Victory Over Optical Illusions: a Perspective on Autism

My daughter and I recently started to put together a series of videos about our family's daily experiences with chronic illness and disabilities.   We both have a desire to use our challenges as a testimony so that we can rise above our circumstances and help others have insight.  Our mission is to inspire those who have their own struggles to get out of their comfort zone and share their stories.  I have been blogging about living with chronic Lyme disease for more than seven years and have made this a platform for my ministry to encourage others and to pursue joy in all circumstances.  In doing the vlogging series, Heart of the Dragon, we have taken these experiences at another level with candid videos about our daily pursuits. In these pursuits, we decided to come forward publicly and share her testimony.

I can testify that the emotional process of parenting a an autistic child has been like walking through a foreign country, unsure of how to navigate our surroundings--so we wing it.  Since my daughter's experience doesn't fit the autism stereotype, we went through stages of denial and misunderstanding about her situation.  We did provide early intervention for her through local services and early childhood programs; however, because there was no concrete diagnosis until she was in high school, we did not have many resources or information on how to help her.  We just took it a day at a time and worked through it as we went.  We made plenty of mistakes along the way but encouraged her to be independent and work as hard as she could given her situation.  Later on, I realized how inadequate her support system was; however, there were a couple of teachers who understood her and made a positive impact on her life.  As an adult, she has become an amazing advocate for autistic children and adults, and I am extremely proud of the difference she has made.

I sometimes wish that I would have had the knowledge and resources that I am aware of now when she was a child so that we could have been more understanding and supportive of her needs; however, we are very thankful and blessed to have such a kind and dedicated daughter.  She has always been socially reserved and not many have had the honor to know the quirky, funny, brilliant, and delightful young lady that we know.  I have always had a secret desire to share the person I know with the world so that those who have misunderstood her could see her for who she really is.

This summer, we began our mission to take victory over our lives and had an incredible time in the process.  Most recently, we did a series of videos about a family vacation to Branson, MO.  My favorite video was about her perspective on optical illusions at the Ripley's Believe it or Not Museum.  I was fascinated to find out that she could go through a very disorientating exhibit without any problem while everyone else had significant struggles, some not being able to get through it at all. The reason why it was easy for my daughter was because her autistic brain enabled her to see details that others would not notice, and she was able to figure out how the optical illusion worked.   It was amazing for me to observe her perspective on the the exhibit. Others were also fascinated by the video we made about the exhibit because of its enlightening perspective.  When I told my daughter about the response to the video, she laughed and told me that she doesn't want be seen as a "super hero" or an "awesome autistic."  She just wants people to see her for who she really is and accept her as a person.  My daughter knows I see her as a hero.  My kids are all my heroes because they are fighters and they inspire me.  I am excited to share more about autism through my writing ministry and put together a few video clips about it as well.  We hope to bring a new light to  our unique situation and let others who are autistic know that they can thrive no matter what challenges they face!

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JOYFUL TREASURES:  Be Real and Share Your Story!

" I don't want my thoughts to die with me, I want to have done something.  I'm not interested in power or piles of money.  I want to leave something behind.  I want to make a positive contribution- know that my life has meaning."  --Temple Grandin

We all have a story to share.  Don't be afraid to speak up and be a testimony.  You never know who might need to hear your story.  You can change the world one word or idea at a time!

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Here is the video we put together about my daughter's perspectives on optical illusions during our recent trip to Branson.  Please note that she has since corrected me on how to describe autism as she doesn't use the phrase "autism spectrum" and finds the term "high functioning autistic" to be degrading.  I also have quoted autism advocate and author, Temple Grandin, in this video and in my blog.  My daughter has made it clear that she does not agree with some of the things Grandin has said about autism and she is not a fan of her work.  Since first posting this blog and video, I have learned that there are many common misconceptions about autism, and I do the best I can to show respect to the autistic community by noting these misconceptions and respecting their preferences.  I have shared Grandin's work in this case because of her enlightening perspective on optical illusions from an autistic point of view:

