In 1999 I painted this, called "Lantern." It is painted in oils and measures 24 x 32 ins. I had already had MSi for about fifteen years but it was very benign and up until then I had very little residual deficits. I was still able to hill-walk many miles and a few years previously, I had cycled by myself all round the south of France and down into Italy. 1999 marked a turning point, however. In December of the previous year I had gone down with what I assumed to be influenza but after that I just couldn't clear it, I developed asthmai and found from then on that I just couldn't run. In fact, I couldn't walk more than a few miles. I had no difficulty in painting, though, so with my optimistic nature, I just thought it would pass.
The next year, sometime in August, I was taking some prints to the main post office to send abroad and when I had finished found there was no way I could walk home, only about half a mile, so I had to phone David to ask him to collect me. Actually, I asked him to bring by bicycle down so that I could cycle home! I couldn't even lift my leg to get on it and by the next morning I could hardly walk at all. This was the turning point from relapsing remitting disease to secondary progressive. I did recover somewhat from this but only enough to be able to walk down to the river and that in stages. I didn't see what was happening, though. I knew that I had originally developed MS when in my early twenties but by the age of 40 my brain was so addled that I just didn't realise what was wrong with me. I could think that it can't possibly be MS because the symptoms are all wrong, whereas now I wonder how I could be so stupid.
The following year I started doing some studies for a commission for Cunard, to do six paintings for the new Queen Mary 2 cruise ship. I finished the actual paintings in 2003 and they were the last things I was able to paint before my right arm gave up completely. It was accepted and paid for, but I am not remotely happy with what I did. It looks much more like just a Mickey mouse painting and has no life in it. This was the last of six finished and the others are maybe marginally better. I remember painting them all by leaning on a support which David made and attached to my easel for me. All the while he knew what was wrong but didn't know at the time that there was a cure. He was worried out of his mind but I was completely oblivious, laughing at the stupid mistakes I made. I got him to go up to London to buy some spray varnish because my hand as too weak to brush it on. I didn't realise how he was feeling on the journey and I am so sorry about the way I treated him at that time. This painting was the last one I finished before my hand gave out completely. Yes, Cunard accepted it but to me it looks so stilted and cartoony. Some people paint like that but not me. The colours are unusually dull as well, even though I was using the best pigments available, Old Holland, made in the Netherlands for three hundred years. This was the last painting I did before my hand gave out completely. I had previously experienced looking down at my feet but being able to do nothing with them, now it was my right hand and this time after over six months it was not getting better, whereas before, various bits of me had started working again after about three weeks at most. I was living life in a bit of a daze, so actually not particularly bothered, believe it or not.
Well, it is recognisable as being an iris but looks almost cartoony, lacking my normal rich hues and textures, good as an illustration , if someone wants a three foot tall illustration, but not much else. My sweet but worried husband made me a rest to attach to my easel and lean on, otherwise I would have been unable to finish it, or the five other paintings.
After a period of not being able to paint at all and having to listen to annoying suggestions that I might take up foot painting or mouth painting, I started abxi and two weeks later, when I had got over the delirium, I tried to do something with my right hand. All those early paintings were promptly binned, thinking that if I didn't get any better, I would have to put my mind to doing something else, but eventually I managed to produce this watercolour, called Blue Cave and measuring 21 x 28 ins. The colours are becoming more intense once more:
This June, 2008, I finished the panting below, named Two Lanterns and measuring 34 x 52 ins. My colours, light and life are definitely back and I painted it completely free-hand, not measuring or resting my hand on the support David made over six years ago. Although he made it, he is delighted that I no longer need it and so am I.
___________________________________________________________
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent. Still improving and no relapses since starting. EDSSii was 7, but most days I could pass for as good as new.
»
- Sarah's blog
- Login or register to post comments
- Email this page
- Printer-friendly version
Well I suppose I know your
___________________________________________________________
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
Your story, punctuated by
Your story, punctuated by your artwork, is moving to say the least.
Paint on! :-)
Timaca
___________________________________________________________
Dx lyme disease 3/05. Dx HHV-6, EBVi, VZV, and HSV1 6/07. Dx with CPni 5/08 and enterovirus 2/09. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyi bidi for Cpn, acyclovir for viruses, oxymatrine for enterovirus
So happy to see your
___________________________________________________________
CAPi since 11/06 for Cpni, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsi. Rifampin 600mg daily, Zithromax 500mg daily. NACi 2250mg daily. All other supplementsi. Now Bicillin LA 2.4 mil injection weekly.
LovelyJen
Lovely
Jen
___________________________________________________________
If I have the belief that I can do it, I shall surely acquire the capacity to do it, even if I may not have had it in the beginning.
Mahatma Gandhi
I remember those dark days
I remember those dark days very vividly. I knew exactly what was wrong and the natural history of aggressive SPMSi. I approached despair. I recall going to London to collect some materials from Whitechapel in London and feeling a sense of complete numbness and unreality.
