I have only recently learned of Aaron Anderson's passing. According to his obituary, Aaron died six years ago on this day of September the 22nd in the year 2011, at the age of thirty. Aaron Anderson is the brother of actress, Gillian Anderson, who wrote me the handwritten note (long before her brother passed away) which is posted atop this entry.
At that time, Ms. Anderson and I had a correspondence (via snail mail) re a collection of vignettes that I had written which discussed my own experience of being born and growing up with the medical condition known as Neurofibromatosis Type One — the same neurological disorder (NF) that afflicted her younger brother. Be that as it may, the day after Aaron Anderson passed away, The Telegraph, published a short article which included the following information:
"Aaron was diagnosed with neurofibromatosis when he was just three years old. It is a rare condition with no known cure and causes tumours to grow on nerve tissue, leading to skin and bone abnormalities, but (Gillian) Anderson says that 'it’s questionable as to whether this was related to that. His condition involves tumours but not very often brain tumours, so the fact that he had an inoperable one was shocking and not commonplace. He was getting his PhD at Stanford. He was in the middle of a young life.'"
For a number of years, Gillian Andersen was fairly pro-active in raising awareness re NF, which is how I happened to be in contact with her as well as with her mother, Rosemary Anderson.
During their activism to raise awareness re Neurofibromatosis, the following statements regarding this medical condition on Gillian Anderson's web-site:
When he was three, Aaron was diagnosed as having a medical condition called neurofibromatosis (NF). Suffers can break out in tumours, which dramatically alter their appearance. "It’s been a big part of my parents’ and my life for 12 years," the actress says softly. 'It’s been a major part of my growing up and Aaron’s growing up because of the potential devastation of the disease. It’s a neurological disease. Someone with NF can have tumours that grow on the body inside and on the outside... 'Sometimes it can deform the person - although I shouldn’t use the word deform. It can alter their appearance severely, because you can get large tumors on the face and arms so it becomes more obvious to other people...'
Gillian devotes long hours to promoting NF causes with her mother Rosemary, a computer analyst, who’s founded a clinic for NF patients near the family home in Michigan, USA. They are determined to educate people about this rare illness. 'I guess we want to make people aware that it’s not contagious,' says Gillian, who also has a younger sister called Zoë.
'These people are normal human beings and have this disease that can result in brain damage and brain difficulties. It can also cause death because of the tumors... 'Aaron has been very, very lucky so far. Usually during puberty the disease grows rapidly, but he hasn’t had that problem yet. Aaron has regular check-ups, and so far it’s been relatively uneventful for him.''
As Gillian Anderson has said in these statements, NF is "a neurological disease. Someone with NF can have tumors that grow on the body inside and on the outside... 'Sometimes it can deform the person - although I shouldn’t use the word deform. It can alter their appearance severely, because you can get large tumors on the face and arms so it becomes more obvious to other people...'"
In my NF-themed vignettes, I discuss the inner experience of having this neurological condition;
especially the impact of how the general public has reacted upon their seeing my very visible tumors.
Like Rosemary and Gillian Anderson, I had been "determined to educate people about this rare illness" and to make people aware that it’s not contagious," through my writings.
Moreover, a number of medical professionals have encouraged me to be proactive regarding my consequences of having NF.
Perhaps my learning that today is the anniversary of Aaron Anderson's death, I will consider returning to such an endeavor, but at the moment, as far as my writing goes, I am focusing on an edition of Words In Our Beak Volume One,
that can be put into book stores, gift shops, nature centers, libraries, as well as school; because as of this particular blog posting, Words In Our Beak Volume One's soft-cover format is only available via MagCloud, which has been extremely limiting. This means that at least for now, I have to focus on format issues re the best fit for Words In Our Beak Volume One; and I have to limit my writing efforts towards my series of subsequent volumes, which are already in well-developed draft format.
And, I'll leave it here for today, dear reader, but not without sending out my condolences to the family and friends of the dearly departed Aaron Anderson. Additionally, I send out good wishes to anyone who is dealing with the consequences of having Neurofibromatosis.