People Change, Bodies Change, Minds Change, Memories Change

It has been just shy of 27 months since I obtained a traumatic brain injury. Upon my return home, I learned that I loss my sense of smell and flavor (anosmia). At the beginning of this stage, I was filled with anger, grief, and frustration. I will not lie; some of that is still there. I took pride in cooking whole foods and using recipes as suggestions regarding the herbs offering flavor. I fought eating and not eating. I won’t lie.. I still do.

However, along my journey I realized what I still have: textures and sensations in foods. Well, to be honest, the joke has still been it all tastes like chicken. When I have eaten or even prepared to eat, I have dissected the tastes (not flavors) of foods along with textures that they may offer to the point of writing about this here.

There is a new discovery. My husband has said, “What you focus on, you create.” Well, I have focused on what I still have. The result is my memories have altered. I do not remember the flavors of foods. I know to many this may sound very sad; however, that is not my goal here. I am here to offer encouragement, for the world (this condition included) is full of pain and grief. To not remember the flavor of foods is a wonderful thing, because WHAT I DO REMEMBER is textures of food and that I have appreciated even from childhood! I don’t remember the flavors of foods and the pleasure they brought. To be honest, I never really loved eating due to some early childhood experiences. There’s a song called “Don’t Know What You Got Til It’s Gone.” Well, you don’t miss things when you don’t remember them, which is far healthier than memories of what potentially will never be again. We cannot live in the future nor the past, and the best way to live is moment by moment and appreciating what you do have instead of hoping for what was and / or may never be (again).

The most miraculous thing in this experience is I did not cognitively purposely lose my memories of foods’ flavors. The only thing I did is to live in the present and try to appreciate my new life without smell.

I used to drive into the driveway of our old house from where I fell from its balcony. I pined for how and who I was. I pined for the memories that we created in that house. I grieved that I could not go back in time. I now no longer visit that driveway and peer on all sides of the house. I am focused on living in the present. The outcome is far healthier and more beautiful than focusing on what was and will never be again.

The mind is a beautiful thing. My mind has adjusted and programmed my memories based on my willful mindset of how I am living and aim to continue living: in the present.. not in the past nor the future.

If I can do this, then you can too. I will say this was done with the intent on living in the now; however, I was not directly looking to forget flavor. It happened unbeknownst to me. I hope that you will join me and find more joy  and peace in your life as well.

Claiming One’s Place Vs Circumvention

As aforementioned, I obtained a brain injury August 24, 2014 and nearly lost my life. I fell twenty feet from our former Victorian home’s balcony and had a subdural hematoma (7 inch brain clot), which had both my brain lobes on the left side of my skull.

I began attending monthly brain injury support group meetings May 2015.  It took me from October 2014 to May 2015 to even realize I had new challenges outside of inability to smell and loss of flavor (which most people call “taste). Upon attending these meetings, I met a young lady named Anna Pope who also obtained a brain injury through a car wreck. Every time we introduced ourselves, she always says she’s a survivor. I remotely heard her from day one; however, like all the other attendees, I would talk about “my accident.” Anna is a breath of fresh air to me. I am very particular about verbiage, and after a while, I HEARD her. I heard she was not circumventing what occurred but instead CLAIMING her victory. Talking of only the accident is all about loss, whereas stating you’ve survived is about victory.

Time passed, and I followed Anna’s footsteps and began claiming I am a traumatic brain injury survivor. This matters. What you state and how you state it do matter. The more you claim victory, the more victorious you feel and become.

Years ago, I attended a Jubilee Church. There is a speaker by the name of Kevin Leal who repeatedly speaks of CLAIMING your life.. I am thankful that he sowed this seed and that Anna watered it. Because I now know firsthand that this is not a crock of bull. It is the truth.

Now, as of today, I just read about a fellow anosmic, Sarah Ramsden, who is a nutritionist. She obtained a brain tumor and lost all smell and flavor. She states she is a brain tumor thriver. So this is my new stance. What you focus on, you create.

My goal in this post is to help encourage everyone to not be bashful or ashamed for the lemons life has given you. You can let them sour or you can make lemon meringue pie among other things, whether sweet or savory.

Gratitude is bestowed to these wonderful influences in my life, for they have made a difference not just in a moment but in my perspective of myself and the world around me.

