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Do you have a disability?

Sep 17, 2010 - 0 comments




I was applying for a job with the Secret Service when I came across a question that gave me pause:

Do you have a disability?

I had never thought of my heart condition as a disability.  A disability is something that makes people limp, scares them into never leaving their house, requires prosthetic limbs, or causes slurred speech, but could that also be me?

Knowing, nearly dreading what I would find, I looked up the definition of disability as put forth by the American's with Disabilities Act of 1990 (or ADA... yeah) which states:

(Definition 1)
“The term ‘disability’ means, with respect to an individual –
  (a) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;
  (b) a record of such impairment; or
  (c) being regarded as having such an impairment.” (P.L. 101-336, Sec. )

This leaves things a bit loose.  If someone says, "You're retarded," for telling a stupid joke, are you really mentally handicapped?  According to ADA rules you are.  Or are they asserting that perception of said individual is what determines whether there is a disability or not?  What master of telepathy would be able to determine the generally agreed upon opinion of a group about some person?  Opinion?  Is perception not just that?

That definition won't do.

According to, which has been helping me look up the legal definitions to disability thus far

(Definition 2)
"Generally, disabilities fall into the following types:
Mobility Impairment Mobility impairment refers to the inability of a person to use one or more of his/her extremities, or a lack of strength to walk, grasp, or lift objects. The use of a wheelchair, crutches, or a walker may be utilized to aid in mobility.
Cognitive Impairment A cognitive impairment affects a person’s ability to reason, understand, and learn. Cognitive disabilities are separated into two categories: learning disabilities and mental retardation.
Hearing Impairment Hearing impairments range from a mild hearing loss to total deafness. Those who are hard of hearing often use their residual hearing and lip read when communicating face-to-face. People who are deaf may use American Sign Language or lip-read, and may speak for themselves or use a sign-language interpreter.
Visual Impairment A visual impairment affects a person’s ability to see, and includes: (1) inability to see images clearly and distinctly; (2) loss of visual field; (3) inability to detect small changes in brightness; (4) color blindness; and (5) sensitivity to light. A cane or sight dog may be used to assist with mobility, and/or Braille may be used to read.
Speech Impairment Speech impairments range from problems with articulation or voice strength to complete voicelessness. People with speech impairments may have difficulty in projection, articulation and fluency. Some people with speech impairments may use assistive devices or an interpreter to communicate."

Thi is very similar to my personal definition of a disability.  Though I have bouts of having trouble with all of these, they are never to the extent these definitions describe. Therefore, I have none of these.

From Wiki:

(Definition 3)
"Disability, according to the World Health Organization, is defined as umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives."

It seems no one really knows what is considered disabled and what is not.

There is the loose definition that usually says something to the extent of: any physical or mental situation that is different from the average situation of the human body that causes inability to perform common tasks either completely or without serious discomfort to the individual.  This definition I fall completely into.  The tighter definition is more of what I found on the Secret Service application to be referred to as a targeted disability:

The Equal Employment Opportunity Commission defines a targeted disability as: Deaf, Blind, Missing Extremities, Partial or Complete Paralysis, Convulsive Disorders, Mentally Retarded, Mental Illness, or Distortion of Limb or Spine.  (the application)

The application puts this definition under another category.  The first question asking if I am disabled, the second asking if I have a targeted disability.  I know I do not have the latter...

Some people classify their mutation type disabilities not as a disability but as a separate culture all to themselves (such as the deaf).  My mutation detracts from doing simple tasks on a regular basis.  Does that make their culture more or less disabled than my mutant heart or vice versa?  They do not see their mutation as a hindrance, yet they are protected under the government for having a disability.  I can't even get health insurance to keep me out of pain.  Which is a disability?  Which one should be?  Both are potentially curable if the patient is a good subject and a willing participant, but both could also be incurable.

Do I have a disability?

(I ticked no)

the girl i hope you aren't: entry 1, SVT

Aug 24, 2010 - 0 comments





Heart Health









My name is Jackie.  I am 25 years old and I have SVT and hashimoto's thyroiditis.  I also show symptoms of ADD and PCOS.  To be clear, my nearly dead thyroid did not cause my SVT.  I also have unexplained, though not uninvestigated, chest pains and my left arm occasionally goes tingly or numb.

Thanks to the recession, I am also a college graduate without decent health insurance.

