Sunday, July 29, 2012

On a lighter note...

There have been a few project related things going on in my life lately and I have been having lots of fun with them.  The big one is that we bought a new home and have been moving in, making a few changes here and there, and generally just making it our own which is always fun.

Ball of Clay - 6lbs
Me throwing a large bowl
Another, more just-for-me project I've been working on is pottery.  Lisa introduced me to it in January and once I felt settled here, I decided to give it a try.  I started taking classes about a month ago.  The owner of the pottery studio, Doug, is a very nice and talented man who has a lot of knowledge, experience, and patience.  He makes it all look so easy, but in reality it takes concentration, strength, and some vision about where you want to take the clay once you get it on the wheel or slab.  So far I have been focusing on the wheel and I've made mostly vases and bowls. 

The three items I "threw" (pottery talk for making something on the wheel) in my first class are the only items that have gone through the whole process so far.  The first week I made two bowls and a vase which were created from little balls of clay, about 3 to 4 lbs each.

Lifting the clay to add size and shape
From a ball of clay to a bowl
The next week I trimmed all of them, which involves putting one item at a time on the wheel and using cutting tools to shape it.  In this, you have to understand the inside shape and follow it on the outside, then create a "foot" which is the underside that it rests on. 

After this process is complete and the item is shaped to satisfaction, it is bisque fired.  I can't tell you any more about that because I am not involved in that part. 

The next step is to glaze the item.  This gives it color.  One odd thing about the glaze is that when you put it on, there is no hint whatsoever as to the color it will actually be after it is fired, which is the final step.  The glaze is chalky in texture and the color has a muted dull look which feels and looks nothing like the finished product.  The vase below on the left is glazed but you don't see the true color until after its fired (see picture below on the right).  You can see what I mean, they look nothing alike.

Glazed but not yet fired
Finished vase
This has been a great experience for me and I look forward to making many more projects!  It is a place and activity that allows me to focus solely on the work at hand.  I love that I start out with one idea in mind and halfway through working with the clay on the wheel, I can change my plan and make something totally different.  The ability to change the shape or take it from a bowl to a vase all on a whim (well, sort of, it still takes some planning) is fun!  I even like the fact that some turn out very symmetrical while others are a bit off kilter yet somehow they all sit balanced and each have their own beauty to them.  Now I just have to find places to use or display them all in my new house!

Thursday, July 26, 2012


Last night Dan and I went down to the beach for a swim and some boogie boarding in the waves.  I was just feeling the need to connect with the ocean, feel the water surround me, and it was wonderful!  Out in the distance, to the southeast, there were white clouds that had the look of the white water from the crashing waves as they push their way towards shore.  The clouds were lit by the sun as it sunk in the western sky so they had that white, puffy, golden look to them.  I could see that it was raining from the bottom of the clouds and halfway to shore, where the clouds began to lengthen into a smoother pattern, there was a rainbow streaming from the clouds to the ocean below.  It was a beautiful site and as I got caught in the waves, I could feel the power of the water as it pulled and pushed and seemed to force its will on everything that it touched.  Yet, at the same time, when I just gave myself up to it and floated on the surface, bobbing up with the swells and down again as they passed below me, allowing it to take me where it would, I could feel the oneness and peace that nature provides when it is observed and not fought against.

In some ways, it reminded me of the struggle I am in with ALS.  There is a part of me that wants to fight with everything I've got and I am so frustrated and upset that there are so few options available.  I am not one to sit idle while injustice is happening around me, so when I am the one faced with this unjustifiable disease it makes me feel like such a failure to not be able to find an effective tool to fight with!   When the only options seem to be generic in their treatment, meaning that they are not really designed to fight ALS specifically, but they seem more geared to helping one resolve emotional and/or life issues which some believe may be the cause of the illness or they are designed to treat symptoms which may or may not be related to the disease, I just feel lost.  Its not a clear answer.  To me, it feels like being tossed around in the waves and not knowing which way is up until you either hit the sand or break the surface just to be hit by another wave.   Then at other times, I feel the peace of just floating along doing nothing as I just allow myself to be taken on the journey and let it unfold as it will.  However, as I feel changes happening in my body, the need to move into action strengthens, to find answers, but I want real answers, real positive results and I just don't see the door to them in front of me.  You can only imagine how incredibly frustrating that is!

