It started off with the Walk n Wheel in front of the Latham Hotel at 17th and Walnut. We gathered together and walked all the way to the Philadelphia Art Museum, banner in hand and chanting, “Join the crusade, raise awareness-Arachnoid cyst awareness!” The best moment had to be when a woman shouted, “How many people are diagnosed with this thing?” The idea was to get attention, and I feel we did just that!

Later that night 50 of our members along with world renowned neurosurgeon, Dr Leslie Sutton, psychiatrist Dr Clifford Kuhn and 5 nurses, met in the White Dog Cafe, just steps away from the hospitals University of Penn and Children’s Hospital of Philadelphia. There we had 6 presentations–two from doctors, two from family members of arachnoid cyst patients and two from arachnoid cyst patients themselves, hoping this would cover all sides of what it is like to deal with an arachnoid cyst. Dr Leslie Sutton opened the conference with his presentation discussing what an arachnoid cyst really is and the types of surgical intervention that are needed. Next we had Helena, who had traveled all the way from London to be there, discuss what it is like dealing with the National Health System in the UK, and how the NHS have not acknowledged or treated her arachnoid cysts. We then were moved to tears by Genevieve’s video presentation about her 6 year old son Jack’s journey so far with his arachnoid cyst. Later we had author Jana Cox show clips from her award winning play, “Dream Child”, Mark Collings who came to discuss visual problems associated with arachnoid cysts and we ended with Dr Clifford Kuhn who discussed how to find the humor in the midst of disaster.

Did we have hundreds and hundreds of attendees? No, but I think good things come in small packages, and the intent was to get people thinking and talking about arachnoid cysts, and that is what we did. Our event space was sold out and we even had extra people standing throughout at the back by the door. The wait staff were even listening, and throughout the evening other diners at the White Dog came by and listened–we definitely raised some awareness on November 6th! To see people on the edge of their seat with their eyes glued to the presenters inspired hope–hope that more people will one day stop and listen!

Here is a slideshow of some of the images from the Walk n Wheel event, and a link to the images on our ACA Network.

We will be announcing the 2011 Arachnoid Cyst Awareness Conference soon! What I can tell you so far is it will be in Utah in September!!!!

http://arachnoidcyst1.com
http://arachnoidcystnetwork.com/acanetwork/
http://arachnoidcysttv.com
http://arachnoidcystpetition.com

Wynford wasn’t just a voice teacher to me, he was my friend. When I was going through my own illness back in 2003 he always kept in touch and wanted to know about my health. He called me after every single one of my surgeries. I was standing at a precipice of giving up, and he saved me from what would have been a catastrophic mistake.

When I arrived back in England after my many surgeries and grueling hospital stays, I was relieved to see Wynford. I was at my lowest state, but he never gave up on me and never stopped encouraging me to keep on going.

I will never forget how he conducted me through the recording of my first CD, Five Songs in the summer of 2004. I wasn’t well at all physically and anyone could tell. Towards the end of the recording I was about to throw the towel in, but Wynford as his optimistic self told me, “You can do this, just look at me and I will get you through it.” And he did. But unfortunately over the next few years, even though I wanted to have the classical singing career we both worked so hard on me achieving, an endless amount of health problems occurred forcing me to put it aside and “get better”. By late 2007, I had become a recluse because I had become confined to a wheelchair, but still Wynford would arrange lessons and suggest musical opportunities, again as his cheerful self. I can’t help but think now how I let him down. I wish I could have pulled myself together and just got on with it, but I never did.

Wynford and I had many great long chats since then, but about 6 months ago I stopped hearing from him. I assumed he went on a prolonged holiday in Spain and was happily playing golf, but I couldn’t have been more wrong. After many attempts at trying to get in touch, I found out that he was suffering from Pancreatic Cancer and had a few surgeries as well. So again, I was reminded how cruel life could be. Knowing what a vicious disease Cancer is, it was the last thing anyone would want a wonderful person such as Wynford to go through. I still haven’t got my head around it, and am devastated he had to spend his last 6 months suffering. Just the other day I wrote him saying, “Just keep listening to great music, that will get you through this.” At times like these that is all anyone can do– comfort yourself with music.

