You know* what they say about Assumptions.

I have had the misfortune to have been a recent consumer of western traditional medicine, a total knee replacement, my second. Trust me, I won’t be requiring another one, but I digress.

I have a rare neuromuscular condition that affects my motor skills it’s progressive, but I believe it will allow me enough time on the planet to get a few items checked off my nefarious crip agenda. There isn’t much data or research on my issue, as there is little to no money to be made from it, aside from a few assistive devices and a few orphaned trial meds. that I refuse to ever be the test subject for.

Being that this wasn’t me first surgical rodeo, I did my due diligence when researching the best surgeon available for the job at hand, I spent a lot of time explaining my situation, the affects of certain medications pre- and post op on my body, and downloaded the* anesthesia protocol for that specialty to avoid on their end of things.

The surgeon was billed as a rock star for this type of ortho surgery he had a great set of diverse reviews, I checked him out as thoroughly as I could. Everything was in order, all the ducks lined up and off to surgery I went. Now, mind you, TKR is done under a spinal anesthesia protocol, so I was quite aware of my surroundings while in the OR. I dealt with the anesthesia really well, had the new part installed, glued, sawed and screwed in there and was soon off to recovery. So far, so good. Indeed.  It was soon time to take a ride down the brightly lit corridors that could resemble a transition from this earth into the unknown while quasi blotto, but no, I was still very much alive.

For a while… Now, if you haven’t ever had this type of surgery, I feel compelled to tell you it hurts…  it hurts like Hell. In order to mitigate the pain from a procedure like this, they use opiates to control the agony. In the not too distant past, (when I had my first TKR) they gave me a morphine pump, so I had some semblance of control as to when* I needed some relief. I also require oxygen after any type of anesthesia, as my involuntary muscle control falls off very rapidly post op. and my level drops like a stone. Since the Opioid crisis* those days are apparently gone forever. The surgeon put me on a course of Dilaudid, long and short acting.  This* was not going to end well, I just knew it after the very first dose.

Being that once a protocol has begun, and one cannot summon the surgeon directly to get it changed, you are at the mercy of the powers that be. My second day on the pain management protocol, I began to lose time, along with quite a marked decrease in my manual dexterity and overall muscle control. I knew* this could not be right. That afternoon they began to give me long acting IM Dilaudid in addition to the short acting pills anywhere from two to four hours apart.  I continued to lose control of my hands and was having a lot of trouble breathing, I was fighting for air and began to panic in the early hours of the morning. The last thing I remember  thinking was I can’t get enough air I began to hallucinate, but focused on the monitor above my bed. All I remember from that time was slamming the Call button for the nurse with my right fist.

It was late morning when I came around, but I did remember seeing a lot of medical staff running toward be before I crashed.  My Spouse arrived soon after and I was so glad to see her, as I truly believed that I was on my way out earlier in the morning.  I eventually found a balance point after the crash, though they were still giving me the short acting meds. I began ditching them and going without them while trying to recover. I just knew this medication was not something I should be taking.

After having had this experience, and having had some discussions with my surgeon, post Op., I realize how truly pervasive Big Pharma is. My surgeon was very honest with me in regard to the protocol that they were legally forced to enact while I was under their care. They had no choice in the matter, given my disAbility and what could possibly happen given the interactions I have with so many medications. I was likewise honest with them about not taking any pain meds for the last two days after the  post surgical incident with the Dilaudid. I will not be taking this medication ever again.

The assumption was that while I was under the care of the medical system, it would cause me no harm (clearly on this occasion, it did). The other assumption that was made on the part of my surgeon was that I would not react adversely to this medication, as for the majority of the post-op cases, it has not. As I stated before, this condition is rare, and there are very few documented cases nor empirical research to give weight to any research that has been done.  Despite my best efforts to stay alive with my disorder, I live in a precarious state where there are so many unknowns. I feel that gone are the days of individualized medical treatment despite propaganda to the contrary. If you do not conform, beware be informed and be pro active.