https://www.youtube.com/watch?v=xsLw5-pnn-4

For more information about Temple Grandin and her movie about optical illusions:

https://www.youtube.com/watch?v=zWuem1ViVDE

https://www.youtube.com/watch?v=UGbFUajfNe8

https://www.youtube.com/watch?v=UKhg68QJlo0

Victory Over Suffering: A Pursuit of Joy

This week, we are on a family vacation in Branson, MO.  I honestly cannot recall the last time I was able to fully enjoy something as big as a vacation!  Our family took a trip to Mt. Rushmore three years ago, and although I was able to go see the national monument and visit a few tourist attractions, I had to spend a considerable amount of time on the trip resting or in bed.  I have been looking forward to this vacation for almost a year and excitedly planned all the fun tourist attractions and events we would participate in.  My husband was thrilled about my enthusiasm.  He has sincerely wanted to meet my expectations and make it a memorable trip for me.  Some of the tourist attractions I wanted to see were somewhat out of the way, so we decided to leave a day early to make it work.  Monday night, we were off on our family adventure.  Unfortunately, we barely made it across the border into Minnesota when we had the first mishap with a blown tire on a very busy interstate bridge over the St. Croix River.  The tire blowout was the first of a handful of setbacks that  made for a long tense two-day drive which forced us to canceled my plans for Tuesday.

Over the past several years, I began to realize how much I took for granted prior to my battle with chronic Lyme disease.  Consequently, I also discovered the simple pleasure of letting go of expectations and enjoying life as it is.  Until recently, my expectations have been minimal.  As I began to make breakthroughs in my health, I decided to make this a "victory" summer.  I have done more activities in the past month than I probably have in 10 years.  My daughter and I have been making weekly videos to document these victories.  They may not be the best quality filming; however, our videos are candid, real, and have enriched both our relationship and our enthusiasm for our mission to inspire others.  Annika's younger brothers have relentlessly teased us about making them, but we are having so much fun! This trip was to be our greatest victory in our summer project, and I think we probably made our expectations a little too high in the process of planning it.

It is funny how we can allow our expectations lead to disappointment when things do not turn out the way we pictured them.  When I think about all the times I had to completely miss out on events, the disappointment I experienced yesterday over a delay in plans now seems silly to me.  I should just be glad that I can make the trip with a few accommodations and let it be at that.  I am certain that in looking back at our vacation; we will focus on the wonderful memories we made and probably will chuckle about some of  our setbacks.

My husband and I at Silver Dollar City

Several years ago, I made it my mission to pursue joy in all things, which has not been an easy task given my circumstances.  This pursuit was the inspiration for this blog and for my social media name, "Joyful Mama."  I can honestly say that I frequently fail at this pursuit; however, I continue to stay with it.  The truth is that I was tired of feeling sorry for myself and tired of expecting others to feel sorry for me.  When your life is suddenly put on hold by something like an illness or condition, you become easily absorbed in your own suffering.  I equate it to a similar experience as going through a pregnancy in which every waking moment can easily be consumed with thoughts about the baby you are expecting, and you find yourself talking about it with everyone.  When you are constantly in pain, sick, having vertigo, heart palpitations, tremors, etc, it is nearly impossible to ignore or not think about it all the time.  The difference between a pregnancy and a chronic illness is that thoughts revolving around pregnancy do tend to be more joyful and the people around you are more likely to want to engage in discussions about a baby coming into the world.  I had to come to terms with the fact that people may not be comfortable discussing my illness or symptoms, and I had to be OK with that.  At some point, I made a decision let go of my expectations for myself and the people in my life.  In this process, I unearthed confidence and joy in at a new level which cannot be explained in worldly terms.

How do you find joy when you are suffering and in pain?  How do you find joy when you are worrying about your health, your family, or your finances?  How do you find joy when the circumstances of your life is the opposite of joyful?  Joy is an intentional pursuit which can only be fulfilled in a daily personal relationship with God.  I make joy intentional by choosing to focus on what is good in my life and putting together multiple lists of what I am thankful for.  My methods may seem too simple; however, these simple pursuits have supernaturally enriched my life in a way I cannot begin to describe.

