Losing my Sense of Smell

I still don't have my sense of smell back after my traumatic brain injury and I probably never will.  So, I'm learning what it is to live without it. First of all, let's discuss smell in relation to food. As we all have experienced when we had a head cold, not being able to smell deadens us to the flavors in food. All we can taste is what our tongue's taste buds tell us is in it: salty, sweet, sour, bitter and savory. We can't taste nuances in flavors, or detect spices, either. The flavor of the dish, which is the mixing up of all these different ingredients to get the distinctive taste of it, is absent. Like having a perpetual head cold, food now tastes bland and I'm forced to enjoy it by its mouthfeel, temperature both thermally and chemically (i.e. hot peppers), whether it rests well with me and the overall satisfaction it gives me.

But there is more to eating than flavor. Normally, smelling a food when it's cooking prepares us for eating by secreting digestive juices based upon what we've smelled. Without smelling the food beforehand, my body doesn't know what I'm going to eat and therefore my digestive juices lag behind. Eventually, the correct juices start flowing, but then I don't know when I'm full. If I don't stop eating before I'm full, I end up eating too much. Therefore, satiation lags behind, too.

Losing my sense of smell affects me in other ways I didn't fully appreciate until after I lost it. First of all, I've learned that the sense of smell helped me navigate by scent-tracking, like bloodhounds do. I'd sniff the air, recognize a smell, and could tell which direction it was coming from, which oriented me. Also, a smell would draw my attention to things I wouldn't ordinarily notice without it, like a newly cut lawn or the scent of meat cooking on a grill. Now, when I'm walking around an unfamiliar area, I have no scent trail to follow and tend to get disorientated. I have to rely solely on visual and auditory cues to remind me of where I am in orientation to where I've been. Therefore, this grounding sense of smell underlying where I've been is missing and it's a lot harder to find my way back.

The sense of smell also plays a role in perception. When we can't smell, we don't get into the depth of our surroundings. Universal smells based upon human activities such as the diesel exhaust or fireplace smoke, plants such as the sweet scent of jasmine or the cat-pee sent of junipers, animals such as dog poop, a rookery or decomposition, and other common smells overlay one another to form an invisible, particular smell landscape called a smellscape. Each environment has it's own smellscape, making an ocean shore smell different from a forest and a rural area smell different from a city. We subconsciously remember these invisible but powerful smellscapes, which evoke an emotional response. For example, if I stand next to the ocean, I can see the waves, hear them crashing, touch its water and feel its cool, humid breeze against my face, I can fondly remember other times I went to the ocean. But if I can't detect its smellscape, how can I be fully engulfed within the experience? It's almost like I'm not fully there.

Finally, the sense of smell is strongly tied to memory. Before my fall, if I smelled the perfume my mother wore, a vegetable soup like my Grandma made, the smell of a baby's head, fresh paint or cigarette smoke, it would bring to mind the memories attached to those smells. But use it or lose it applies to the brain as well as the body. In time, I know I will forget some of those memories because I am not being reminded of them and will have more difficulty forming new ones because I can't detect the smells associated with them.  

Because I can't smell anything, I don't feel like I'm living life as deeply as I would like. Instead, I'm living in a virtual reality!

My Concussion: fixing my hearing

Shortly after I wrote my one year anniversary blog post, I began researching panic attacks after concussions. I was also missing words when listening to people talk, especially if there was background noise. As a result, I had a hard time concentrating and finding the right words when talking. No wonder it was so difficult to write! 

Finally, I found a great website for military personnel that detailed all the tests I should have had after being diagnosed with a concussion. It advised getting one's sight and hearing checked right away after a concussion. Why didn't the local hospital tell me that? I'm still rather irked that I wasted more than a year thinking I would never be able to lead a normal life again when all I really needed was to get my hearing checked.

I found a highly rated audiologist with a free two-hour evaluation and made an appointment. The audiologist sent me a video about the damage hearing loss does to a person's cognitive abilities. People with hearing problems have an increased risk of dementia due to lack of proper auditory stimulation, which leads to the degeneration of the auditory nerve. Hearing problems can also cause social isolation, depression, cognitive overload, memory problems, increased risk of falling and deteriorating  quality of life. I think I experienced everything on this list except depression.