During these past two months the world has mourned the losses of many greats: Eunice Shriver, Ted Kennedy Sr, Patrick Swayze and now Wynford Evans.

The owl whose night-bound eyes are blind unto the day cannot unveil the mystery of light.

If you would indeed behold the spirit of death, open your heart wide unto the body of life. For life and death are one, even as the river and the sea are one.

In the depth of your hopes and desires lies your silent knowledge of the beyond;
And like seeds dreaming beneath the snow your heart dreams of spring.
Trust the dreams, for in them is hidden the gate to eternity.
Your fear, of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honor.

Is the not joyful not Joyful beneath his trembling, that he shall wear the mark of the king?

Yet is he not more mindful of his trembling?

For what is it to die but to stand naked in the wind and to melt into the sun?

And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?

Only the river of only when you drink from silence shall you indeed sing.
And when you have reached the mountaintop, then you shall begin to climb.
And when the earth shall claim your limbs, then shall you truly dance.

Kahlil Gibran

Last night I had the most wonderful dream, which is quite odd, since I am constantly having nightmares. In this dream I was checking into an enormous Vatican style building with the most gorgeous gardens surrounding it. I kept asking my friend to come to the window and look how beautiful it was. Many people were walking around the grounds, but none were coming inside. Later on in my dream, while wandering the building, I lost my way. I was greeted by a young priest who led me to this sort of check in counter. There was another priest, one I actually knew in real life, although in my dream he was aged by 30 years or so. He knew I recognized him and I knew he recognized me, but neither of us said anything. I asked for him to point the way to my room, and he said, “Those rooms are scattered all around the building. I don’t know which one is yours.” The young priest and I decided to keep looking, but then suddenly I was back at the window of my room asking my friend to look out the window again. I just remember it being so beautiful. I didn’t realize it was a dream because it was so vivid. Then my dogs came through the back door and I woke up. Maybe heaven is wherever our mind goes to when we die. I don’t know, but I would love to go back to that building and finally be able to walk into the garden.

Unfortunately a friend from back then, Lori, just died 3 days ago, and I found this out yesterday. I have so many memories of this person because we were always around each other my freshman and sophomore years of university–we shared some funny times and some depressing times. Our fathers both died 10 days apart which we both found to be somewhat freaky. When my dad died, Lori said, “I don’t know how you could be sitting in class right now because if that happened to me I wouldn’t be able to survive.” Then 10 days later she was going through the exact same thing. The summer after this we were both working for this music therapy conference–about 40 people came over to Immaculata from Japan and we had to look after them. It was one bizarre year for us.

Lori and I both worked at Camilla hall and she really helped me out when I got yelled at for not wearing the appropriate white trousers. She went and bought me a pair in which an elderly nun immediately vomited on. We both laughed.

I remember Lori making sure I was OK after I found out my cousin was killed in a car crash that following semester. She was a good friend. I am saddened that so many I have known have left this world too soon. Lori was an extremely talented poet and pianist. One of my favorite memories of her was when we were eating our usual geriatric meal in the cafeteria, I was talking about hair frizz and different methods to avoid this, and out of the blue she shouted, “Mandarin friend?!??!” You had to be there.

I feel so sad that she died all alone…no one should die all alone…no one…

Immediately after my injection I started to feel lightheaded and out of it. The next day I was so tired I couldn’t even move, and now four days later it isn’t letting up. I called the duty doctor who says it is the cortisone injection and nothing to do with my blood. He says it will fade off in a little while. It can take over a week for this side effect to go away, which leads me to this question: Why did the rheumatologist tell me there were no side effects? I asked about 3 times before the injection and she said no! That is just bull shit. What did she desperately want me to have it? Besides it being extremely painful, now it has knocked me down for almost 5 days!

Feel free to use this comment area as a place to discuss your thoughts.