To those who are in the middle of a very difficult battle with illness, anxiety, or depression; I am not intending to minimize your suffering or be trite to your pain.  I have been there.  I know from personal experience that there is no fathomable way to "suck it up" or make yourself not feel the way you do.  It is more of a matter of clinging to God and holding on to those promises when nothing else makes sense.  When you feel like you are losing everything, God can seem like all that is left.   God's promises may seem so far away that you could never dream of finding the light out of the darkness of your circumstances.  It takes a tremendous amount of trust to keep going when it seems like you have lost hope.    It may not seem like there is a light, but I assure you there is and hope may come in an unexpected way.  My hope was grounded in reflecting on Christ's unimaginable suffering for my sake.  At my lowest point, I felt a kinship to the story of Jesus in the Garden of Gethsemane.  He was in  so much anguish that He literally sweat drops of blood.  This story brought more comfort to me than anything the world could offer.  If anyone understands our suffering, it is Jesus. 

Now that I am on the other side of falling into the pit of despair, I frequently feel a tremendous amount of joy knowing that I can achieve victory and take back when the enemy of illness has robbed.  In experiencing this joy, I have come to realize how deceptive our feelings are.  Just as I don't always feel in love with my spouse, children, God, etc., I don't always feel happy.  Sometimes I feel sad, anxious, or overwhelmed; however, I am committed to live my life serving my spouse, children, and God.   I am committed to make the best of what God has given me, including the hardships.

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JOYFUL TREASURES:  Count it All Joy

"Count it all joy when you face trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing."  --James 1:2

Roses are a beautiful reminder that though life gives us thorns, beauty remains in the steadfastness of our trials.  Our suffering may be for a season; however, the "Blessed Controller of All Things" will somehow meet us in our place of hardship to carry us through the valley.  Someday, we will receive our reward for these hardships.  Victory comes not in what we have done to overcome our sorrows; but what our Creator has done for us. 

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To learn more about my daily pursuit of joy in how I manage both my exercise and devotional time, you can watch my recent video about joy:

Victory Over Loss: Taking My Life Back

As a teenager, I had very fond memories of attending an amusement park in Kansas City called Worlds of Fun.  The first time I rode a roller coaster, I walked up to the huge contraption, terrified of what the outcome would be.  On a ride called the Orient Express, I discovered a new kind of freedom mingled with a combination of excitement and sheer terror.  Heading over that first bend and then eventually flipping upside down evoked an incredible adrenaline rush that my young mind savored.  In that screaming joyful moment, I was free!  I loved it!  Afterwards, I would stand up, knees knocking, feeling a little off balance and unsteady, my heart still racing with the memory of the thrill of victory.  The ground seemed to keep moving temporarily as I gained my bearings, yet I craved the freedom of the coaster.

 Lyme disease and chronic vertigo became my roller coaster 25-30 years later.  I experienced excruciating moments of terror as my life felt like it was diving over the bend and flipping upside down.  It was like an adrenaline rush without the freedom or joy--more like being locked up and trapped in a nightmare that stealthily ebbed away at my existence and left me off balance.  I attempted to gain my bearings, yet was unable to do so for years at a time.  With having a vestibular disorder that induced chronic vertigo, sea legs, and impaired balance,  my body literally felt like I had just walked off that roller coaster.  The ground would feel like it was vibrating, moving, and tilting.  That has been my life off and on for the past 10 years since my fist tick bite.

Although I have never been able to get my body back to where it was before my tick bite, I have made steady gains in the last two years since I have been in remission from the disease.  My husband, Mel, and my daughter, Annika, have both encouraged me to be courageous in getting out and taking my life back by gaining new experiences.  Things like taking a walk, going to church, shopping, and attending a concert or athletic event have been exciting victories for all of us.  Missing out on mother/daughter activities has been a source of grief for my daughter and I, as it felt like we were both robbed of her childhood and teenage years.  We decided to make up for lost time by making new memories together.  Annika and I used the idea of taking our lives back, restoring our loses, and having new adventures to create a vlog and share some of our experiences on video.