How times have changed! It is just a joy to enter Sarah’s studio and to see her painting, her intelligence and personality restored. It is wonderful to see the end of that fatal insouciance so typical of those with aggressive disease. I’m eternally grateful for the advice of Ram Sriram and Chuck Strattoni who were so helpful.
But it’s sad that the mainstream neurological perception is obtunded. You only have to look at someone with fast SPMS to know that demyelinationi is not the primary or only pathology. The character-changes have an uncanny resemblance to those resulting from intoxication with volatile organic chemicals. The development of a rather meaningless euphoria, inappropriate laughter, emotional lability, vastly increased reaction times: all these are seen both in solvent abuse and in very aggressive MS. This syndrome can be best explained by a constant poisoning of the frontal lobes of the brain. Bacteria often produce toxic volatiles. Other active infectionsi (tuberculosis and pneumococcal pneumonia are examples) tend to produce specific mental states. Apply Occam’s razor. The orthodox view of MS cannot begin to explain this strange frontal lobe syndrome. I have a page on this: http://www.davidwheldon.co.uk/personality-change.html
___________________________________________________________
D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]
Sarah and DavidMy gratitude
Sarah and David
My gratitude to you and Chuck Strattoni will be be part of my day for the rest of my life. Reading Sarah's story is another reminder that there are so many, many people out there who don't know, and some who will never know.
All of us here must stay on this - we who have been where Sarah was, and I was, and more and more of us were - we must spread this knowledge. We are doing it so slowly - but we ARE doing it. Thanks again, Sarah.
Rica
___________________________________________________________
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
Thank you everyone, even
Thank you everyone, even though I still think my Queen Mary thing is not a good painting.
Special thanks must go to David, of course and Stratton and Sriram, but also to Rica who started a year after me, so I have watched her improvements from the beginning, so I suppose she is like a big sister.
Most days I do something to spread the word, even if I want just to paint. It becomes part of my being as it must be also with Rica...................Sarah
An Itinerary in Light and Shadow
___________________________________________________________
I've heard one criterion for
I've heard one criterion for art (as opposed to craft or decoration) is that art reflects the intent of the artist. If you hadn't shown the other images, I'd never have thought there was anything wrong with the Queen Mary piece. If I had been very familiar with your work, I might have wondered why your intention had altered so greatly. I think all the images are vibrant, but perhaps the " cartoony" quality in the Queen Mary II piece is unsatisfying to you because it doesn't reflect your intent?
Did the insouciance that David mentions extend into the realm of your art? In other words, were the character-changes partly responsible? Did your smaller pieces and sketches show the same "cartoony" character, even though they required less physical effort? Or perhaps the aridity of that time in your life is reflected in the art?
Certainly I know that my work sometimes reflects my low energy more than it reflects my intent. "There, that's good enough, I have to lay down." is not very good for computer programming, but it is probably even worse for art. After all, my work only has to perform. If the code is inelegant, I am the only who knows. Still, I go back and look at the applications I designed and I wonder, "What was I thinking?"
I am very glad that your art is back expressing your intent, at any rate. What a miracle!
___________________________________________________________
Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Began rifampin trial 1/14/09
Currently: on intermittent
Ron, I think you are
Ron, I think you are correct: it doesn't reflect my normal intent but I didn't realise it then and was just happy that I had managed to complete it and the other five. Character changes at the time must be at least partly responsible otherwise I would have seen what I had done and seen that it was nothing like what I normally do. The sketches were done about a year before starting on the big ones and they were somewhat better. I think character changes had more to do with it than the aridity of my life because the changes meant that I just didn't recognise it: insouciance reigned and I just didn't see that anything much was wrong with me. I must have driven David to distraction, poor thing..................Sarah
An Itinerary in Light and Shadow
___________________________________________________________
Sarah, thanks for sharing
___________________________________________________________
6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin
Sarah, your paintings show
Sarah, your paintings show the most inner part of your beautiful personality. You have been so helpful to others who are in the midst of their battle with msi. Even if that is not my diagnosis at this time, it reminds me we all share one goal in life and that is to be kinder to one another and respect eachothers talents. Your paintings are a true talent.
Thanks for sharing them.
___________________________________________________________
started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell. Nitro patch, restore gut, vit.d3, supplementsi, T3, Monolaurin, 1/13/10 biofilm protocol, 1/10 Amoxicillini 500mgs. 1/23 Azith.
The thing that looks strange
In any case, as long as we're sharing art, here's a 'painting' I did last winter, using some very different technologies.
Norman, your painting is
___________________________________________________________
minocycline, azithromycine, metronidazolei 2007-2009, infrared sauna, chelation for lead poisoning, ursodiol, nitroglycerine patches for muscle pain, insomnia, interstitial cystitisi, sinus, dry eyes, stiff neck, veins, thyroid, TMJ.
Thank you Louise and Horses:
Thank you Louise and Horses: I'm not really blushing.
