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Picture worth 1000 words...

When I took this photo, I figured that no one would ever really believe that it was a true picture of the sky that morning reflecting on the river. There were no filters used, no fancy touch ups or computer alterations done to it (who knows, that may have made it even better…ha!) but I only shoot what I see. It was simply brilliant. I had watched the entire sunrise develop and I was fortunate enough to photograph the whole thing as it transpired. I’ve never seen another morning like that again.

Then I realized to myself, there are always doubters in this world. People who question if something is real. Did you really shoot that picture? Are you sure it wasn’t “altered” in any way? How can you prove that the sky was actually that red as you watched the sun come up that morning? So I decided to take another picture that would give me a little security. It is not as aesthetically pleasing to some, but it will certainly show you the incredible sky which I wanted to capture for you. Take a look…

All I did was back it out a little and include our dock in the photo so you could see the contrast in the colors of the sky, the water, the wood and the solitary light still on from overnight on the dock. The whole purpose of these photos is to show you that minor alterations in angles, light, spacing, timing, and composition are everything when it comes to creating what someone is going to interpret from a photograph.

How does this relate to Chronic Lyme Disease? I think it is monumental. I have been fighting this disease for four years now (three years in bed) and I have watched A LOT of television interviews, print media, medical journals with photos of Lyme patients, movies about chronic illnesses of all kinds AND I have a background of 20 years of working in medicine. My point is… I know how a sick person looks when they are not feeling good, when they are putting on a brave face to get through a short period of time like a doctor’s appointment, or when they really do feel well. I know when someone is really suffering or when someone is faking it. I have watched the slow deterioration of the body over time until a person ultimately dies so nothing I see surprises me.

As Lyme Disease and Chronic Lyme Disease are now beginning to come into the public eye, thanks to the many (non-ill or less ill) people who are fighting so tirelessly on our behalf to get the word out about this disease, I believe that there are a few things that we (the bedridden or more severely ill) can do to help them. We can tell our stories and show our pictures when we are not at our “best” so that society can see what this disease really does to people. We can be the faces and bodies of what Chronic Lyme looks like at its worst. I know that this is embarrassing for a lot of people so that is why they don’t want to put their personal lives out there but it is up to us, the REALLY sick ones, to show society how unbelievably devastating this disease is to us and our families.

We need to be willing to expose the photographs of seizures, falling down, needing shower chairs in our tubs and toilet seat risers in our thirties, home IV therapy that we do ourselves, eating our meals in bed because we will pass out if we sit up, going from a cane to a walker to a wheelchair by the time you are 20, having a handicapped placard at 30 years old or younger, not being able to drive and never being able to live alone again if we are going to make an impact on society. The general population needs to understand that managing a pill schedule that includes up to 60-100 pills a day, some with food, some on an empty stomach, some not near others would be confusing for someone who was perfectly healthy, never mind someone whose hands have tremors and their mind is in an utter fog! Those are the photos that society needs to see if they are to truly understand the devastation of this disease.

I will never forget how excited I have always been when some news station or if a national program is going to cover something on Lyme Disease. I get all prepared for new information, cutting edge medicine or research that has been found or even a realistic picture of what a Chronic Lyme patient looks like but that’s not what I get. There is usually a panel of one or two doctors, the interviewer, a Lyme patient who looks like a model that feels perfectly fine who drove herself there that is not allowed to say more than 35 words throughout the discussion and then within 5 minutes, it is over. This is not helping our fight. When it is over, I am left deflated saying, “She didn’t look like me, trapped in my bed for three years!” To the general public, that story just went in one ear and out the other as they ate their dinner.

My suggestion to the Chronic Lyme community is that if our words are not getting the job done then maybe our PICTURES should try getting the job done. They are supposedly worth a thousand words right? We should stop looking all made up and beautiful at these interviews. We should STOP putting on our “brave faces” in front of these TV cameras so we don’t cry in public. We are suffering and there is nothing to be ashamed about. We should look like we always do…if that means hair in a pony tail or baseball cap, no make-up to show the true circles under your eyes from not sleeping, pajamas or sweats because that’s all you fit into due to the new medications they put you on and you’re all swollen, run a brush over your teeth because that’s all you have the arm strength to do today, take your 30 pills and go to the interview because that’s the best you can do all thanks to a little tick bite. Don’t be ashamed, be sick and be proud of your fight!

Even better, ask them to come to you so you can stay in your bed and not suffer the pain, dizziness, nausea, headache, photophobia, noise, smells, chemical sensitivities and it will also not take you three days to recover from having to go out of the house in the first place! That way you won’t have to bother someone for a ride because you’re not driving right now due to your seizures, you can’t climb stairs so their building better have an elevator and do they have handicapped parking because you can only walk about 50 feet at a time before you have to stop and catch your breath ya know? Did they know all that when they booked YOU as their “talent” for today? Oh no, they didn’t even think of ANY of that because they know nothing about your disease and how seriously ill you really are did they? It is up to you to think about all of this stuff to make the interview happen because you are the one who wants to get the word about Lyme Disease out there so you had to beg the news station for the interview in the first place right? Thankfully, not all news stations are like that but some Lyme advocates have struggled for years to be heard.

Coming full circle in this blog, I just want to say that someone was criticizing Yolanda Foster the other day about how many photos she is putting up on Instagram, Facebook and social media in general regarding her disease and Lyme Awareness as a whole. They talked about how her looks have really (paraphrasing) deteriorated, been affected, gone downhill, etc since being stricken with this disease. I wanted to climb through my computer and strangle the author. Who would have the audacity to say something like that to a sick person? Could you walk up to someone with cancer who was losing their hair and say, “Gee, you’re not looking as hot as you used to these days. Damn shame.” You would likely be beaten to the ground by every respectable male in the closest vicinity. At least, I hope you would.

That woman has used her photos to promote awareness of this disease more than any other celebrity who has been stricken with it and we are simply blessed that she chose to be our voice. Without a moment’s thought she said, “I have been given this disease but I can do something good with my burden. I can help others by sharing my story and how I fight it.” I have never even seen an episode of her show but I have tried some of the treatments she has done (she has more funds than I do). She will always be spoken of in my highest regards. That is a woman of courage. There are so many celebrities that have had this disease that if each one of them were as dedicated to the cause as Yolanda, I think we would be well on our way to helping a good portion of the people who are currently ill in the United States.

It’s Lyme Disease Awareness Month everyone. Consider taking some photos if you are stricken with this awful disease and start circulating them on social media. If society sees what this disease has done to your lives instead of just hearing “blahblahblah needs more money” then maybe they will begin to see us as people and not just an invisible illness. It’s all in the angle of your Lyme Lens.

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