With Annika turning 20 earlier this month, we decided to celebrate her 20th birthday by going to the Mall of America and doing some fun activities together.   Last week, we packed up my wheelchair, grabbed food, supplements, and medical devices needed to make the trip a success, and we headed out to the mall to meet our cousins.  Our lives are extremely hectic right now, so I ended up staying up 48 hours to catch up on some work at home and prepare for the outing.  I was exhausted that day; however, I knew how much it meant to Annika, so I said a little prayer and we were off on our adventure.

At the mall, we decided it would be fun for Annika and her cousins to take me on an amusement park ride at Nickelodeon Universe and video the experience.  Annika made some calls the day before and it was recommended to try the Pepsi Roller Coaster ride.  Thinking it would be more of a "kiddie"  roller coaster ride, I reluctantly agreed.  I was unsure how the ride would affect my vestibular disorder but I figured it would be pretty simple.  Although it was nothing like the Orient Express, the Pepsi had many dips and dives associated with a roller coaster ride and that old exciting feeling of terror and thrill swept upon me.  Because of my dizziness, I had to keep my eyes closed most of the ride.  I did scream a couple or times and, to my daughter's amusement, I shouted a few bible verses.  I closed my eyes and momentarily found myself that teenager again, thrillingly free.  That momentary feeling evoked a turmoil of memories for me, and when I attempted to describe the feeling for the camera, a flood of emotions hit me.  I was shaken afterwards, yet I felt as though I overcame a huge hurdle in my life and was ready to conquer the world!

A while later, I took Annika and her cousins out to eat at the Rainforest Cafe.  It felt good to be able to pay for their meal.  At the cafe, Annika and I shared her birthday meal.  Because of my digestive disorder, I have only eaten out 3 times prior to that in the last 8 years, the last time was about 2 years ago.  Steak was the only thing on the menu I thought I could handle, but it was delicious.  Going to the mall, shopping, and eating out was such a blessing!  That day, I had an adrenaline rush of joy for those steps we took to take my life back!  After our trip to the mall, I attended a concert at a bandshell along the St Croix River, where my daughter performed on her tenor saxophone.  It was a full exhausting joyful day in which I spent 2 days resting in bed to recover from it but it was so worth it!

Annika and I making silly faces as we reminisced about our crazy day at the mall!

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JOYFUL TREASURES:  Redemptive Power

"I will restore to you the years the locusts have eaten..."  --Joel 2:25a

When a chronic illness robs a person of their livelihood, loss is a difficult thing to endure; however, Christ's redemptive power is greater than our loss.  One day, we will receive a crown of victory.  The future awaiting us is more incredible than we could ever imagine!  Meanwhile, we can be more than conquerors here on earth as we trust God's promises and believe He will bestow on us an abundance of blessings in our mortal lifetime.

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Here is the video Annika and I put together about our day at the Mall of America:

Victory at Home: a Message to Parents of Chronically Ill Children

This week, mom and journalist, Apoorva Mandavilli, published an article in the New York Times, titled, "My Son Got Lyme Disease. He's Totally Fine:  Horror stories about lingering Lyme disease proliferate, but the illness is easily treated."  In the article, Mandavilli described the experience of getting her son, Akash, diagnosed with Lyme disease and the successful outcome of his receiving a four-week course of doxycycline,  Mandavilli quoted Dr. Eugne Shapiro, professor of pediatrics and epidemiology at Yale, "when it turns out to be Lyme disease, we go to the parents and say, 'Great news, it's Lyme disease, that is the best thing it could be.' 'It's baloney that you can't cure Lyme disease, it's eminently curable.' "