Anosmia and Artificial Flavoring

As aforementioned, I acquired anosmia versus being a congenital case. Therefore, I understand if those of you who have had aosmia your whole life either understanding or not understanding some of my posts about this condition regarding food and eating.

I have never loved food. The reasons are a whole different story. However, there are things I enjoyed before I had anosmia. There are some things about my former life that I have realized are still part of who I am and my preferences.

You would think that artificial flavoring would not affect anosmics, because we only taste from our taste buds and miss the 95% of “taste,” which is flavor. Here’s the thing. There are foods that have taste condiments, which offer more sweet, sour, salty, and occasionally bitter. Chocolate is the closest food to tasting as it was. HOWEVER, chocolate flavoring versus genuine chocolate DO NOT taste the same. I would think this is more known to us, as there is probably a way to offer the aroma of chocolate giving the one eating fulfillment, as flavor is a huge facet in eating to most.

Due to this realization of imitation chocolate flavoring, I have come to understand that artificial flavoring does matter. The point of this is that reading labels or what is written in fine print is pertinent if you are seeking to enjoy what you are eating. Furthermore, understanding that flavoring is not the same as the genuine food offering tastes is not the same. Therefore, at bare minimum understanding this can keep you from feeling disappointment that the food does not taste as you remember.

I do understand that hardly anything tastes what it did before becoming anosmic; however, understanding limitations along with having a moment of some pleasure eating is better than always being down in the mouth (pun intended).

Redefinition, Reinvention, and Stumbling on the “Old Me” Who is Still There

In many ways, there are injuries and events that change who we are. I could write about TBIs and all the changes that occur physically, emotionally, behaviorally, and more. However, I am going to slant this outside of the medical world before formally venturing there.

Twenty-six years ago I was a waitress/server. After I became pregnant with my oldest, I quit work so I could be a stay-at-home mother. After that, her father and I eventually visited the restaurant franchise where I was a server. Even though I was not in uniform, my mind and emotions took on that role, as if I was on shift at that very moment. I heard the orders being called to the cooks, the salad bar’s containers that needed to be refilled and more. I could not relax. Here I was a server and could not be a leisurely patron at this restaurant. I even found that at many restaurants I would still mentally be working. It was void of being able to relax.

After a while, I thought to myself how ridiculous this was and how I should place myself in the role of being a patron/customer. It developed to the point that every once in a while I request the server for something I would prefer, which took some gumption, as I always saw it as making the server be put under more demands and stress. In other words, I had to reinvent how I saw myself along with my actions at a restaurant. I have always been independent and have never reveled in being served. That waitress is still in me.. the older version of me is still there. I stack the plates, etc. when my party and I are preparing to leave and pay the bill.  Actually, it is comforting for me to do this for the server. I have had that sort of job.

So, I have a new me, whether I want her or not. When you have had a brain injury, things change. For some, there can be loss of limbs or ability to move a portion of their bodies in the same way they could. I have that a little but not as much as emotional, psychological and behavioral changes. I used to keep my thoughts and feelings totally to myself. I still do that some; however, I don’t do it all the time. I have come to learn that some of these changes are healthy for me, whereas “stuffing” all thoughts and feelings may be more amiable to everyone else, it is more unhealthy for the person doing this. So, the first step is to see the good sides in the “new hand” that life has given.

My injury took place 24 August 2014. My battle for the “old me” unknowingly began around October 3, 2014, as that was the day I was released from the hospital. I did not know I was fighting until around May 16, 2015. All I saw for so long is everything I am not anymore. It is as if anything I appreciated about myself seemed to be gone. HOWEVER, this is not true. I was a daredevil from the time I was a little girl. I pushed the bar with the restrictions with my return home. Yes, I know that going beyond what is recommended/advised by the medical field is not the wisest choice. I wanted to be free, and felt like all of these rules were caging me. Upon a recent conversation with my husband, I revealed all the different ways I have crept beyond the line or attempted to do so from decades ago. These are all fun moments to remember BUT NOT ONLY THAT! Just speaking about them HAD ME REALIZE SHE’S STILL THERE!!! Sure, I’m more vocal and I see how that can be frustrating. Yes, my daredevil side is there; however, THAT’S PART OF THE OLD ME! What that means is I’m not an alien to myself. Sure, there are facets about me that have changed, but I have loved music and singing since I had a gym set. I have been a daredevil for most all my life at least a little. So, I have changed. The grief is a lot less coming to grips with the facets and characteristics/traits of me that HAVE NOT CHANGED.I am not saying all my “old ways” are the safest or even advisable to maintain; however, there is more inward peace and acceptance of myself between the combination of understanding the good things that have developed and the fun ones that are still there.