~Crip Out~











Everyday Inquisitions

It’s a rare thing indeed when someone who presents as *Abled asks me about my disability. Occasionally, it’s all about the method and context of the enquiry, not the actual person asking, allow me to expand.

Living with a visible disAbility I have always been the subject of scrutiny by society at large, more so now that I use a Power wheelchair, (very difficult to ignore) As Harry Winston once said: “People will stare, make it worth their while”. Truly, words to live by. I admit, I have done and will continue to do My* part in making it worth society’s while if they consider my personage stare worthy.

The other afternoon on public transit a middle aged woman sat opposite me on the bus, she presented as Abled* but I refrain from making broad assumptions.  She asked me all about what my chair does, commented on the type of covering I have on my seat, back and armrests,(Sheepskin) and further, why I had covered my seating area in this material.  I gave her the reason, being my skin has become delicate, and I’m prone to pressure ulcers, as many a wheeled folk are. She took a long hard look at my chair again and asked me how long I spent in the chair every day. The answer being, variable dependent upon how I’m feeling and moving, or what I plan on doing on any given day.

I mistakenly thought this would conclude the inquisition, but alas, no.  Society in general piques my interest occasionally, and I tend to choose my battles with the utmost care.  This person was simply *not going to let this opportunity to interview a real live Crip pass her by… oh my, no.  I said to myself, “Self, here comes the* windup, she’s gonna do IT, you just know* she is! Pay close attention because here comes the fastball, it’s a mean ass burner of a curveball  and I’m ready to knock it out of the park.  She pipes up, “So, why are you in a wheelchair anyway?”…  See, I told you. This* was gonna get *Real.

I usually avoid talking about myself, and don’t seek out strangers to speak with in general, but this* winner found me. I was four point restrained on public transit facing off with what could arguably be a true sitting duck. Quack.  Oh my, this* was going to be JUICY GOOD! I told her precisely why I use a power wheelchair, I went into a bit of gory detail in regard to my disAbility, the pain, the glorious bouts of  agony, and yes, the glorious truth in regard to my prognosis . I also regaled her with anecdotes pertaining to the numbskulls I encounter on a daily basis.  I discussed incontinence, and my ability to choke on nothing but air. I told her I could ostensibly bite the biscuit right here and now in front of everyone, given the correct sequence of circumstances. I gave her her bus ticket’s worth alright.

She blanched and flushed as only a Caucasian can.  She mumbled, and fumbled and noises eminated from her that I don’t ever think I’ve heard before. This my friends, was a piece of unparalleled oratorical excellence. I hit a veritable grand slam this time, Harry Winston would be proud. She appeared to have been experiencing  information (TMI) overload. I don’t know what thoughts were milling about up there in her cranium, but I thought this baby might actually blow a gasket. Suddenly she bolted out of her seat and pushed the stop button as if her life depended on it – several times.  She appeared panic stricken. (By the look of terror that registered on her face, I done real* good.)

The bus stopped and she scampered away like scared wild thing.  I was secretly proud of myself for enlightening the *Abled* it always feels good when I can help them understand my life a bit better. An old fellow mid-bus with a cane applauded the performance heartily. Some other good hearted soul offered me half a sandwich in return for the entertainment.

I realize that I could have fired back to her question of why* I am in a wheelchair with… this: Why aren’t you?

~Crip Out~






Ten Things…

Things I wish the Abled*could know about people like me, who live with a neuromuscular disorder / disAbility.

1. I am not your inspiration, nor am I your cause.
2. I am not your mascot, or a posterperson for, nor the absolute authority on my particular disease, nor am I the expert on anyone elses.
3. I have my own dreams and ambitions. Respect them.
4. Respect my personal boundaries. I respect yours.
(that includes my wheelchair or mobility device/equipment or my service dog etc. so touching anything I have going on over @ here* requires my express consent). Otherwise, it’s called assault and yes, I will press charges.