To Mrs. Mandavilli, I would like to say thank the Lord that your son, Akash, recovered so quickly.  I am sincerely glad that he is doing fine without any ill effects.  That aside, I find this article concerning and very misleading as it perpetuates the idea that people who contract Lyme disease, especially those who have had it years without a proper diagnosis, are delusional.  I have researched chronic Lyme for 8 years and have spoken to hundreds of patients as well as parents and family members of patients who have battled Lyme at various levels using a myriad of protocols including long-term antibiotics for up to a year or more, herbal therapies, various detox protocols, energy therapies, and diet modifications.  Some have been successful though often have taken at least a year to address the disease.  Some consider themselves to be in remission yet experience lingering symptoms and conditions activated by a weakened immune system.  Others are still fighting hard in the battle of a disease that does not care what your income, social status, or walk of life is. No two people who have experienced Lyme disease are exactly the same in how the disease manifests, how the patient experiences symptoms, or how the patient responds to medications, therapies, or treatments.

 I happen to live in a region that is a hot spot for Lyme disease.  In my family alone, my mother-in-law, sister-in-law, and five nephews have all been infected at some point over the past 18 years. A couple were so severely sick, they were hospitalized.   Most of them recovered fairly quickly, though some still have joint pain and a weakened immune system many years later.  I myself had a serious battle over a 7 year period (though the first 2 years, I didn't realize what was causing my debilitating symptoms), and  I still have mobility impairments and digestive problems from damage caused by the disease.  My two oldest children are also experiencing lingering effects from Lyme disease.  I try not to overreact when people share their own concerns with tick bites and possible infections, and I certainly do not want to scare people with my own "horror stories"-- in fact, in social situations and at doctor appointments, I tend to hold back to protect myself and my children from any negative association or stigma that might incur with having chronic Lyme.  There are many factors involved with this complicated and mystifying illness including genetic factors and exposure to multiple co-infections that have different effects on the body.   I find it disheartening that people would lump everyone in a box stating that either you are "fine" because you completely recovered after a month of antibiotics or a "chronic nut case" if you are still struggling after the standard CDC treatment for Lyme.

 When you say your son is "fine" and that Lyme disease is "an easily treated infection with no long-term consequences for children, or even the vast majority of adults", tell that to my husband and children who were my caregivers for more than five years.  Tell that to my once active and cheerful 14-year-old son who was in so much pain after his 3rd baseball game in a row this week, that his dad had to carry him from our vehicle to the house because his body ached all over and it hurt to bear weight on his legs.  Tell that to my 19-year-old daughter who often wakes up in the morning with heart palpitations and gets winded after climbing a flight of stairs because her immune system is still in a weakened state.  Tell that to Misty, whose very social, talented, and popular daughter was suddenly housebound with pain and distress, and she was forced to put her music career on hold.  Tell that to teenage sisters, Paige and Samantha, who daily fight for their lives, battling seizures and severe episodes to herxing from Lyme.  Tell that to all the parents out there with limited support systems who are fighting to be a voice for their children and navigating the world of Lyme on their own to find a treatment or protocol that brings healing to their once thriving children.

My message to the parents of chronically ill children, is that it is "OK" to "not be OK."  Don't let ignorant  comments of practitioners and other people who are fortunate enough to avoid the devastating effects of chronic Lyme bring you down.  My heart aches for your burdened hearts and all the times you have had to face the inaccurate judgement of those uninformed.  Don't worry about what other people think and put your focus on your child's well-being. Continue being an advocate for your son or daughter and trust that God's plans for your child goes beyond their condition.  Remember that you are not alone. There are many of us parents out there ready to rally behind each other.  I will do whatever I can to speak up for your child and be a voice of awareness and hope on his or her behalf.  Together, we will conquer the myths and the judgmental forces.  Together, we will raise awareness and share our stories.  Together, we will not stop until we find answers and give our children the best we can.  Together, we will fight and achieve victory!

