From:"Chris Kranenberg" kranenberg@earthlink.net
Sent: July 10, 2006

While glancing at the list of stories within the Angioma Alliance web site, I was first intrigued by the small amount of content; twenty-six submitted writings from April 2003 through May 2006.  But, after a little consideration the lack of shared documented experiences is plausible given the statistics of cerebral cavernous malformations (CCMs) occurring in the world population.  According to the National Institute of Health, approximately 0.5% (one out of two hundred) of the world population have CCMs and many of these affected people will never have any symptoms even of blood vessel rupture occurs.  One statistic stated from a neurosurgeon claimed of the 0.5% who have CCMs, about 1% are permanently affected due to blood vessel ruptures.  This means 0.005% of the world population or one out of twenty thousand people experience these life altering changes due to ruptured CCMs.

Whatever the true statistics are, the fact remains for those who have suffered from CCMs and other cerebral malformations that permanently affect life quality, it’s clear these affected people are in the extreme minority.  After reading most of the posted stories on this web site, the individual circumstances and medical experiences vary but there is a common thread among every story.  However, this commonality is not limited to CCM patients but rather to all people who suffer from chronic illnesses.

Each specific illness has some kind of support group to help those afflicted develop a relationship with others who understand firsthand the issues.  No one outside of the circle can be expected to fully comprehend because it is only by direct experience that one can.  For the few humans who have traveled to the Moon, how can they related their experiences and obtain full understanding from everyone else?  It’s not possible.  Therefore, there is a real sense of isolation and being part of a scattered sub-culture separated from the normal world due to experiences and physical limitations.  A support group centralizes the scattered members of the sub-culture thus forming an environment of understanding and compassion.  These two key elements, understanding and compassion, require a substantial amount of effort and commitment for those who have good health.  For many of the afflicted most of their life is not with a support group but in the normal world.  This is what surgeons, therapists and families want; to be integrated back into normal society.  However, given the typical drastic change in life quality due to illness affects, it’s very difficult for the patient to adjust and accept these changes without duress.  And since there are changes in the physical, cognitive, and/or emotional attributes of the patient, former relationships will change.  It’s at this point when the patient finds out who true family and friends are.

Physical afflictions have been a part of humankind since the beginning.  So, it must be kept in mind that you are not the first or last to experience this segment of life.  Many in underdeveloped countries who have suffered ruptured CCMs or other illnesses will not have the option of quality medical care so this is something to think about for those who have had the good fortune of modern medical assistance.  Therefore, it’s up to each of you to accept the changes and live with them the best you can and understand that not everyone around you who is healthy will be understanding, patient, and compassionate.  This suggestion does not imply to become stagnant or give up on trying to improve your quality of life but you must be realistic about your condition and accept things as they are for the moment or constant torment will abide.  The long term goal is to reach a sense of peace within yourself by all means possible, because when there is a sense of peace within you, it will not matter who is uncompassionate or impatient because you have a peaceful understanding of their plausible shortcomings.  Those in your life who unconditionally honor your situation and remain by your side are priceless.

To give this perspective not having experienced a life altering illness would be hypocritical.  However, I have suffered from an acute CCM rupture, underwent surgery, experienced total left side paralysis below the neck, participated in physical rehabilitation, experienced post surgery seizures, and have residual partial left leg paralysis.  But, much worse than the physical setbacks were the disintegration of my marriage and the abandonment of many friends.  It’s a world exclusively for the healthy.  However, I view this life changing event as a test for all involved including myself, and slowly I’m coming to terms with all that’s happened over the past three years and realize this will not last forever.

Chris Kranenberg