The other beauty in this is the ability to dream and not only be redefined by the event itself but also to reinvent oneself. Part of my reinvention is to write about such things to help others.. not for accolades, just to help others in ways I may or may never know. In the past, I only had hats relating to my family (friends are family too) and not others. Now, I have invented the idea of creating a firsthand voice and responding to those I know and do not know. I would not be writing about anosmia or all these changes if it were not for that TBI. However, there is NEW compassion and NEW comraderie along with a NEW zeal to write my positive experiences to help all those others out there fighting their own battles. As aforementioned, no accolades are sought. Giving with no expected results is quite wonderful.

Appreciation Vs. Loss

I was released from the rehabilitation center for my TBI on October 3, 2014 after my accident happened August 24, 2014. Since that return home, there have been many battles. The primary battles have been regarding loss and change. TBI survivors often acquire Alzheimer’s or dementia. A local chiropractic neurologist linked that to depression. Upon talking to my husband, he stated that when one is depressed it takes all that person’s attention and that person becomes forgetful of everything outside of the topic causing depression. Ironically, patients with Alzheimer’s are better with schedules. They become adapted to the schedules and even less accustomed TO CHANGE or the feeling of LOSS.

I have not appreciated my husband enough lately. I have not tried to show this; however, I have pined and longed for “how we were” and “how Dan was.” However, how can Dan be the same? He almost lost his wife. He had to play both the mother and father role suddenly without his wife for about six weeks. I cannot be the same even if I try, at least not totally. How can Dan be the same? Why should I pine for something that cannot happen?

Amidst all this pining, appreciation has been diminished. Many TBI couples divorce. That TBI survivor does not act exactly the same or maybe that survivor cannot physically do what he/she did, whether math, see, smell, taste, hear, read, move, etc. Surviving such a thing and having cognitive skills with no new reference markers to who and how we are, there is a slower understanding of changes to the survivor. There is a slower understanding of to whom and what our loved one/s have lived and adapted.

Today, I talked to a friend about my fall and how my husband had to plan meals, be the business secretary again (I proudly took that role early in our relationship), adjust to a more confined, smaller house in the middle of the chaos while not knowing i I would keep breathing or have cognitive skills. I then relayed how I miss “that look” he would give me and some of “the feelings” that seem to outwardly be gone. They’re not gone.. they are changed.. in a new light, but they are not gone. However, without “the look” it has felt that way. However, coffee on the porch, calls when he is returning home, and even a milkshake now and then on his arrival.. those scream the love is still there and is shown in ways and methods that were not there in the past; however, back then, he did not have a job away from home. My point is I am on a path to regain appreciation of the “changed” Dan due to the “changed” me. I’m more outward with my feelings, and he is more outward with his. It may feel worse; however, if he stuffed his emotions like I had my whole life, THAT WOULD BE WHAT IS WORSE.

It is saddening to know I accidentally took him for granted and have not appreciated him as much as I can (and should).  Maybe I don’t give him a certain look and will give it again without ever knowing it was there or gone. Regardless, appreciation is a much better focus than on things and relationships that cannot return to how and what they were.

Isolation, Self-Isolation Vs. Compensation Therapy

This portion was written March 27, 2016.

It has been 19 months and 2 days since my 20 foot fall onAugust 24, 2014. October 3,2014, I learned that I can no longer smell. My first reaction was shock. I learned when I whiffed my husband’schest to smell his cologne while we were watching a movie. I learned that it was not there. When we returned home, I picked up every bottle that had a scent: dishwashing detergent, bleach,shampoo,etc. Nothing..It was all gone. A short time later, I told my neurosurgeon about this find, and he replied that if it did not return six months from my accident that it was permanent. There was no warning of danger. There was no emphasis to keep eating and to find a way to enjoy it. Maybe he did not say anything because there is nothing he can do to fix a dead olfactory nerve.