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JOYFUL TREASURES:  Prayers and Pets

"Be joyful in hope, patient in affliction, faithful in prayer."  --Romans 12:12

There is nothing more disheartening than seeing your own child suffer.  The other night, my husband was carrying our teenage son from the vehicle to bed, and he was in obvious pain and distress.  I felt very helpless in that moment, so I dropped on my knees and began to pray earnestly for wisdom and comfort for my son.  Then, after I put together his pain protocol, I quietly tiptoed downstairs to find our dog comforting him.  My heart ached yet swelled with gratefulness in seeing my son at peace with his furry companion.  When we don't know where to turn as parents, let us come to our knees and petition on behalf of our precious children and let God intervene on their behalf.  Comfort may come in unexpected places.   

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Here is my commentary on this article and more about my son's experience with chronic illness.

**This article is based solely on personal experience and discussions/interviews with other Lyme patients.  It is not intended to be professional or expert advice. 

For more information about children with Lyme disease, you can view the following links:

https://www.lymedisease.org/mandavilli-response/?fbclid=IwAR1fWkmP4DXckjSNmYgbOAwzYW5SFRMe_H2jFs1tbe9Ckl1ZiYwpz2PCNPI


https://thislymelife.blogspot.com/2019/06/my-son-got-lyme-disease-hes-absolutely.html?fbclid=IwAR2Fkq-vXEUd79SQhs0E1kJnxI76J8PdkZ8FdY1oxj2YcTo1TiP-3G1R0dM


https://dzehm.blogspot.com/2014/12/the-voices-of-lyme-voice-of-youth.html?fbclid=IwAR2py9kZQUvbh2tNhfoU2CV94BNoz4xmccggRLp_vubv2eNChFtcED4Wk6c

https://www.youtube.com/watch?v=HOttbjEylhA&feature=youtu.be&fbclid=IwAR1qP8o0ryO3r6DImecqu1xUwRPKTcZUngV6um44JL8pUbqP50YvU3hsYoo

https://www.facebook.com/donate/342485636461153/

Heart of the Dragon: A Mother and Daughter's Victory with Chronic Illness

Everyone has a story to share and a God-given purpose. We must motivate each other to take courage and speak up! I worked for approximately 17 years in the health care industry as a Nursing Assistant, Social Worker, Group Home Manager, Public Speaker for the Alzheimer's Association, and Program Coordinator/Activities Director until my health began to decline after being exposed to Lyme disease in 2009. Eight years ago, I decided to turn my pain into a purpose and started a writing ministry with my original blog, Broken Places. My mission is to educate the public about invisible illnesses, offer hope in suffering, promote a healthy lifestyle, and inspire others to find joy in all circumstances.

My daughter, Annika, was also exposed to Lyme disease several years ago and was recently diagnosed this past year during a particularly difficult flare up while attending her first year of college. Annika also has a diagnosis of Autism Spectrum Disorder (ASD), something we did not share publicly until she made the decision to share her own testimony. She is thriving with using her unique characteristics of ASD as a strength to enhance her skills as a musician, composer, and instrument collector with an aspiration to repair band instruments as a career.

My blogs have reached out to more than 70,000 people worldwide with a message of heartache and hope. My goal is to raise awareness so that people are more sensitive to chronic conditions and to offer both inspiration and hope through my testimony and the testimony of others. Annika and I decided to take my mission and purpose a step further in hopes of touching even more lives with our video ministry, which we decided to name, Heart of the Dragon.

We came up with the title from an excerpt of the novel, Voyage of the Dawn Treader, which later was made into a motion picture. In both the novel and the movie, one of the characters, Eucstice Scrubb, antagonizes his cousins with his annoying and "bratty" behavior. While on an adventure in the magical land of Narnia, Eustice makes a foolish decision that leads him into being turned into an ugly dragon. The transformation into a dragon was just what Eustice needed to wake up as he finally saw himself or who he really was. In the process of outwardly becoming an ugly dragon, he was inwardly transformed for the better.  Eustice Scrubb had a heart change.  

