"CHATALLICA"

by Mary

Right around noon, on a Saturday long ago, I woke up blind. When I first got up that morning, I had a severe headache, similar to a migraine.  I took two aspirin, because from experience I knew that taking medication and going back to sleep often worked.

I woke up totally blind in one eye, and in the other eye I had cloudy dots that moved around. It was similar to trying to see through a completely rain-spattered car windshild. After I found the telephone, I called for emergency help. The person taking the call felt that I was playing a "prank".  I called my relatives and friends, but they weren't there. Some time later, a friend got my message, rescued me, and took me to the emergency room of the nearest hospital.

I had "vein occlusions" or ruptures in both eyes, and they were forming clots. In the totally blind eye, I already had a vision problem which might be related to the Multiple Endocrine Neoplasia Syndrome (MENS) illness that I have. I have amblyopia, complicated with multiple optic nerves, and doubles and triples of blood vessels. The other eye is normal, except for doubles and triples of blood vessels. Doctors at St. Rose Hospital sent me to UC Medical Center in San Francisco. I was given a medication to keep my eyes from having more occlusions, and to help clear up the ones I had. 

For the next month, I went through numerous medical tests: Eye tests, dye tests, CT scans, X-rays, blood tests, and there were many other tests, but I don't know what they were called. Doctors from all over the country were called in to study my case, including doctors from military research. I went through the entire experience blind.

Three months down the line, after dealing with thoughts of suicide, my vision started to return in both eyes. The bottom line is this: Doctors don't know what caused it, and they aren't sure why it suddenly got much better.

Several more months, and my vision was even better. I have several "blind spots" that are still healing.

I asked the doctors, "Could this return?"  

I was told, "We don't know what caused it, so we don't have an answer."

I know the heartbreak of being blind, and I live with the terror that it can happen again, so my CHATALLICA has no eyes.

The last time I had surgery for my second and third parathyroid adenomas, I also had to have a prolonged surgery to remove massive scar tissue from three previous neck surgeries (Parathyroid tumor #1, Medullary Thyroid Cancer, then lymph nodes).  The surgery was intense, and scar tissue had to be removed from my larynx and vocal cord nerves. I recovered from the surgery barely able to whisper. After I went home, there were many days in which I had no voice. It stayed that way for many months, and gradually turned into a "Mr. Bill" voice. I would try to work, answer the phone, go shopping, and it was really depressing because at least twice a day, someone made fun of my voice. I felt I had no voice in things that mattered to me. It's been a while now, and my voice is different, but I can quietly talk.  (That doesn't mean that people listen to me.)

I know the frustration of not being heard, so my CHATALLICA has no mouth.

I inherited very blond and Nordic traits from my ancestry. I also inherited a Cherokee Indian nose from my half-Cherokee Indian grandmother. I don't really look like anyone else, and the contrast of the Indian nose with the Nordic coloring is very noticeable. I've been teased about my nose all of my life. In my high school yearbook, in the area where comments are made under a person's photograph, a boy published under his picture that he wanted me to have my nose fixed, because it made me the ugliest girl in the world.

Everyone laughed.  I laughed, on the outside.  Everyone loves a clown.

My CHATALLICA has no nose, but my nose is my grandmother's, and I'm proud of it.

Index of Pages

E-Mail

A Founding Member and Webmaster of:
PHEOCHROMOCYTOMA MEMBERS GROUP SITE