5. I can see and hear you perfectly. Address me directly. (Unless I’m ignoring you). You may be surprised/shocked by my reply, I’m not a toaster. I’m a human being, just like you.

6. No,I don’t know your sister’s friend X who also uses a wheelchair. (But if she’s hot* and likewise inclined* and I happen to be single* at the time*~ maybe you can get me a phone number?
7. If I need help, I can ask for it. Conversely, if You need help, you can ask me too.
8. You can pray for me if you have the burning desire to do so. In my experience, it won’t change my reality. No, I didn’t do* anything to deserve this condition that you may believe was punishment from some vengeful entity, but If that’s what floats your boat, knock yourself out. (just don’t touch me, or make me run over you with this big black chair).
9. Yes, sometimes this* hurts (beyond belief) but what hurts more, is Ignorance… That* hurts everyone.
10. No, I never imagined I would ever look this fabulous. People stare. I do my utmost to make it worth their effort.


~Crip Out~

Thoughts on Ableism*

There exists a term called  *Ableism defined by the Urban Dictionary* thus: Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.

That being said, Most of us “Crips” (slang* for disAbled folk solely used amongst our peers) Experience this phenomenon on a regular basis.  It affects us in any number of ways. I choose to make Ableist moments teachable moments when and if I have the chance to do so.  Hopefully my re-education will have some lasting impact upon the ignorant.

Case in point, just today I had someone ask me where my “friend” was.  Let’s frame this a bit better for illustration’s sake.  Admittedly, I am not a Gold Star* Crip.  I may or may not have had my disAbility since birth, but the onset struck hard and fast when I turned fifty. Sometimes I use a rollator (rolling walker) but predominantly I use a power wheelchair that I have wrestled into submission by tweaking the power, settings and programming. Indeed, I confess to being a geek*.

Alas, I digress. I was at an open air artisans market that I had gone to only once before today and a woman I certainly never met previously came bounding up to my right side and grabbed my elbow hard enough to make me wince and said,”Where is your friend today? Are you out here by yourself? Can I call someone for you?”  I was so momentarily stunned that I let go of my rollator and almost fell flat.  I had no idea who this person was, why she had grabbed me, and the reason for the volume of her voice at that moment.  It was like my very own personal Tsunami.  She went on to say”Where’s your Friend?” Now, I happen to have a lot of friends, but I just couldn’t understand why she was repeating herself here.

I went to the market with my friends, was supposed to be meeting them later at a restaurant. I had my cell phone in my purse, and indeed, I was alone, very happily so until this stranger accosted me.  “My friends are waiting for me at the restaurant, I have my cell phone, I can call them on my phone, see? This is my phone. I can text them too. Now, please let go of my arm and stop yelling at me like this.”  To which she replied “Oh no! you’re not Margaret at all! I am so sorry! You see Margaret looks a little like you and she’s really deaf and has Alzheimers.”  I replied, “Alright then, since I’m clearly not Margaret why did you grab me like that?”  My new grabby buddy replied,”You have a purple walker thingy and you walk funny…uh, I don’t mean funny ha-ha, but off balance and from the back I thought…”  I looked at her and replied, “So, we look alike then?”  Grabby sputtered “Um yeah you all Look alike kinda middle/older wobbly with walkers, I try to help where I can, I mean all of you handicapped people always need help, right?”  I thought I was going to have an aneurysm right there on the spot.

“First, I am a fully independent adult woman who just happens to live with a disAbility that is clearly visible. Second, when you put your hands on my* body, or my appliance that constitutes  assault. Thirdly, I do not knowingly have Alzheimers, but may become hard of hearing in my right ear thanks to your “intervention” thanks.  I’m going to see my friends now, so good luck with finding Margaret.”  I rolled away bruised but not broken hopefully some light has crept into the darkness of someone’s very small  mind  who thinks we* all look alike.

~Crip Out~