As time passed, I learned I cannot “taste” flavor anymore. I learn that all I have is what my taste buds allow me to have and that flavors are stimulated from smell. This caused me to not want to eat. I would rather other people enjoy food than me “steal” it from them. After all, the enjoyment was and still is gone. Every time smell is mentioned, it has caused me to feel isolated. My response was to cut myself off even more, thinking that would reduce the pain. However, it only causes more pain to be isolated from the world and then to cut myself off from it even more.

My husband, Dan, loves fragrant flowers. He bought some for our new yard last spring. Every time the wind would blow and he could smell their fragrances, he would mention it. It is sad, I will not lie. Then, my granddaughter made remarks, so instead of letting it bring me down, I took her around our yard to smell every blooming bush we had. I did this for her, and I did it for me to help me to raise my head higher and at least for the moment not feel such loss.

This year we had mandevillas die over the winter. I decided to buy jasmine for my husband to give him what he loves: fragrant flowers. Was it difficult to open the store’s door? Yes. It was even more difficult to talk to the representative about my loss and my goal.. and how I cannot begin to sense what might be the most fragrant. I brought the dormant vine back, and we have planted it.

My whole reasoning behind buying this vine is to help me face what I will never gain. Furthermore, it is to give permission to my loved ones to enjoy what they have not lost. I do not have the end of this story yet; however, this seems much healthier than giving in to the natural isolation followed by me causing more isolation. I am the cause of this jasmine being in our yard, and I am the one giving pleasure to my husband. No, I cannot enjoy it as he can. Yet, giving to him beyond what I can personally experience does offer fulfillment. After all, I love him and my children so much that I do not want to keep them from pleasure.

I believe this is a concept that can be used by many, not just anosmics. We all have disabilities or deficiencies. We should not deprive others from what they still have. Furthermore, when we give to them in the ways we cannot appreciate firsthanded shows and gives loves beyond comfort; however, it helps us accept our faults ALONG WITH opens to door to forgiving ourselves of the shortcomings we have in our lives.

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This part was written June 4. 2016.

I have given more thought into compensation therapy. I bought a jasmine plant for my husband for his pleasure and the hopes that I could slowly accept my olfactory nerve being dead for life. The thing is there are so many other people who have suffered loss or never functioned with all the senses and body parts as the average healthy human was born having. Writing about smell loss is not enough. Furthermore, this concept has not had enough articulation. Below is a list of losses and ways for each of them to be accepted and even vicarious appreciation that others have what we do not. I will be adding emotional issues onto this. As aforementioned, the array is vast and will take time for me to explore and articulate any conditions and challenges that come to mind to help us all to accept and forgive ourselves for things we cannot help. Furthermore, I will be posting ideas to help social issues, as they are correlated to many brain conditions, not to mention this may be how any one reading might already function without any biological / physiological reason known.

Smell loss: Aromatic candles and potpourri, fragrant flowers, baking

Memory loss: photography, videography, planning events for you and others for memories that will be at least be remembered by some, listening to others sharing their memories, writing / blogging, story telling or even writing short stories

Visual loss: Art, Lacy tablecloths, Curtains with more than one fabric in the print, Picking the driver to spend time with that person, keep going out instead of becoming a hermit.. learn how to observe people and nature without sight… listening to birds communicate to each other… listening to who shuffles his feet, etc.

Hearing loss: Music with tempos that others enjoy to percussion that deaf person can appreciate. Working with your friends and loved ones to help create your own sign language to and for those whom are close to you.

Vest for the Deaf Translates Speech Into Vibrations

Vest for the Deaf Translates Speech Into Vibrations Scientists developed a vibrating vest that converts speech into vibrations that a deaf person could feel and und…

Taste loss: Textured foods, serving beautiful plates of food with garnishes, etc.

Amputee: Picking help based on their abilities and their company. Give gifts to others for what they can do and you cannot that is pleasurable to the other. For instance, crochet needles, patterns, and yarn or running shoes.

None of my senses grew with the loss of smell. I have a difficult time believing this happens. Now, the closest I can imagine is other senses becoming more emphasized but not actually greater.. with better skills. It is more of an emphasis because it’s what I have not lost WITHOUT it being greater.