Allow me to quickly introduce my conditions.  They are, after all, characters in my life story.

The SVT was first noticed when I was thirteen.  

I was team captain of my junior high basketball team and played power forward.  The first time I noticed something strange was during warm up.  We ran the court a few times and when we returned to stretch again before running onto the court, I noticed my practice jersey shaking to the rhythm of my heart.  I laughed it off thinking that I had worked myself pretty hard in warm up and this was just a new development.  After all, at thirteen, my body was already going through an irritating number of changes, why not one more?

In a later game, I started having troubles breathing.  Everything felt tight and I remember asking the coach to take me out of the game for a while so I could catch my breath.  My father had come over to check on me and I remember telling him that my sports bra felt too tight, that I needed to take it off to start breathing again.  My father did not understand, he didn't know what was going on, he only knew that his overly dramatic daughter was whining again and told me to suck it up, that I was imagining things.  So I did, because I thought I was.

The next year, I went out for volleyball at my new high school.  I was doing well and thought that I might be able to be selected for varsity when I started blacking out.  I wasn't malnourished or dehydrated.  I wasn't sweating.  I would be running the mile we had to do before practice and the world would go black, blood would rush to my ears.  I couldn't hear and I couldn't see and in order to finish the mile, I would have to run while holding on to the shirt of the girl in front of me.  Before the season began, I quit sports altogether.

Before I graduated high school, I decided to apply for a ROTC scholarship to the Air Force and got through the interview stage, but decided to wait a year to make sure that joining up was what I really wanted to do.  During my first year of college, my heart was beginning to give me so many problems - blacking out in class, episodes lasting for days - that I decided to see a cardiologist.

Going to the cardiologist, to this day, is an awkward event.  That first time was frightening and, since I was attending school away from home, I went alone.  The patients at the cardiologist I went to that day were all over 60, which I assume is more of the median age for a specialty like this, and they looked at me the same way I know I would look at any other young kid that walked into an office like that.  As if they were all saying, "Poor child, I hope she is here visiting someone.  She is too young to be here."

They found nothing through an EKG or an ultrasound so they set me up to come back for a stress test.  I failed the stress test miserably.  Though I didn't feel the episode, I had become far too used to painful blackout episodes, they caught a ten minute long episode.  

They wouldn't let me stand.
I apologized for them not being able to catch one to record.  I tried to get up.
They wouldn't let me stand.
I asked them why.
They said I was having a bad episode.
Of what?  Bad?  If this was bad, have I been dying all those other times?  What is the fuss?  I feel fine.
Sit down.
But I am fine, I'm not blacking out or anything.

When my results were analyzed, the doctor prescribed me Atenolol, 25 mg.

This was the only test I was given.

As I expected, the 25 mg was too little and I expressed this to my cardiologist every year I saw him.  The blackouts had stopped, but the episodes were still happening 3 - 4 times a day, occasionally there would be one that would last for days.

He told me to take the Atenolol as needed and with that permission, I could end up popping up to 100 mg in a one day period without the symptoms abating.  I hear now that this dose could make my heart stop or something.  I don't doubt it, but I refuse to look it up.  I don't want to know how close to death I could have been.

Though the blackouts had stopped, the symptoms had gotten worse.  Now my SVT episodes were lasting for days on end.  I would become weak from the overuse of my heart.  Twice, I have stopped breathing.  Without health insurance, however, I did not go to the emergency room.  I would rather be dead than in that much debt.  Besides, I had read on webmd that SVT was not lethal.  I just needed time.

The first time, I didn't know what was going on.  I was not frantic though.  It felt as if my lungs were tired, as if they had been running a marathon and they could no longer go on.  It was easier to let them rest than to force myself to keep breathing.  I slipped out of the world feeling relief.  It was over.  I could rest now.  Those could have been my last thoughts.  I was fortunate enough, however, to stop breathing in a room with a friend who knew CPR.  She preformed it on me and I began breathing again.  CPR is painful to receive.  I could still hear some of what was going on around me.  The only thing I remember is hearing the surplus air wheezing from me as she administered the round that got me going again.  She is no longer my friend, but I will always owe her my life.

The second time, I knew what was going on.  I didn't want to quit like the first time so I breathed as shallowly as I could muster to save my lungs from giving out on me.  I was able to pull through, but, on my own, it took me thirty minutes before I could breathe regularly again.

