Invisibility

As a fat woman, I’m used to being invisible.  Until people want to use me (both personally and ideologically) for abuse.  But for the most part, I go through life, with very few people realizing I exist.

Oh, I can do some things that make me stand out in a crowd, like when I colored my hair purple for a couple of years.  People had to be extremely determined to not want to see me to ignore that, and there were plenty of people who were still very invested in my invisibility that they ignored the splash of color and whimsy.  Even so, many people who would normally just ignore me did see the hair.  I became a bit more visible, a bit less “fat.”

And then, my whole life changed.

Two year ago, 2014, was a pretty hard year for me.  It started with a concussion, ended with a concussion, and the middle was also filled with concussion.  Yes, I had three concussions in one year.  I don’t recommend this course of action if your life is too busy.  Really, there are much better ways to slow down.

But I was talking about invisibility.

I didn’t go to the doctor for the first concussion.  A friend of mine who is a doctor later told me, “yeah, you had a concussion.”  I also didn’t go to a doctor after the second concussion.

Well, not right away.  I did eventually go because I was having memory issues.  We had just had the first appointment, where we discussed neuro-pysche testing to see where I might be having impairment, and a few weeks later I had the third concussion.

This time, I went to the emergency room.  Because, one second I was walking my dog, and then, sometime later, I was on the sidewalk with my dog licking my face and no idea how I got there.  And I was nauseous and had a horrendous headache.  Oh, and I was dizzy.  Oh, and I was confused.  Oh, and I couldn’t communicate very well either.

On the admission forms, I think I put down “unemployed” when it asked for profession.  And from that point on, I became an attention seeker, drug seeker, and person who needed counseling.  At least, that was what all the doctors tried to say.

The doctor in the ER basically patted my head and told me to go home, it’ll all be okay.  Two days later, I was so confused, I called my doctor’s office.  I don’t even know why I called them, but the nurse was so concerned about me, she called my husband at work (threatened me with sending an ambulance for me if I didn’t give my husband’s phone number to them) and made him come get me to take me to the ER again.  Same ER as previous, and they were so sure I was just attention and drug seeking, they let the waiting room clear out 3 times before I said enough.

I went to the front desk, and told them that since I, and more importantly, my insurance money, was so unimportant to them, they could take me off the list because I was leaving.  They first told me I’d already been called.  I must have been in the bathroom, or stepped outside when they called me and I just missed my turn.  Nope, hadn’t been outside (it was winter, what was I going to do outside?) and while I had gone to the restroom once during the 3 hours waiting, my husband was in the waiting room listening for my name while I wasn’t able to hear it myself.  Then they tried to tell me I was next on the list.

Well, which was it?  Had I already been called, or was I next on the list?  The lying got to my husband, and he said, “We’re leaving.  You’ve lied to us, it’s obvious she’s not going to get proper care here.”  And we walked out.

A few days later, I had a well woman visit with my primary physician’s nurse practitioner.  I said I didn’t want to talk about that stuff, as I could barely talk.  I wanted to talk about what was going on.  I had many symptoms at that point.  I couldn’t talk without stuttering.  Too much noise around me made the constant headache worse and made it so I couldn’t talk at all.  I couldn’t even get dressed by myself because I couldn’t remember the order clothes go on (socks before shoes, bra before shirt, that kind of thing).  And when I was really tired (which was all the time) I couldn’t undress myself either.  I couldn’t tell time.  I couldn’t remember words.

And the nurse practitioner didn’t want to discuss any of that.  The only reason I was visible to her was so she could conduct the well woman exam.  In one shining moment of standing up for myself, I told her that it had been a few years since I’d had my “annual” cancer screening test done, and if it took another few years for it to happen again, I was more than willing to wait, but we were going to talk about the effects this third concussion gave me.

And gee, I became visible for a second while she told me she’d get me in to see a neurologist.

The neurologist didn’t see me.  I mean, we had the appointment, but he didn’t see me.  He saw an unemployed fat woman, looking for attention.  The only reason he referred me to the therapies he did was due to a friend I brought with me, who argued him in to it.  The speech and occupational therapists were wonderful and helped so much.

But there was so much more I should have been doing, and I knew it.  So I got a referral to a different neurologist.  She was supposed to be so much better.  The first appointment, she saw “unemployed” on my paperwork, and said I was seeking attention.  Yes, she actually said that, and told me I needed to be in counseling.  I told her I was in counseling (because I was), and that’s when she referred me for neuro-psyche (which had gotten put on the back burner due to the third concussion).

It was the only positive thing she did for me.  Because the neuro-psyche testing showed I had Post Concussive Syndrome, and he was able to get me into therapies that helped me continue to recover.  But at my follow up with the neurologist, she completely denied the findings of the testing I’d done, and told me I was drug seeking.  Funny that, I never once asked for any drugs.  Just appropriate therapies to help me recover.

I was invisible to her as a patient.

In the 20 months since the third concussion, I’ve only had one doctor actually see me.  A neuro-ophthalmologist, who identified my current clumsiness and dizziness and loss of sense of where I am in the world was due to my eyes seeing 3″ off from where things really were.  He listened to me.  He did testing, including testing that had nothing to do with what my prescription for glasses was (walk down this hall with this very busy floor pattern and tell me what you see or feel).

At the end of the appointment, he made me cry.  He said to me, “We will be able to get you back.  You are still in there.  You didn’t lose yourself in this concussion, and I am 100% confident we will be able to get you back.”  He saw me.  He didn’t read “unemployed” and see a middle aged fat woman and think “attention seeker.”  He talked to me like an intelligent person.  He listened to what I said, and later brought up a few things I hadn’t said, because who equates that with eyes?  (My continued experience of becoming so overwhelmed by input that I would either start stuttering or completely lose the ability to speak at all.)

I was no longer invisible.

Things are getting better.  I’m still in the prism glasses that are helping me. I’ve been driving, a little, over the past couple of weeks, when I’d not been able to drive for almost 20 months.  I’ve no longer got bruises from walking into corners and doorjams.  And I’ve not been dizzy in over two months (since I got the new glasses from him).

I’m coming back alive.

And I’m determined to never again be invisible, to anybody.