I went into my appointment thinking that I had a noise sensitivity and would need ear filters. After going through multiple tests, I discovered that my problem was that I was hearing differently in each ear. In one ear, I had high frequency hearing loss and in the other ear I had low frequency hearing loss. This unusual condition is called asymmetric hearing loss. My poor brain had been trying to process different sounds from each ear and that's why I had cognitive overload and became overwhelmed in noisy crowded places. My uncorrected asymmetric hearing loss had caused my brain to abandon my previously existing auditory pathway and generate a new, inefficient auditory pathway, which overloaded easily.

So, I now have hearing aids in each ear. They will be gradually tuned so that my brain can catch up and reprogram itself. It will take six to eighteen months for my brain to be fully reprogrammed, but I am already hearing well enough to eat in noisy places without any problems. Some noises are still too loud, though. I can tune down the hearing aids a little bit, but sound reducing headphones work better.

I received my hearing aids May 15th and left for a two week trip to the UK on July 12th. On the whole, I did fine with loud noises--except when we visited what should be peaceful Kew Gardens, outside of London. I went there in 1976, found it quiet and fascinating, and was eager to show it to my family. Since then, Heathrow Airport added a new runway that has resulted in large, low-flying airplanes flying over the Gardens and nearby town of Kew, bringing almost constant disruptive noise along with them. Because I didn't bring my headphones with me that day, I didn't handle it very well. But without my hearing aids, it probably would have been a lot worse.

July 20, 2023 at Kew Gardens

Here is an interesting post about living under the flight-path of Heathrow Airport during the pandemic: https://hacan.org.uk/?p=78676

My Concussion: One Year Anniversary

Today is May 2, 2023, one year to the day after my concussion. In many ways, I feel like it was a lost year. For months, I easily became overwhelmed when driving and shopping, continued to be sensitive to light and noise, and experienced panic attacks. I felt disoriented and tired and had daily headaches and I never regained my sense of smell.

My daughter has a podcast called Live from Suckville in which she interviewed me about my concussion last June, which was still early in my recovery. If you want to listen to it, it is Episode 9 on this website: https://soundcloud.com/user-168118630 

It took me months before I finally went to the eye doctor for my annual checkup. There, I learned that my eyes were misaligned, which was probably caused by the concussion. Now I understood why I had such a hard time reading, shopping, driving, concentrating and mentally focusing on the book I've been working on for over two years (and still haven't finished). I was seeing in 2-D and it seemed like everything was coming at me all at once. When shopping, I had to run out of the store in a panic. When driving, my peripheral vision was all messed up and, overwhelmed, I had to pull over so my husband could drive. When I received my first pair of prism eye glasses, my headache intensity considerably lessened, my eyes felt much less tired, I could handle shopping and driving, and I could see in 3-D again. (Prism glasses reflect light in such a way that misaligned eyes are corrected). It was amazing how much easier life became.

 But my headaches continued to be almost constant. They felt like they were on the top of my head, where I fractured my skull, but I think they were tension headaches coming from somewhere else. So I went back to the concussion doctor, who I last saw 3 weeks after my concussion. She thought that perhaps I had suffered whiplash when I hit the ground and the headaches could be caused by that. I then went to a physical therapist who gave me neck exercises and acupuncture (he called it dry needling). After three weeks of treatment, my headaches are essentially gone, although I still have to practice the neck exercises every other day.

I also went to a speech and language therapist because I sometimes had trouble finding words when speaking. After two hours of tests, I was relieved to learn I don't have cognitive brain damage and my trouble with words probably was caused by cognitive fatigue. My brain was spinning all the time, causing it to be exhausted and depleted of energy, which significantly slowed down my recovery. At the same time, my brain was trying to function normally and heal by rerouting around damaged areas. Doing additional work like this takes a lot of energy and if I tried to "push through," I ended up totally exhausted and couldn't think or concentrate. 