Another means of acceptance / compensation is making light of the loss. Here’s the kicker… how to do with this without feeling worse. How to do this without a passive-aggressive, angry stance. I can be quite internally violent with humor, causing more anger. I do not always do this, but there are times… especially given the company I am keeping at that moment. Humor is an interesting topic. There is a way that humor bonds us, and there is a way that it separates us, i.e. blonde jokes… jokes about clergymen, women jokes, etc. The flipside is (or can be) making fun of my foul cooking or saying I will change a diaper when I can smell it. I feel a lot of humor depends on the mood the survivor/patient has at that very moment ALONG with the company I am keeping at that moment and what connotation the company’s humor veers.

 

“The New Me” vs. “A Changed Me”

Since my return home in October 2014, I’ve been fighting the idea of “the new me.” It wasn’t until reading the Oliver Sacks’ preface to “An Anthropologist on Mars ” did I learn a new perspective. The concept is that there is “a changed me,” with my body and mind compensating for the changes in me that I have obtained.

The idea of change is more forgiving and accepting than fighting for the old me, whom I will never have again due to mind and body changes.  Mr. Sacks articulated how the mind and body are wondrous, compensating with and even underneath awareness. It’s s losing battle to fight for what cannot return.  I am invigorated to find a substantial view with acceptance instead of pursuing insanity filled with an impossible dream .

Appealing Foods to People with Anosmia

For all of you readers who do not know what anosmia is,it is the condition of not being able to smell.If one cannot smell, we cannot sense danger that everyone else can, and 95% of taste is gone, as smelling is a valuable facet to tasting. I have more posts to educate those who have anosmia as well as those who know people like us along with help the culinary arts field, as texture is underrated; however for anosmics it is largely the highlight of any dish along with sensations (cool mint, hot salsa…)

 

Sandwiches with Coleslaw or Potato Chips. Coleslaw adds crispiness and crunch, while potato chips offer crispiness.

Croissants with Melted Chocolate or sliced almonds in an almond paste- Flaky croissants with gooey melted chocolate. Sliced almonds offer a crunch along with creaminess of almond paste.

Pineapple Uside Down Cake – The pinapple glaze offers silky moisture while the cake is moist.

Boston Creme Cake/Pie – Chocolate ganache, pudding between both cake layers. Three textures: crunchy (or gooey depending on the temperature of the cake), creamy, and spongy.

Buffalo Loaded Fries – Blue cheese offers a bitter flavor, and the buffalo sauce gives heat.

Habanero Jelly – Sweet with heat.

Chocolate Hazelnut Spread (like Nutella)

Ben and Jerry’s Ice Cream – Note: Ben Cohen and his partner began their partnership after Mr. Cohen obtained anosmia. They partnered to compensate for Mr. Cohen’s loss. Their original business was an ice cream parlor. Now we have their goods, AND MR. BEN COHEN approves each recipe. If you read the descriptions and ingredients, there is a high emphasis on texture!

This post was started on July 25, 2015; however, there have been updates as my venture continues for all anosmics.

A New Perspective for Eating

It has been just shy of eighteen months since my accident, falling twenty feet and obtaining a traumatic brain injurty (TBI) along with anosmia. I hate to admit it, but life in general has become bland. It is ironic how my life was seemingly more flavorful when I could taste and sense flavor versus not being able to smell and having flavors removed from my eating.

 

I have been in and out of searching for answers for myself along with all my fellow anosmics. I feel their pain, whether anosmia is a result of an accident or whether it has been a part of life since birth.

 

Within my search, I have talked to friends, family, chefs, counselors, etc. I have learned smell is the sense linked to emotion and memory the most. To not have that is saddening and filled with much loss. So the question is what do we do about it regarding eating  with the loss of both smell and no flavors? My sister-in-law told me that if I am eating a certain food, remember what it was. Tie the memories and emotions into the food. After all, eating is both bland to the palate and to the emotions, whereas to most eating touches the heart and gives satisfaction to the tongue while filling the stomach.

