Growing Up Sick: Her Illness

This post is a pre-story to my feelings on being diagnosed with a disease that will more than likely never go away and get worse as I age. To understand why I feel the way I feel I have to go back to the way I grew up and the only experience I have with chronic illness, my mother's.



I remember she always bought caffeine free soda, didn't drink coffee or eat chocolate.  If she did get chocolate at the grocery store it was always white. I asked one time why she did these things and she told me it was because she had a heart problem.  Something called mitral valve prolapse. She said caffeine would make her heart beat too fast and it could make her very sick. That is my earliest memory of her illness that I would later discover in my adulthood to be a propagated lie. Caffeine and chocolate are now a staple of her life as she claims the prolapse went away.

Her illness really set in and took hold of our lives while our family was stationed in Hawaii in the early/mid 90's and she started going to the hospital by ambulance on what seemed to be a regular basis( I was about 11 at this point). One of my most vivid and scary memories of this time was when my dad picked my brother and I up from school and took us to see her at the hospital.  He told us they had to do a procedure where they cut open her leg and because of that she now had a wooden leg(thanks dad, scared the crap out of us). The procedure was a cardiac catheterization, something she would go on to have more times than I can count through out the life of her problems. It was at that point she started seeing a doctor more and more and she became more and more angry at them for not diagnosing her with something more serious than panic attack syndrome. She was absolutely convinced she had a major heart issue and no one was paying attention.  Our family suffered a great deal due to her delusions.

When we moved back state side to Colorado mom and dad divorced and we went on to struggle through her issues.  For a while it appeared to calm down and take a back seat to her needing to get straight enough to support my brother and I, but once it returned it came back with a very scary vengeance. It became a heart problem mixed with a very serious mental disorder that left my brother and I fending for ourselves and me dodging accusations of all kinds. Doctors continued to hold to their claim of panic attack disorder and she continued to fight them on it.  They put her on medication that she would take and then walk around the house acting as if she was hallucinating and seeing dead people. She would have to call in to work and recover from each episode.  The ambulance would continue to show up every time she had chest pains and was having a "heart attack".

At some point she became obsessed with how she looked. She began smoking and taking large amounts of diet pills.  Dropping weight quite rapidly. She began dating someone new before quitting her current relationship.  He found out and put us out of his house. Again, the health issues toned down as she needed to get her life back in order and didn't want to scare off her new love interest. Once he was hooked it all started again.  She continued to get thinner and thinner, she smoked more and more and was buying diet pills, shakes and foods like her life line. She was hardly even eating actual food at dinner time.

I was 17 years old when her first major heart incident happened that landed her in the ICU.  She tells everyone it was a heart attack, yet non of us actually heard those words from her doctor's mouth. I have absolutely no idea how many times after this we were in the hospital, how much work she lost and how much of her story was a lie. She wasn't quite 40 and the story she always told was," I always knew I was going to have a heart attack by the time I was 40."  She has maintained this belief until this day and tells everyone the doctors failed her by diagnosing her with panic disorder.

I've been blamed for her "heart attack", I was called insensitive when I stopped falling for the made up issues and unwarranted hospital visits. She's managed 3 surgeries for a pace maker, countless ER visits, being kicked out of one of the best cardiac clinics in town and has sucked countless people into her plight. She's claimed to have had "mini strokes" on a number of occasions, although we have never heard these words from doctors.  Her job has made up positions for her to fill over the years when she had FMLA status and was always missing work.  Why she was never let go I will never understand. I have been pulled back and forth like a rag doll and finally cut loose from her games for not buying it.  Often I am now the last to know when she's been hospitalized.

Looking over this and I realize this is a minuscule peek into the world of illness I have lived with her for more than 15 years. I've lost more memory of the things that have occurred to make space for the new than I can ever think to go back and retrace. But it all has left a lasting effect on the way I view illness in myself and others. Often I struggle with self acceptance and feeling sympathetic to those who are struggling with an illness they may have no say over. I am often numbed and angered by chronic illness. My life was shredded by something fabricated and self inflicted for a very long time and I still deal with its lingering effects.