To correct this problem, I made it a habit to periodically evaluate my energy level. If it was low, I needed to take a break--for me that meant performing diaphragmatic breathing and neck exercises--to restore my energy level and then back to what I was doing until I got tired again. I stopped multitasking, which was a quick way to exhaust myself while not doing a very good job with what I managed to get done. Which explains why I'm now on the third revision of a manuscript that is not even finished yet!!

So, I can see in 3-D now, I no longer have headaches, I can concentrate a lot better than before and I can go shopping with ease--as long as the music isn't too loud and the store isn't too crowded. Which brings me to one more problem I hadn't solved yet: noise sensitivity. 

In late February, my husband and I started traveling again, which meant going out to eat. That was when I noticed that noisy restaurants put me into a panic because I couldn't filter out background noises from regular noises or tell where they were coming from. Loud music, talking, silverware clattering on plates, bright lights and movement all jumbled together and overloaded my senses, making me very anxious. I had to run out of restaurants several times just to get to somewhere quiet. I had to ask restaurant staff to turn their music down or seat me in their quietest corner and at a side table with my back to the wall so that all the noise would come from one direction. Otherwise I couldn't handle it. 

Finally, I made another appointment with the speech and language therapist for suggestions about ways to overcome this. But she seemed at a loss. I'm especially worried because we are planning a family trip to the UK in mid-July. So what can I do to fix this? I have no clue.

Which brings me full circle: I still can't smell anything. It's hard to explain how losing this sense impacts my daily life. It's a sense we take for granted; until it's gone. So going out to eat, which is such an important part of socializing, especially when traveling, is now more of an ordeal than anything else. And the smell of roses or the rain or baking bread or brewing coffee has to be remembered rather than reinforced. Because I don't get the "whole picture" now, everyday life is harder to remember and always seems like something is missing. Cooking dinner has become cooking for others, not for me. 

At least I figured out that protein smoothies for breakfast with its cold temperature and smooth, velvety mouthfeel is rewarding. So I have one every morning. Lunch has become whatever I can grab to satisfy my hunger and dinner is what agrees with me. I've lost about five pounds because I don't eat fattening sweets anymore except for the occasional ice cream or gelato. As far as cake, pie and cookies . . . why eat all those empty calories if I can't taste them? I can taste dark chocolate, though, especially when I melt it in my mouth. 

What I have learned from this experience so far is that it could have been much worse. Also, I have a wonderful husband and family who support me, a beautiful peaceful place to live in and good friends. How could I ask for more??

Learning to Fly: My Concussion

 

“I’m learning to fly, but I ain’t got wings. Coming down is the hardest thing.”

Tom Petty

 

Three months ago, my son Kyle and I were hiking on a steep slick-rock pour-off. We were trying to catch some little frogs and return them to the muddy pond on the bottom of the slick-rock. He was bending over to grab one of these little frogs below me and I was standing above him with my boots gripping the steep slope. Not thinking about my surroundings, I leaned forward to look at the frog and ending up falling.

Now, slick-rock is a misnomer as it is not slick at all. It's actually a gritty, rough sandstone that grips the bottom of one's shoes and is deceivingly easy to walk on. And a pour-off is where the rain concentrates after a storm to flow downhill on rock, also known as a seasonal waterfall. In wet years, the pool underneath this pour-off becomes filled with water, but this year it was just wet and quickly drying sand.

Kyle tried to grab my flailing arm, but he couldn’t catch me. Instinctively, I twisted around in mid-air, landed on my right butt cheek and hit the back of my head on the surprisingly hard ground. I probably fell about six feet.

My glasses flung off, but they weren’t broken or anything. Kyle called out to my husband Scott, who was waiting for us nearby. By the time Scott reached me, I was sitting on a rock with an aching head and feeling dizzy. I don't remember getting up from the ground and walking to the rock. Both Scott and Kyle agreed that I should go to the hospital and helped me walk back to the car. After stopping by the house to change, Scott drove me to the emergency room. 

