The word  “Friend”  can mean varied things to different people.To me it brings up friends of old,like newly found old friends from high school,friends  who have been on journeys with me for extended periods of time. Friends that for whatever reason and I will take the blame for some but not all of lost friends.I have had a strange life,one that has seen much,done much and wasted much.I still have friends that I know I could call up in the middle of the night and come if I should need them.Odd,that except for one none of my children will even do that for me(which I understand)but have to be prodded to do so for their father.Sad,but along life`s long tedious,and turbulent journey no matter how they feel about me,what has this man who has nourished them and given them unconditional love ,what has he done? Never mind,it will soon be over and we will be on another journey together.An adventure of life beginning anew.

What I want to do tonight is thank the many friends who for whatever reason I may never get to meet but are closer in some ways(hell,in many) more than my own childen biological or child not of my body of of my heart.Yes,that one hurts.

These are the friends who I have come to know whatever the real me is,who are from all over the world in the APSFA support group,men,women,young people from all nations some suffering from things I cannot even begin to fathom,pain that while it is with me constantly I know they suffer more.For the most part they have not lived their full lives yet,some have yet to even begin the journey this,I openly say,”I love you”.You have yet to taste or to savor the many varied aspects of life,try not to let this disease become who you are or to define you.You be the ones to define it and spread the word of what we go through..To Richard and Heather for caring enough to call on a regular basis when I was at a place I doubted I would be able to climb out of.To Tina,who for whatever I liken to a Pit Bull who will stop at nothing to bring APS to the forefront and without the information she and others have gathered I would even though diagnosed,let others around me,albeit medical personal or just “so-called ” friends belittle me to make me feel as though I was worth nothing.She is in so many many ways not just a natural leader but someone who should be in public health in a professional way,or in public office.Nothing deters her,nothing gets in her way,and no matter how she may feel she is there to reach out with information or while never out and out sympathy,she because she is we and we are her, with empathy.

To so many who I cannot name,because of endangering them know that I love and care about every one of you who have come into my world and enriched it and kept me here.I must be still here for a reason,I will make sure Dr Besser never lets a day go by without hearing from me.His shoes must be getting uncomfortable by now,because I told him months ago I would not back off.We deserve to be heard,to have someone be our public voice or face.Not just a distorted plot that the TV show House can garner viewers from.Although we take whatever we can get.

From what I have gotten through each and every one of you is not just your own story and some of the horrors that go with this damn disease,but the quiet strength of  someone like one of us who has gone through nine surgeries in nine weeks,yet clings to that hope of life.When you still have a reason to fight,whether it is children,a sick husband,or a cause that draws you together for the strength you need to get up in the morning a face the day no matter if you wish to or not.The depression along with the varied ailments APS causes are many but together we will garner the strength from our “FRIENDS” in our group and find a way to go around the edges of FB,and still manage to get the word out and give one another the that little granule of hope and light we all need no matter if we find friends in what some would call “Strange Places” I have a friend of many years that I found in a decorating forum and imagine my surprise as he is still as close to me as ever and though he too has gone through much and we have evolved,you never know when that person will give you what you need or what you want,be it knowledge,empathy or just a respite from your day to day pain of being not a victim but rather an unwanted spokesperson of a disease you never wanted or asked for no matter you sex,your age or loacation.

To all of you around the globe I have come to know and love,I thank you for being who you are and what you are to me and to everyone you may come into contact with,You,while sick are a friend and fellow spokesperson for what we fight on a daily basis.


Matheson Hammock Park



Image via Wikipedia

Matheson Hammock Park.

    How many of us growing up in the Miami,South Miami,or even the Gables of the 50`s or 60`s before we drove remember  biking to Matheson Hammock Park because that and Tahiti were within biking range of where we lived and we knew we were  free to be who we were.Kids being kids,or for the slightly older a place to be with that special someone,and listen to our portable radios or perhaps someone had driven there and there radio was playing that special song for you and the person you thought you would be with for life and now have trouble remembering their name.Maybe the name is hazy but Matheson Hammock is still the pristine oasis that it was then,the place of our young and teenaged years that we still cling to with the tenacity of hope we refuse to let go of like we do our friends on Facebook who bear little  to the photos in our minds of that special someone.It is the smell ,that briny smell of the water,and seeing the crabs scurrying away,If you were fortunate enough to have a canoe,(before kayaks) you could get close to the mangroves and see a little bit of everything.Every kind of waterfowl, sea life, and if you were really lucky maybe a porpoise. As an  adult I went back and was amazed at how much smaller it was and how changed,yet something still pulled me to a certain tree,how I found it I will never know and there albeit faintly their it was a faint intertwined heart with two sets of forever loves.One is now long gone,the other girl no one knows where and her “forever” love I am still friends with today on Facebook.He is still the same,staunch friend,guard of whomever might try to hurt me and even though he lives across the country I could call him and still be able to cry on his wide shoulders even if it was a problem I still may angst over 50 some odd years later or the rather difficult time I am having now at the end of my journey. All because of a video that was sent to me via another old classmate that realizes that with the destruction of Matheson Hmmock Park is would be not just formalizing the power of the 1% and their being able to do with their money what we can do with but words.No matter! We will always have those memories of summers and of freedom,and of first or young love,or just friendships forever being bound by a gentle lap of waves on a lazy lagoon,the smell of smells that always takes us back to another time,another place,and the songs that we continue to play to take us back to those lazy,hazy,crazy,days of summer,and memories that no matter what happens cannot be erased.

However,for the sake of those who come after us and while those days may never come again let this place be a safe haven for grandparents to show that they too had a youth,they too had dreams,and they too indeed care to see not a memory saved but a small part of the ecosystem of Florida that is quickly disappearing. Why is progress assumed when something valuable is destroyed? Memories last forever in our minds,places do not.