We all have "dragons" in our lives--those ugly and painful aspects that grieve us.  Our "dragons" can be diseases/conditions, financial hardships, relationship struggles, addictions, undesirable habits, and other unpleasant experiences.  Out of our ugliness, hardships, and individual struggles, God shows His power by using the seemingly weak, insignificant, and unattractive to do His work.  The process of going through difficult situations to build character is often referred to as sanctification.  God sanctifies us to build our character and prepare us for something greater.  This involves a transformation of the heart and what inspired the name of our new vlog, Heart of the Dragon.  Just as Eustice becomes a victorious warrior out of his "dragonish" experience, we become victorious with our "dragonish: hardships.  With God's help we can face each day as a victor!  

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JOYFUL TREASURES:  What Makes us Extraordinary!

"Hardships often prepare ordinary people for an extraordinary destiny."  --CS Lewis

The title Heart of the Dragon is based by a quote in CS Lewis's novel, Voyage of the Dawn Treader.  These are words of encouragement for a boy who was grieved over being turned into an ugly dragon:  "Extraordinary things only happen to extraordinary people.  Maybe it's a sign that you've got an extraordinary destiny--something greater than you could've imagined."  May we all face our challenges head on as victors and embrace our extraordinary destinies!

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Here is our 1st video of our new series with original music composed by Annika for the intro!  

How do I View My Disability or Illness: as a Victim or Victor?

Heroes sometimes manifest themselves in unassuming ways.  For me, my greatest hero and cheerleader has been my daughter, Annika.  Annika has had her share of battles that started at birth.  She has faced physical and developmental challenges; however, she has always been a warrior.  Being an introvert with a brilliant mind and a gift for music, she has been misunderstood by others in her school, church, and family; however, she has fought through these misconceptions and has developed a strength and attitude that demonstrates her grit and determination.  When someone tells her she can't, it makes her all the more determined to prove that she can!

Along with dealing with her own challenges, Annika has assisted her father in being a caregiver for my needs for almost 10 years.  When I started having breakthroughs in my health which made it possible for me to get out of the house more frequently, Annika encouraged me to participate in fun activities with her such as shopping and going to movies.  She often says with enthusiasm, "It's not everyday that I get to go shopping with my mother!"  

When we go to places like Walmart, Target, or Costco, she will often grab an electric wheelchair for me to use so that I can independently shop at the store.  Unfortunately, she frequently encounters judgmental glares from other shoppers who assume that she, a seemingly healthy and capable young lady, is using an electric wheelchair for her personal benefit.  About a month ago, we went to a movie and shopping at Walmart.  While grabbing an electric wheelchair for me, a young man in a black hoodie came up to her with an angry expression and called her a "mother f------."  Annika just ignored him and brought me the wheelchair.  I was ready to go find him and give him some polite education about disabilities, but Annika just laughed and said, "What a knucklehead!"  We both ended up laughing it off and didn't let it spoil our time together.

Our culture often fosters a "victim" mentality.  Whether you have an invisible disability like my daughter experiences or a more noticeable impairment such as I have, it is easy to focus on the injustice of others who do not understand your situation and feel sorry for yourself.  Although we are not perfect, both Annika and I are determined to rise above victimization and be victors instead.  A while back, Annika was at church and saw one of the ministry leaders walking out of the sanctuary.  Her first reaction was to feel nervous and insecure that this individual might be judging her for her black highlights and piercings.  She told me later that she sensed God telling her, "Annika, is that person God?"  

In order to achieve victory in our lives, we must reshape how we see our identity.  As long as we attempt to view ourselves through the lens of other flawed humans, we will  fall short and fall into the victim mentality; but, if we begin to see ourselves through the eyes of our image-bearer, we will find our security in His sacrificial love.  We are all beautiful in the eye of our Lord and that is all that matters.    I am excited to introduce a new series of articles on ways that we can achieve victory in different aspects of our lives.  It starts with our identity in Christ!

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JOYFUL TREASURES:  Beloved by God!