Norman, that "painting" is good: I like the flow of the shoreline and the darkness of the trees behind. I would like to see it as a real painting, though and not as just a photoshoped image. How about it? Incidentally, I was looking at Frederic Church's Iceberg this morning. It is extraordinarily good, but I don't suggest you try a painting that big. You are quite right about my fall petal, though. I just didn't see it at the time.................Sarah
An Itinerary in Light and Shadow
___________________________________________________________
Thanks, Sarah. But even if
With the sun shining into the camera, this particular shot needed such a wide range of exposures that the resulting HDR composite looked unnatural to me. I eventually realized what the overall effect was reminding me of: an oil painting. And I realized why: painters are seldom (if ever) rigorous about painting everything at the exact brightness it is in reality; the main attention is on making each part of the picture clear and vivid, not on getting the relative brightnesses of widely-separated parts of the image precisely correct. So I hit the "make this look like an oil painting" button in GIMP, which tries to render the image as if it were painted with brush strokes. The result still sort of looks unnatural to me -- the relative brightnesses are all wrong -- but I no longer look at it and think it might be an image from another planet, where any moment an alien spaceship might come down and land. Instead it just looks like a painting. (The unearthly original can be seen here.)
Only if you paint from
Only if you paint from life! I rarely do but take large numbers of photographs and work from them, sometimes more than half a dozen at once. I don't blend them all together, though, but keep them separate, then eventually hardly look at them at all but make it all up.
Your enfuse program looks interesting though, but maybe I could do that with photoshop. I certainly could "make something look like an oil painting," in fact, I did do, but it didn't look much like an oil painting, but kind of unnatural as yours does, even more so than the unearthly original. I do like the shoreline and the trees behind and the light behind the trees, though. I might ask you if I could use the photograph to do a pen and ink drawing like this one.................Sarah
An Itinerary in Light and Shadow
___________________________________________________________
You're certainly welcome to
The manipulations done by enfuse are pretty sophisticated. When merging images, it does a more gradual transition between images in regions where the scene varies slowly, and a sharper transition in regions where the scene varies sharply. Photoshop might have the equivalent, but it might not. (I've heard that since Photoshop CS3, it has a very good panorama program; and panorama-making requires some similar techniques. But the task is not quite identical, so having one doesn't necessarily mean it has the other.) Enfuse itself is free software, and has a Windows version, but it's not easy to use. (Well, to be specific, enfuse itself is not hard to use; the difficult part is precisely aligning the images to each other, so that they are suitable as input to enfuse. The companion program 'hugin' that does that has a lot of options; it's easy to get lost.)
For this photo, here are the images that enfuse and hugin started with: 2.jpg; 3.jpg; 4.jpg; 5.jpg; 6.jpg; 7.jpg; 8.jpg. Each shot in that sequence was taken at half the exposure time of the previous shot: the first one had an exposure time of 1/10 second, while the last had an exposure time of 1/640 second.
Thank you Norman. I am
Thank you Norman. I am going to download Enfuse and have pinched all your photos in order to try it out! (Well, when I have the time.)................Sarah
An Itinerary in Light and Shadow
___________________________________________________________
So is this where the
___________________________________________________________
Hunter: Don't think - experiment
Since we have shifted
Since we have shifted somewhat to digital photography,
has anyone heard if the Sony digital camera bodies have improved on their ratings?
My Dad left me a box load of Minolta camera lenses (with non-digital bodies). I have had some mentoring but with these non-digitals but am really waiting for the reports of the Sony digital cameras coming up to speed so that I can get a body and attach my minolta lenses and start having fun with this lenses. Sony bought the minolta attachement format.
Last time I checked the rating on Sony still lagged behind the other digital camera makes. I'm locked into this format as the lenses are an expensive part of the set up.
Louise
___________________________________________________________
6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin
Can't help you there because
Can't help you there because my digital camera is only an Olympus Camedia. My SLRs are totally non digital: I have to scan the slides and it takes ages................Sarah
An Itinerary in Light and Shadow
___________________________________________________________
My mother is in the same
Guess it depends what you
Guess it depends what you want to use it for. I have several telephoto lenses and the latest Sony's still only have the equivalent of ISO 400 at best quality setting. Nikon and Canon have 800, 1600, 3200 for cameras in the same price ranges. I did go to the Consumer Reports site to take a look after asking the question. I looked about a year ago and thought they would have come up to speed by now but in the last 6 months they have 6 new SLR digitals and none of them are equal in this respect to most of the others. I'll look again around the holidays and again next spring.
I do have a nice point and shoot Canon that does remarkably well but I can get wildlife photos very easily if I could just get the telephoto lenses into use.
___________________________________________________________
6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin
Huh? Even Sony's oldest and
How about trying one of
How about trying one of these?................Sarah
An Itinerary in Light and Shadow
___________________________________________________________
Sarah, I am bumping this up
___________________________________________________________
On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
Sarah, A great story and
___________________________________________________________
On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
Wiggy, yes, my attitude at
Wiggy, yes, my attitude at the time probably did keep me going but it made life very dreadful for David!.................Sarah
An Itinerary in Light and Shadow
___________________________________________________________