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May: Roberta Roméy - My Story

(Stroke Survivor)

"The Dichotomy of Denial"


I was working as a college counselor when one day I couldn’t get out of bed.  I went to a doctor who did not know me; he thought I had the flu.  When I went back to work my colleagues said, “You talk funny”.

 It seems like that is how it all started.  

I was a very caring College Counselor.  I loved my students.  I did not want to abandon them.  I promised them and their parents I would make sure they had support (me, the cheerleader) all through college.  But, I woke up one morning in 2002 unable to move for 24 hours; I lived alone—no one to notice.  I kept trying to get up.  I tried to reach the phone but I couldn’t do anything; instead I kept drifting in and out of sleep.  I knew I was supposed to call my job.  I thought I was so overly tired and that’s why I couldn’t get up.  I had been working too many hours. 

On the second day, I literally crawled out of bed, leaned on the commode, and the sink vanity to help me get to my feet.  I went to an absolute new MD.  He was unfamiliar to me and how I spoke.  He said you probably have the flu. I tried to go back to work.  My co-workers said, “What's wrong with you? You don't look right. You don't sound right.” I had slurred speech.  I honestly thought I could snap out of the speech thing—it was just exhaustion I kept telling myself.  My big boss said, “There is nothing wrong with you.”  And honestly I wanted to believe him but I knew deep down he was just not caring about me.  (And I found out later, I had the most students registering for school in my department—and it was close to registration—and as far as big business goes they want you there to register those students).  But I was so exhausted, and slow.  It was becoming harder and harder to get dressed.  I had been taking $20.00 cabs: to work and home every day.  But actually for several months leading up to the stroke I was exhausted.  As a matter of fact, I had been experiencing migraines, nausea, loss of balance, insomnia and more.  I had been diagnosed with high blood pressure about eighteen months before.  The pre-stroke signs were there.  I ignored them.  

But I, even after my infamous morning of not being able to get up and get about of bed the only thing I was thinking of was: my students need me.

Somehow, after a few grueling days or maybe two weeks of this fog at work, I finally checked into a hospital).  People at work had been pointing out my slurred speech. The 10-12 hours per day thing was really getting to me (that’s what the private colleges got away with back in the day).  And my boss was incredibly mean.  His hot and cold personality was just too much.  It seemed to get worse with each passing day.  While I was out sick, my boss had the nerve to call me in the hospital to congratulate me.  He said, “You are number one.  You had the most students to register for school than anyone else”.  A few months later they would fire me, while I was out on short-term disability. 

In the hospital the doctors were saying, "We don't know what happened to you, but you probably had a TIA”.  Well, I wasn’t going to form my mouth together to say the word stroke—because that couldn’t have happened to me.  After all, I had not even hit fifty yet.  And if they—the doctors didn’t say it.  Then I was going to ignore it. 

When I left the hospital, my bedside doctor in the hospital became my PCP and he sent me for test after test after test.  I must have seen every doctor in that HMO.  I remember going to a Dr. Katz for treatments in breathing where I guess I was on a nebulizer in his office and a swallowing therapist checked me out and gave me a chart telling me how to bow my head to swallow and take sips in between bites and that I needed to eat pureed or soft food. 

"I tried to work here and there throughout the years, but unsuccessfully.  I would get fired or be eased away from the job.  My family and friends say the reason why people is don’t think I can do the job.  Job interviews came and went.  The interviewers would say things like, “You are just what we are looking for and then they would never call me.  I realize now, it was my speech—(no matter how I tried to use my tongue and my teeth)—my tongue just wouldn’t act right.  And I guess I hadn’t really looked in the mirror good--at that little crooked face.

My friends were saying, “You probably had a stroke, go to welfare, go to Social Security, you deserve it-- you worked!  But nobody understood.  My great-grand mother who raised me made me made promise not to grow up and be a welfare girl.  She used to say almost every day of my life: “Have determination, have stick-to-itiveness, have perseverance”.   I will always remember that.

The thought of going to welfare and getting food stamps and saying to SSDI: “Here I am.  I am disabled”, was so just not me. I had been working since I was sixteen years old.  I was independent.  I made a very good salary--I was in denial and I wanted to prove that this ‘thing’ was not true and that I was still viable. 

One day I looked in the mirror, (really looked) something I had somehow avoided: my tongue was twice the size; I could not chew with my mouth closed; I gagged, I choked when trying to swallow. My muscles in my body just fell down.  My house looked like a junk museum.  What happened to me?  It seems in one full sweep, I admitted all of this too myself.  I fell to my knees crying.

I ran into a previous boss who remembered me and I told him I don't know what happened to me.   He took it upon himself to help me---He became my Patient Advocate:  Mr. Hall.  He really cares about me.  Well God must like me after all, without Mr. Hall I do not know what I would have done.  I have been in and out of so many different PCP’s offices and so many specialists offices.  By the time Mr. Hall got me to the right doctors, I was at my wits end.  My blood pressure was forever mounting--sky high. 

Mr. Hall took me to RUSK NYU.  There I met Dr. Reidel, the best person in the world and I went to speech therapy with Leslie a great speech therapist.  I met a couple of wonderful doctors, Dr. Kind, another wonderful human being.  I went to physical therapy for acupuncture, heat, medical massage. But, it was hard traveling to Manhattan, it was time consuming and car fare was an issue—I did not even know there was access-a-ride or a reduced fare metro card.  I did not continue.  I think I just got depressed.

My daughter was helping out, but I felt like a financial burden.  She lives out of state, so I did not see her, my grandkids and her wonderful husband.  To this day I have not gotten over the fact that she lives far away.  I miss her more than anything, my daughter Tiffanie is progressive, smart, kind and most of all spiritual.  So are my grandchildren Genesis and Zilah and so is my son-in-law Shawn.

Today, my speech is still slurred.  My voice still ranges like I am talking at G below High C on a musical instrument; or because I can’t control my tongue for automatic swallowing, I sometimes sound like I am just growling.  So, I go from ‘screechy’ to ‘frog in the throat’ and back again in the same day, sometimes in the same breathe.  I use a nebulizer now a couple of times a day, just to clear my throat.  I am supposed to use a prescription.  But now I use my salt-water solution.  I constantly am being told now that there was a shot I could have taken, if I had known I was having a stroke.  

I had a lot of tunnel vision from 2002 on, just trying to act like nothing was wrong with me.  I remember being very sensitive about anyone who said, “You need to go see a doctor”, or “Something happened to you.”

But then one day I thought fire flies were in my house. I saw flashing lights peripherally, that weren’t there and black threads in front of my eye.  I had to go in for laser surgery.  In 2011, I had a migraine on the left side of my body that ran down the face, neck, shoulder, arm, side to my foot.  The pain lasted six weeks.  My sense of balance was crazy; I was diagnosed with a stroke.  I had to use the word now.  I also had to use a cane.  I didn’t want to.  I fell down three times within two weeks in the street.  So then I knew I had to.

Somehow, amidst all that happened, I never gave up on myself.  Maybe it was denial or determination.  Sometimes it is so gray to me, I don’t even know.  Well if it was denial, it was both good and bad for me.  Denial helped me to keep going, because I could pretend to be normal in denial.

The one thing that has kept me for sure is, prayer.  In prayer, I remember that God has not denied me anything.  His grace and mercy teaches me to trust Him.  And He reminds me to have faith and to get up and try again.

God Bless all who live with disability; be it congenital or acquired.


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