Hospital to Home: The Road to Appreciation

In my early twenties I began having migraine headaches, and occasional loss of vision. As the headaches gained intensity and frequency I began experiencing unusual crawling sensations on my face followed by the feeling of ice or water dripping down my cheek, although nothing was there. I knew something was not right and began my five-year-long search for a diagnosis. After a long battery of tests I got the answer, “there is nothing wrong”, followed finally by “you need to seek counseling”. They convinced me this was “all in my head” and I scheduled the appointment with the psychologist. As I sat in the psychologist’s office I wondered why I was seeking counseling, and what was I supposed to say.

I happened to find a psychologist that got into the business, I believe, because he needed help himself. Week after week I would sit in his office and he would tell me HIS problems. “This is interesting” I thought to myself, but I’m paying for this, and getting nowhere (he doesn’t even seem to be getting better after spilling his problems to me). The headaches continued and now I was experiencing seizures. The psychologist, in one of his clearer moments, finally referred me to a neurologist. The neurologist also felt I was fine, but he would order a CT scan to ease my mind. Finally, there was a doctor who was willing to humor me, even though he just wanted to prove me wrong. We proceeded with the first of what would be a long series of scans. This was the beginning of my mistrust for the medical community, and my first experience with self-advocacy, which later would prove useful in advocating for my children.

The final diagnosis: brain tumor. The next week would be life altering. I was put through a series of tests, from physical to psychological to get a pre-surgery evaluation. The same testing would be performed following surgery to see how the surgery had affected my abilities.  Although the surgery was lengthy, the tumor turned out to be benign and no further treatment following the initial recovery would be necessary. This is what they tell you, and perhaps it’s true for many people. But trauma to the brain comes in many forms from traumatic brain injury to surgery, and the recovery process continues today, decades later. During or shortly after the surgery I experienced a stroke which I did not find out about until many years later. Due to the brain trauma I was unable to feel emotions. I knew on an intellectual level that I SHOULD feel, but I could not actually feel emotion. I felt no sadness, no anger, no happiness, nothing. This soon passed and was followed by intense feelings of anger, depression, and fear.

After my ten day stay in the hospital I was able to return home, ninety pounds, bald and swollen to finish recovering, with much help from my family. I would return to the hospital with meningitis a week later. It was on the trip home from this hospital stay that I first realized all I have taken for granted. Ordinary things caught my attention and I realized how lucky most of us are to be able to do the ordinary, mundane, boring, tedious every day things we do. I noticed construction workers with jack hammers able to work incredibly hard, men on top of tall buildings creating new sky scrapers, children walking along side their mothers picking up leaves from the ground, people riding bicycles, walking their dogs and driving cars. The grass was greener, the sky bluer, the clouds more pronounced, and I was in awe. I remember thinking that if I ever recovered I would appreciate life much more, spend more quality time with my children, family and friends, stop to smell the roses, and help others to see all that is perfect with the world. The truth is it would take me a long time to recover and many more years to learn to appreciate all I had in spite of the small deficits. Many people close to me don’t know that I have forgotten large portions of my life, especially my elementary through high school years. Math has become more difficult, and my artistic skills have been lost, although my appreciation of art remains. It takes me longer to comprehend what I read, and I continue to have weakness on one side, but I’ve learned to adapt and no one really notices these things about me.

It is because of this experience that I first thought of welcoming children with special needs into my life. Meeting Melissa, as I’ve said before was life changing, and she has become my greatest teacher. I admire her attitude, unconditional love, fighting spirit and love for life. She is much more of a survivor than I ever was. She refused to give up where I would weary of fighting. She adapted where I was stagnant, was brave where I was fearful, and was happy where I was miserable. She has taught me more than words can express, and showed me how to love, laugh and appreciate life again. My challenges have made me stronger and happier, and I’ve learned not to take anything for granted. I truly appreciate and am grateful for each day that I wake up and know I am incredibly blessed.

Many blessings,

Pam

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