Friday, July 13, 2012


I find myself amazed at the fact that ALS was first diagnosed over 150 years ago and today we still have no cure, no treatment, and very little knowledge about a cause.  How is this possible with today's knowledge, scientific and medical advancements, and the technologies available?  What is known is that there seems to be no rhyme or reason to who gets it.  They do know there is a genetic predisposition to ALS in some families (familial ALS) but others, like myself, have the sporadic condition.  People from all cultures and regions around the world have been diagnosed with ALS.  Both men and women are diagnosed with ALS.  While most people are over 50 years old when diagnosed with ALS, there are people in their 30s and 40s (I am 42) and some as young as early 20s (Stephen Hawking was diagnosed at 21). 

There are people who claim to have found treatments and/or cures for ALS using alternative methods but there seems to be no consistency to the claims.  One person found help with this treatment, another with that, and yet someone else swears by this and that combined.  I am not at all opposed to alternative medicine but there seems to be no supporting data to say "this actually works".  For example, I recently saw a holistic medical doctor who put together a plan for treatment that included a number of different methodologies.  One is an IV protocol created and administered by a doctor in the northeast.  It involves IV treatment two times a week for 12 weeks and costs $10,000 or more.  The doctor in the northeast claims that 75% of her ALS patients have delayed onset of symptoms with the treatment.  On the other hand, one of her former patients wrote that while the treatment may have offered some delay to their symptoms, they wished they had spent the $18,000 on doing things with their family while they were feeling well enough to do so.  This kind of information leaves me feeling conflicted. 

On one side, the medical community has no cure for ALS and no proven treatment to drastically delay symptoms.  One of the reasons for this seems to be that each person with ALS has a different timeline and progression pattern.  While there are similarities that can be followed and documented, patients are different and experience ALS in their own way.  On the other side, alternative treatments differ greatly and include (but are not limited to) IV protocols, detoxification of harmful toxins in the body including removing filings from teeth, changes in diet and hormones, taking specific supplements and vitamins, hypnosis, acupuncture, reducing exposure to EMF (electro magnetic field), prayer, and other metaphysical healing methods too complicated to explain.  So, what does one do?

With a disease like cancer, there are proven medical treatments and relief for symptoms of both the disease and the side effects of the treatments.  They are not 100% effective and often, I understand, the treatment makes patients feel worse than the disease on its own.  However, the thing I am most envious of is the hope.  Over the years, the medical treatments and survival rates for cancer patients have greatly improved through research, trials, practice, and whatever else it takes to get that kind of progress.  With ALS, after 150 years, there is still only one drug available to slow the disease progression and that only works for some people and the delay is generally only measured in months rather than years or decades. 

I want to believe there is something out there that can help me and the thousands of others suffering from ALS.  How do I do that when there is no hope offered by the medical community?  Do I try the alternative invasive therapies that have no proven success?  Do I try one or more of the noninvasive ones?  Do I just go for broke and try them all, proof or not?  The truth is that I find myself inclined to not try anything outside my experience because it can all be so overwhelming.  Also, at the moment, I feel relatively good and I do not want to do anything that will change that in a negative way.  Quality of life is extremely important to me and right now life is good!

There is just so much to consider when looking at all the options and it is so difficult to know what the best decision is.  While I weigh the treatment options available, I believe the best medicine for me is living life the best I can every day, smiling and laughing every day, staying active every day, loving and being loved every day, looking forward to the future every day, and sharing a glass of champagne with my husband every night to toast the day that has passed. 

Thursday, July 5, 2012

A good beach day...

One of the things I like best about living in Florida is the beach.  I love walking hand in hand with Dan on the beach every morning; the feel of the sand under my feet, the waves crashing on my legs as we walk through the shallow water, the warm temperature of the ocean at just about any time of day, playing ball with Harly and seeing how happy it makes him, the fun surprise of finding a shell that's still complete or tossing a stranded starfish back in to give it a chance to make it, the little fish that swim all around my feet, and the special treat of seeing dolphins now and then. 

Today was a good beach day.  It started with a nice walk down the beach with Dan and Harly, as most of our days begin.  On our walk, we saw half a dozen dolphin cruising along just outside the waves which always makes me happy.  I found a pretty shell to add to my growing collection.  We stopped to meet a few dogs (and their owners).  We played ball with Harly.  The water was warm and the sun was warmer so I went for a swim before we left, something I love to do.  Later in the afternoon, on our second walk of the day, there was a beach cleanup going on organized by a group called  We signed in and picked up trash (mostly cigarette butts, gum, and hair ties but there was also a sock, part of a tire, a single fin, and lots of firework trash) along the way.   All in all, it was a really good beach day.