The fear of this happening for a third time, forced me to study up on SVT.  Until that point, I had put my faith completely in my doctor and what he had told me.  Once again, on webmd, I looked up ways to stop episodes from happening.  The site recommended cold water and breathing techniques.

Cold water and breathing techniques?  Seriously?  Based on my experiences, this sounded surreal.  What SVT did everyone else have?

The next step was beta blockers.  I was already popping Atenolol to the point of perversion so I moved one more step up on the list: ablation or a pacemaker.  This had never been suggested to me.  In the four or five years I had been under his care, neither of those had been mentioned.  I stored it in memory for another day.

Not long after my webmd research, I had an episode at my new job.  The facility had an EMT on staff so I went to her, thinking I might just be ill.  My heart also speeds up when I am sick.  Everything checked out alright, but with my history of SVT, the EMT asked me some questions on my treatment.

No, I have never had a heart monitor.
No, I don't want to go to the emergency room.  I don't have the money, and, besides, what are they going to to for me?  Make me sit in one place like you're doing right now?

Then, she asked me that question.  Everyone has a question, specific to them, that will make them tell the truth to a total stranger no matter what.  Mine was: Do you want to die?

No.  I just -  I guess with everything I have been through, I figured I would die soon anyway.  I don't think I have long.  Maybe a few years.

It was a joke I used to tell my close friends.  My plan was to die young and leave a beautiful corpse.  The truth I hadn't let myself know yet was that I truly thought I would die young.  I truly thought I was dying now.  Today was my last day, every day.  I really believed that.  

When it came out of my mouth, so honestly like that, I started crying.
Now, I don't cry.  Sure, at sappy movies and stuff, but in real life for real situations, I don't normally cry.
That lovely EMT took me into her office and spoke with me.  What treatments have they tried?  How long have I had it?  How bad is it?  What tests have they done?

Do you know about ablation?

She told me to seek a second opinion, something I had not even thought of trying for some reason, and sent me on my way.  Not without threatening me, however.  If I ever passed out at work, the EMTs, knowing my heart condition, will use the paddles on me and ship me off in an ambulance to the local (really awful) hospital.  None of which I wanted.

Her care and interest in my condition gave me the courage to seek a second opinion.  I found another cardiologist who listened to me, to my symptoms, and took them all into account.  The first words out of his mouth after I had finished talking was, "Have you considered ablation?"  He described the procedure to me, got me hooked up with an instance monitor, and sent me on my way.  My first files to him were that same day.  They had a, supposedly, major episode on record now so things went quickly.  I was hooked up with an electrophysiologist, a specialty I had never heard of before*, who explained my condition to me.

No one, in twelve years, had ever explained my condition to me.
Let me repeat that:

And he knew how to fix it.  And he explained that to me.  And I cried when he left the room.  
I don't cry.  At sappy movies I do, but not from sadness and not from relief and not from happiness.  I don't cry (often).

I shook that man's hand and told him that he was the first to explain that to me.  I thanked him, probably to the point of annoyance, and smiled so so so big.

That was a week ago yesterday.

I will be getting my new health insurance in the next month or so.  This insurance will cover more medical expenses than the **** poor money waster that I have right now.

I am going to get the surgery done as soon as that new insurance comes through.

I am excited, anxious, giddy . . . psyched is the most fitting word.  I am psyched.

More than anything, I am looking forward to running.  I have always wanted to run!  I am going to run forever once my heart is better!  I can't right now.  What if I black out and I get stranded somewhere?  I don't like being stranded.  What if everything goes wrong and I pass out and no one is there to get me my medicine or to give me CPR?  More than anything, I am afraid of the pain of having one of my bad episodes which I know would happen.

I understand it sounds weird, but that is because most people take simple things for granted.  Trust me, as someone who believed for years that I could die any day, having the ability to run is precious and beautiful and should be taken advantage of.

* An electrophysiologist is a doctor dealing with the electrical functions of the body, in my case the heart.  It is a fairly recently developed specialty, developed in the '70s.

Many people helped me as I attempted to find things out for myself, but now that we have internet (no I am not so young as to have had internet my whole life) browsing peer run sights like this or even Googling the topics you are interested in provides more assistance than I could have imagined.  The sites I used are listed below, but can be easily found through any search engine.  

For more information on ablation, SVT, or anything else mentioned in this entry, please speak with a cardiologist or visit any of the websites that I went to as I searched for my own answers: