Wednesday, February 15, 2012

Hope Springs Eternal

I'm a 49 year old man, yet I feel like  newborn child.  The diagnoses and recognition of my AgCC, while only the beginning, has opened doors for me that I'd always hoped, but never imagined possible.  I'm not only learning about resources with this, but communicating with parents of an AgCC/ACC child.  I can't stop thinking how blessed they are, to have an early diagnoses.  While I don't dwell on what "could have been", I wonder how it might have been different, had I been born today with this diagnoses.

We often second guess life, thinking "this should have happened to me" or "this shouldn't" etc...but we often never stop to think of the implication of that belief.  For example...

I have been dealing with developmental/behavioral/cognitive issues all my life.  The first diagnoses was ADD (well LONG before they called it that, in my childhood they called it "hyperactivity disorder", and as I matured, my problems manifested in all sort of ways...Focus, sense of self, personal responsibility, social communication.  One after another I had diagnoses after diagnoses (misdiagnoses) that never offered any long term help.  This is, to be fair, largely because, even until recent weeks and months, I've lacked an appropriate and accurate "internal language" to relate to doctors what was going on.

Back to my example:

I came to live in SoCal 4 years ago, because I was suffering with Hepatitis C, and was just getting sicker and sicker.  A new friend, who turns out is more sister than friend invited me here, to help get me well.  In the beginning of all my medical tests my neurologist performed a brain and brainstem scan, and I was diagnosed with AgCC.  Everything changed.


I think I grew up in a family largely in denial about mental, emotional, behavioral and social problems, that believed "there was no such thing as mental illness, just moral weakness." (A very common belief for the time I grew up in.) I'd been estranged from them for so long, I don't really know if this is what they thought, just what I remember and believe.

I have walked through life thinking I was bad, wrong, weak, not as good as everyone else, I felt broken and not able to communicate but never understood why (now I do thank God.)  Within minutes of reading the diagnoses, years of shame, guilt, and self hatred began to wither away.  In its place I now know that I am normal, my normal.  There are things I can do extremely well, and there are things I can improve but will always lag behind...and  I love me, I accept me, God made me perfect in every way.

I was very very sick with Hep C (now I am virus free and healthy through chemo and the love and prayers of friends.)  Had I not been, had it "shouldn't have happened to me", I'd never have come to SoCal, never gotten the high quality medical treatment I needed, and never  would ever have known why I am who and what I am.  I am so grateful.  Pain may be a given, but suffering is optional.

Love,
Just Joe

No comments:

Post a Comment

Post a Comment