regardless of whether I want it?
I am appalled at the trend in our society for people to excuse assault and abuse as “being helpful” because I am in a wheelchair.
My body… My choice.
All I’m saying is if I look this fucking fabulous in the ICU ~ sundress, makeup, jewelry, and my favorite handbag (not shown) ~ it’s not because of anyone but me.