A CT scan showed a crack in my skull on the top of my head, although I have no idea how I hit it there, and two small brain bleeds in the subarachnoid and subdural layers of tissue between my skull and my brain. (I'd never heard of these layers before and had to look them up later). The doctors diagnosed me with a concussion and kept me in the hospital overnight to make sure the bleeding had stopped. Although they woke me up every hour to make sure my pupils were equal, I knew where I was, I could focus on how many fingers they were holding up, and I was grateful to be there. 

 

 

I had another CT scan the next morning that showed the bleeding had in fact stopped so they let me go home. That’s when I discovered I had a very sore and swollen right butt cheek, which developed into a large salad bowl-sized hematoma (deep bruise) that is still swollen and bruised two months later, but is not sore anymore—thank goodness. The top of my head throbs and I still have a lump on the back of my head.

I hadn’t thought about concussions much before this happened to me, but now I’m fairly well versed. Basically, concussions happen when your brain slams against your skull and gets injured. Because my brain went forward when I hit the back of my head and then back, they call it a contre-coup brain injury. So far, I’ve had most of the symptoms of a moderate concussion: fatigue, dizziness, headaches, ocular migraines (the fun part of migraines—aura but no headache), light and noise sensitivity, over-stimulation which causes panic attacks and, worst of all, a loss of my sense of smell. That means I can’t taste anything except what the taste buds on my tongue detect: sweet, salty, sour, bitter and umami, the savory taste of cooked meat and vegetables.

Before I lost my sense of smell, I didn't understand the difference between taste and flavor. Think of when you last had a head cold and couldn't breath through your nose. You couldn't taste your food very well because you couldn't smell what you were eating. However, you could still pick out some flavors  because the chewed up food in your mouth also passes by your olfactory nerves a second time when you breathe in. The molecules coming from the outside of your body tell you what you are going to eat via your nasal cavity. The molecules coming from inside your mouth give you the ability to distinguish between flavors. Taste buds plus aroma from both your nose and mouth equals flavor.  

If you have damaged your olfactory nerves, you can't detect flavor and have to enjoy foods by how they feel in your mouth (mouthfeel), what your taste buds can detect, and how you feel after you eat. I hope I get my sense of smell back, but I have a feeling it has been damaged beyond repair.

Here is a good link if you want to learn more about the sense of smell: https://www.physio-pedia.com/Olfactory_Nerve

Or if you prefer just looking at a diagram, here is the photo that comes with the above article:

What you can't tell from the photo above is how thin the bony barrier (called the cribriform plate) is between the brain and the olfactory nerves in my nose that detect smell molecules. Olfactory nerves   terminate in the olfactory bulb, which transmits the detected smell molecules to the brain. Since the olfactory nerves dangle down from the top of the nasal cavity, they are easily damaged if a person suffers a traumatic brain injury (TBI) such as mine. When the brain slams against the nerves, it can shear them off or severely damage them. Although olfactory nerves have the ability to grow back, there is no telling if mine are too damaged to grow back. Meanwhile, I’m sniffing everything I can find: essential oils, spices, plants, the air after it rains, etc. and hoping the repeated scent onslaught will bring my sense of smell back. But so far no luck.

Hidden Enemies-at a bargain

I identified with the main character in the recent Netflix movie Tick Tick BOOM. He had been working on a musical for 8 years and in one week would be showing the musical for the first time. Only one problem--he had to write one more key song. He sat at the computer and started a sentence. Then he corrected the sentence, then he deleted the sentence, then he rewrote the beginning of the sentence. He sat there, watching the cursor tick and tick and tick . . . 

In 2020, I changed my book Remember Me from past tense to present tense. Remember Me received first place in the suspence category in the 2019 Next Generation Indie Book awards and Honorable Mention at the Hollywood Book Festival. So I know it must be a half-way decent read.

I also published another book Hidden Enemies. This book received an Honorable Mention at the 2020 Next Generation Indie Book Awards.