 

I decided to do this. Before my accident, my husband and I would eat at various restaurants and we had come to order desserts on occasion that often were chocolate with amaretto drizzled on the dessert. Yesterday, I requested this be ordered with our Valentine dinner. Part of me was disappointed.. disappointed because I already knew it would not be the same. The other part kept telling myself to remember.. remember the dinner.. remember the romance.. remember how wonderful it was to eat this dessert together with my husband. The result is it was less bland than it would have been. If I had not tied this memory into what I was eating, it would have been full of grief, sadness, and loss. It would scream everything I had and how it is likely to never return.

 

I know not all anosmics are that way from accidents but from birth instead. However, all of us with cognitive skills and abilities have memories of love and bonds. Most of us have our sense of touch, sight, and hearing. Due to this, even for congenital anosmics, this is still a viable way to eat and make at least some foods more amiable and pleasant… to remember and rexperience the love and bonds we have with our family and friends while eating can help. It may not give our mouths flavor; however, it can minister to our hearts. Thank you, Linda, for your insight. I am glad you mentioned this idea, and I am proud to say it is better to eat this way even if on rare occasion than everything being a fight to eat.

Compensation for Anosmia in Autumn

This is a very difficult topic to write, as this offially the first autumn that I have experienced with more of the understanding of having anosmia. I have a friend who was born with it, so he never has smelled anything ever. Once my husband, Dan, asked me which is worse, to be born with it or to lose your ability to smell. I told him BEFORE knowing my friend, Jim, that I felt that they were equal cases with different aspects.  I still agree with that stance. Here, Jim has never had the experience of smelling food his mother has prepared, the smell of a woman naturally or with cologne and many other natural scents. Whereas, I had a sense of smell, and now it is gone. So, congenital anosmia cases never smell from the day they are born, and then most anosmics had it and it’s gone. Some of us never know anything about flavors (as the only thing anosmics taste is bitter, sweet, salty, and sour versus smoky, pungent, etc.) and most of us must learn to cope with learning how to face our losses and find other ways of enjoying life.

There are many different aspects of autumn: the smell of a cinammony pumpkin pie, smoky food grilling in the barbecue pit, roasted turkey, hot chocolate and hot apple cider with cinnamon and cloves. Autumn is full of pleasant weather, and has many family and friend activies: barbecues, Thanksgiving dinner, football at the park and lots of steamy drinks to warm our chilled bodies.

For anosmics, hearing about smells and tastes is stifling. It is like sitting in a room filled with people who are speaking a language even you never knew or even forgot. How do you speak about something you cannot determine? Do I speak from what I remember? Does Jim speak about what he does not even understand? Or do we simply say we cannot relate, which isolates us even more from the conversation? It is a tough call. How can you speak from your being about a gardenia you never smelled or can no longer smell? How can you speak of only 4 tastes and no flavors? It is debillitating and very depressing.

There are some things we have, or at least most of us have: sound, touch, and sight. Focusing on these and even talking about them can help us deter from conversations that make us sad, while offering attention to ourselves and others about what we have in common. Not all jokes are about smells and odors. Pranks, blunders, and even embarrassing moments are worth laughs. This is what we have. This is a way for us to enjoy each season. We hear the rustling of colorful leaves falling from the trees, see the pets trying to steal our barbecued foods and enjoy all the topsy-turvy events in football and many other sports events. Also, birds are calling to the other sex for mating… even female birds do this in autumn. I am sure they are delighted they have their empty nests. This is what we have. This is what we have not lost, and while we have these abilities, we should be thankful for that and focus on what we have in common instead of what separates us from other people. Maybe eating is a chore. For me it is. Maybe we can’t articulate how wonderful the cook worked, but we can share memories, insight and listen to what others have to say and enjoy being a part of a moment that can be a memory if you SELECTIVELY CHOOSE TO MAKE IT ONE. The problem with anosmia and what little we think of as bonding us to others versus US PROACTIVELY BONDING with EVERYONE in the ways that we can WITH THE ABILITIES WE STILL HAVE.

Think of it this way: my husband is dyslexic. He is not one good in spelling. However, he is good with renovating houses, teaching dance through the concepts of physics. He has taught me that I teach people how to treat me. Does he have a disability? Yes, he does. We all do.. dyslexia, blindness, stuttering, limping, etc. None us are perfect, and we must grow to accept our imperfections in ways we form, every season, all season long.