Not all professionals are professional: A tough lesson in learning to trust my gut…

My “prize” for my “garbage diagnosis”??No treatment…yet (that came later)!  But I got to try all kinds of “props” to help me keep as active as possible.  I needed “props” to help support me on my weak days…

It started with small plastic shoe inserts custom designed to support my ankles and high arches, since I was rolling them inward when I walked (UCBLs); then I graduated to ones that fit up and over my ankles since I was still rolling them (AFOs)…then we added soft knee sleeves to help me not buckle and fall; then knee sleeves with bendable metal inserts added to the sides for extra support… I was even fitted for a huge metal and plastic brace to help me hold  my violin properly (that was a sight to see! No way I was going to EVER let anyone see me with that on!); then a soft lower back brace that fit like a Velcro sleeve to help support my lower trunk and to help reverse the lordosis…then I graduated to a brace that included double enforced bendable metal to help keep me straight and support my weak trunk muscles… Then before college, we ordered a scooter to help me navigate the huge campus. Though I didn’t want to have to use it…

Now backing up a moment…I’ll get to my college years and beyond another day…That last back brace was a totally different ordeal…

I was prescribed and needed to be fitted for a new back brace. I was finally old enough to drive myself to my appointments. I think my parents had new insurance… So I was referred to a new place only a few miles from my home! Prior to that we used to go to a wonderful, bright and cheery orthotics/prosthetics lab in Highland Park. They always greeted us with a smile, they were so helpful and genuine… And so I assumed the new lab would be the same. I felt like a big grown up! 16 years old and taking myself to my own appointment! 

Yes!!! Freedom!

The thrill of teenage freedom faded as I arrived and the building felt empty. Like eerily empty.  Nobody was around except the brace guy. I didn’t see any other businesses on the first floor! All empty office spaces. 

The back brace/orthotics guy was waaaay in the back. The building smelled like an old abandoned office building. There was no “sunshine” in there.  Noting felt inviting. I was suddenly hyper aware and very nervous as I walked down the bare hallway with dirty carpet, looking for the right suite number. 

Should I just go home!?  I felt worried and nervous all alone. This can’t be the right building? I checked the address at least 10 times. It was right. But all I wanted to do was run!  I wished I wasn’t alone.  I suddenly felt very very alone.

But I need the brace! I’m here to see a medical professional! Don’t be such a baby. I don’t have to worry, right?  But that feeling in my gut screamed otherwise. I shoved that voice back and I finally found the door. 

I entered…there was no receptionist, no waiting room, nobody greeting me with an assuring smile. Just the profile of an unfriendly man who was probably in his late 40s sitting on a rolling stool with his back to the door. He barely flinched as I opened the door and apprehensively stepped inside. I stood in the doorway waiting for him to speak first. 

Where was I? This can’t be the right place?  Should I leave?

He finally turned around and introduced himself. I didn’t care for the way he looked at me. His eyes were empty and dark. His smile didn’t feel sincere. I had the sense that he wore a “mask.” (But who was I to talk? My whole life was about masking symptoms and my roller coaster of weakness. I was not who everyone thought I was…

My palms started sweating, my lips were tingling and I felt adrenaline pumping.  I think I was supposed to leave.  But I stayed. I didn’t listen to my body signals. STUPID!

Almost instantly, he instructed me to remove my shirt, and to do so quickly because it was late and I was late. (I wasn’t!  I was early! He had to be mistaken?) 

There I stood, in my bra.  I felt light headed. I was so vulnerable and felt so violated and he hadn’t even touched me yet. I didn’t know I’d have to take my shirt off completely? I never had to before? Maybe I was going to get a plaster cast made for the brace?  Like the casts made of my feet/ankles for those braces??  

Please don’t make me take my bra off.  Please God. Let me at least keep that on…I felt so humiliated.

I pretended I wasn’t nervous. I felt like puking.  He started to measure my body. 

He measured my butt.  Did he linger too long?  It sure felt like he was pressed too hard on my skin. He brushed along my butt as if he was memorizing it…not measuring it. Then he moved to my waist. My hips. My abdominal area. 

Then he was carefully measuring around my breasts. He asked what size bra I wore?  What is my cup size?

 Ummmm. Really?  My cup size? You’re holding my breast in your hand with a measuring tape… You probably know more about my breasts than I do at this point, you SICKO!!!  

The other orthotic brace professionals who made my other lower back braces never needed measurements THERE? They just had me try on different size examples, never measured me. Never touched my breasts???

I tried to rationalize…But this was for a new sturdier brace!  Maybe this one will cover my breasts, too?  

He’s a professional. He’s doing his job.  It’ll be over soon… 

He lingered way too long and pressed too hard on my breasts. As if he was sizing them up and to remember them later and not measuring me for a brace.  I felt like running. My brain was screaming at me to get OUT!!!!  But I was stuck. Frozen… 

This can’t be happening?

I rallied up the strength to speak up. I asked if the back brace was going to up be that high? Cover that much of me? Suddenly he flung his rolling stool away from me, mumbled something I couldn’t understand and then told me I could leave. When he was done with the brace, he would call. 

X weeks later, he called to let me know it was finally done. He offered to deliver it to me personally…at my house… 😳

Red flag!!! Luckily, my mom was all over THAT! She called him back and said that was NOT appropriate and WE (me and a parent) would be by to pick it up later…

I can’t remember why my mom picked up on the red flags besides the weird and stalkerish offer to bring me the brace, personally. Maybe I told her he measured me weird? But I’m so glad she did. I was scared he’d want me to try it on in front of him.  

The brace was a good fit…but it stopped BELOW my breasts. I was right. He definitely measured them inappropriately… He took advantage of a young girl whom he probably assumed was too weak or too dumb to stick for herself. Damn it. He picked me right. I wish I could have the opportunity to do it all over again. I’m a different person!  

my stupid disease put me into a situation that caused me emotional pain. If it weren’t for the disease, I would’ve never met that poor excuse for a “professional”…

My take away message? Unfortunately, not all professionals are professional.  

Always listen to your gut feelings!  They don’t lie…


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