Since these books are difficult to find by searching Amazon.com, here is my author link: https://www.amazon.com/stores/M-A-Florence/author/B00915SFSE?ref=ap_rdr&store_ref=ap_rdr&isDramIntegrated=true&shoppingPortalEnabled=true

Back then, I was inspired then and I had a lot to say. Then the pandemic hit . . . and I have been languishing. I am working on another book, but it's going slowly. And now, for the first time, I understand writer's block. 

I have done a terrible job of marketing my books and have made very few sales. So at least someone would read them,  I decided to donate my books to the library yesterday and talked to the person in charge. He said if they are self-published, he needs to take a look at any book reviews on Amazon as well as the books themselves. I left him one copy of each book, plus Red Flag Warning that I had to regain my rights from Infinity years ago when they went out of business and republish myself (long story). 

I took a look at all my books on Amazon.com and Hidden Enemies had nothing, zero, zilch reviews and the book was marked down to $5.59 (from $12.95)! First of all, I asked two people who have read my book to submit reviews and they did. Thank you Mike and John. Then I asked the self-publishing service KDP what was going on with the price change. 

They responded, "Melanie, per our Terms and Conditions, we retain discretion to set the retail customer price for the books we sell. Our decision to discount products is based on a number of considerations, which vary over time. However, the discount doesn’t affect royalties earned from orders placed on Amazon. Your royalties will continue to be calculated from the list price you provided on your KDP account, in this case you will continue to earn royalties as if the book was being sold for $12.95." 

So, I have a book bargain for you!! And I hope you take me up on it.

Finding SIBO

Finding SIBO

 

What is SIBO you ask? Well, it took me a long time to find out. But now I know why my digestive system has been out of whack since I had my cancerous appendix removed in February 2017 and a subsequent right hemicolectomy 16 days later. (A right hemicolectomy is the term for an operation that removes the beginning of the large intestine: which consists of the cecum and the appendix, the small finger-like projection on the bottom of the cecum). A general picture of the digestive system shows the appendix hanging down from the cecum:

Not long after I recovered from my surgery, I began getting mild acid indigestion. I kept a food diary and discovered soy products were part of the problem. So I stopped drinking soy milk, and eating tofu and protein bars made with soy. That worked for a while; then the acid indigestion came back. So  I stopped taking fish oil pills, which can--surprisingly--cause acid indigestion in some people. That didn't help much, so I decided to start taking my vitamins after eating breakfast, instead of at night. No change. Then I gave up coffee. I gave up wine and beer. I gave up chocolate. I put myself on a high alkaline/low acid diet. Nothing helped. 

I got to the point where I was taking Tums before going to bed every night, waking up multiple times with acid indigestion, taking more Tums, and paying the price of all this indigestion and lack of sleep the next day.  I turned to the internet and found a help group consisting of people like me who had digestion problems after having a intestinal surgery, especially a right hemicolectomy. Bingo. All these people had tried a lot of different diets that were not always successful and most were still searching for a cure. I further discovered that when my surgeon removed my cecum and appendix, he also removed a one-way valve that separates the large and small intestines. It's called the ileocecal valve.

In a complete digestive system, food travels one way: from mouth to stomach to small intestine to large intestine and then out of the body. The direction of this process is controlled by peristalsis (the muscular contraction of the esophageal and intestinal walls), sphincters and valves. Basically, digestion consists of mechanical breakdown (chewing), and chemical and enzymatic breakdown (acids in the stomach; bile and enzymes in the small intestine). Most of the nutrients are absorbed into the bloodstream from the small intestine and only a small number of specific bacteria inhabit it. The digested food then travels through the one-way ileocecal valve to the cecum, which absorbs water, vitamins and electrolytes, then into the colon where a large number of bacteria break down waste products and produce vitamin K.

From studying the digestive process, I learned that missing an ileocecal valve is not a good thing. Without this valve, bacteria from my large intestine can back up into the small intestine, colonize there and wreak havoc. I finally found SIBO: Small Intestinal Bacterial Overgrowth. 

I went to my primary doctor and he put me on antibiotics, which helped for a while. But the acid ingestion came back with a vengeance. I needed a permanent fix. So I tried different diets until I finally happened upon a miracle: a diet that switched me from absolute misery to symptom-free. It's called the specific carbohydrate diet (SCD) and is outlined in the book "Breaking the Vicious Cycle. Here is a link: http://www.breakingtheviciouscycle.info/home/

This book was written for people with large intestine problems, but it works for me. On this diet, I'm starving the bacteria that traveled up from my large intestine by cutting out foods that contain easy-to-digest carbohydrates. For example, flours, sugars and refined grains. I also gave up bread and gluten. The very day I started this diet, my symptoms disappeared. Not only did I find SIBO, I discovered how to lose it! 

Self-publishing with CreateSpace (Now called KDP)

Notice: The name publishing name CreateSpace has been changed to KDP (Kindle Direct Publishing), but otherwise it's still a product of Amazon.com and works the same way. KDP is a self-publishing service that doesn't cost a cent, if you do everything yourself. I've published 3 novels using KDP already and they are available on Amazon.com. I also finished rewriting the novel Red Flag Warning and am in the process of publishing it, too, on KDP.

Why am I publishing this book again on KDP?

1.  In 2012, before I knew about inexpensive do-it-yourself publishing, I paid Infinity Publishing to be my publisher for this book. I'd  already gone through the traditional publishing model, where I searched for an agent and sent chapters to what few publishers took unsolicited manuscripts. After some time passed without results, I learned about "vanity presses" as they were called then. I talked to some fellow writers who had self-published and decided on Infinity Publishing. After paying for them to design the cover and put my book into print, they put it on Amazon.com for me in paperback and kindle versions. I only sold a few copies, which was OK.

2. After I wrote a few more books and published them on KDP I saw that Red Flag Warning had been marked way up in price. I contacted Infinity Publishing about it and they changed the price back to what it should have been. But when I searched the Infinity Publishing website, I found that it had been sold to another company. My feelers went up when the website also did not work very well. I contacted the agent again about buying author copies and learned there were a minimum number of copies I had to order and it was expensive. Not so with KDP. An author pays how much it costs to print each book, with no minimum  number of copies required, plus shipping. I then looked up Infinity Publishing in the Better Business Bureau and it got an "F". That did it for me. I asked them to free me from my contract, which they did.

3.  Now was my opportunity to have total control of Red Flag Warning! I reviewed the manuscript, which I saved, and saw many ways to improve my writing. KDP allows the flexibility to change a book at any time. One still has to go through all the steps again, which can be a pain, but at least the author has the opportunity to change his/her book without payment. In the finished project, my story is exactly the same, but I made it smoother and faster to read.

4.  I get 100% of the royalties for any books and kindle copies sold!
 

Drawbacks to using KDP

 
1.  If you want a decent cover, you need to hire a graphic designer to do it for you. For my book Remember Me, I did just that (my son's girlfriend, who is a graphic designer).

As you can see, she did an excellent job and it helped me win several awards--first place in the 2018 Next Generation Indie Book Awards in the suspense category and an honorable mention in fiction in the 2018 Hollywood Book Festival. Since many writers enter these contests, I finally feel validated that I'm a good writer.  For Red Flag Warning, I am using the front cover I paid for and had to make up the back cover myself (which is not nearly as polished as theirs--but that's how it goes).

2.  There are a lot of steps to go through and you need to check everything to make sure it is correct. Self-publishing also requires a thorough edit and knowing how to set up a book. Some people will pay for an editor, but I am very lucky to have my husband and a few friends point out my mistakes. Since I was originally trained as a botanist and am largely self-taught as a writer, I definitely need the help! As for setting up the book, the author needs to have fairly extensive word processing skills. I was forever looking things up at first, but now I think I have the hang of it.

3.  The author must market him/herself. I'm not much of a marketer so I'll probably never become famous or make a lot of money on my books. Oh well; all I want is to get my books out there and to be read by someone, instead of piles of paper in a drawer. If a person doesn't have an Amazon.com account, that can be a drawback as far as sales go, too. But there are ways around that. That's one reason I send out this blog!