1 John 3:1a "See what kind of love the Father has given us, that we should be called children of God!"

No matter what our circumstances are and how we feel about ourselves, we are precious in our Lord's sight.  We may be tempted to compare ourselves to others, but if we look heavenward and remember that "those of the spirit think of the things of the spirit," we can be "more than conquerors!"

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For more information about Chronic Conditions and Invisible Disabilities, you can read some of my other blog posts:

https://puresimplewholeliving.blogspot.com/2018/10/im-not-ashamed-daughters-perspective.html

https://puresimplewholeliving.blogspot.com/2018/09/glimpse-into-chronic-illness-life-on.html

https://puresimplewholeliving.blogspot.com/2018/05/glimpses-into-chronic-illness-letter-to.html

https://puresimplewholeliving.blogspot.com/2018/05/glimpses-into-chronic-illness-my-trip.html

https://puresimplewholeliving.blogspot.com/2018/02/simply-living-when-life-is-anything-but.html

https://puresimplewholeliving.blogspot.com/2018/03/glimpses-into-chronic-illness-why-cant.html

https://puresimplewholeliving.blogspot.com/2018/04/glimpses-into-chronic-illness-but-you.html

https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-1-healing-through.html

https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-2-lessons-ive.html

https://dzehm.blogspot.com/2015/10/care-in-our-culture-part-1-invisible.html

https://dzehm.blogspot.com/2016/02/care-in-our-culture-part-two-invisible.html

http://dzehm.blogspot.com/2014/08/kellys-hope-part-three-bridging-gap.html

Surviving the Holidays

In all the years I worked with seniors both as a caregiver and a social worker, I noticed there was frequently a much higher rate of sickness and/or death in the month of November.  This was especially the case for the week of Thanksgiving.  I also found this truth startlingly real for those who struggle with chronic conditions and invisible disabilities.  A couple of years ago, I was shocked at the number of deaths in my Lyme disease support group network from both complications of the disease and suicides that took place around Thanksgiving.  I am not sure why this happens; however, I believe it has something to do with the change in weather along with the emotional struggles that are associated with the holidays.

Face it, the holidays are just plain stressful for the healthiest person.  Our culture has imposed so many expectations and demands on us, whether cleaning and decorating homes, going to endless parties, baking for cookie exchanges, or buying the perfect gift for a secret Santa.  We are all trying to pack as much "stuff" into the short 4-6 weeks to meet both cultural and family expectations.  These expectations are enough to drive anyone crazy.  Those who have lost loved ones or have estranged relationships; the holidays can be very lonely and evoke various emotions of grief, sadness, depression, and anger.  Top that off with a debilitating condition or an illness, and the holidays can become unbearable.

During the Thanksgiving and Christmas holidays, family dynamics can be very complicated and stressful.  Many chronic conditions cause various physical and emotional impairments along with multiple sensitivities to food and chemicals.  It can be challenging for other family members to understand why it is difficult for the person to travel for a holiday event or participate with a family dinner because of both physical weakness and various sensitivities.  Those who are home bound and too sick to attend the event are often plagued with feelings of guilt, isolation, and loneliness.

How do we survive the holidays when we struggle with chronic conditions and invisible disabilities?  It starts with our attitudes.  We somehow have to let go of our expectations as to what the holidays should be, and then be OK with making a simpler and less stressful version of that expectation.  While spending the holidays with extended family, we must be open and honest about what we can and cannot handle and be firm with family about certain expectations.  We must be prepared for traveling and have the courage to openly communicate what our needs are. We may need to make compromises and other accommodations when those needs cannot be reasonably met by family.  It takes a lot of patience and grace from all ends.

When I travel for the holidays, it is extremely stressful because I have to be prepared for everything including all of my meals, supplements, and my treatments.  I also have to prepare myself for the stress on both of my body/nervous system from the drive as well as any environmental triggers I may face.  I will emotionally prepare myself for any family dynamics including questions about my health, diet, etc.  Fortunately, our extended family has overall been very gracious and understanding; however, that doesn't mean that it isn't embarrassing when something in the environment triggers a reaction.  I also frequently have to work through feelings of guilt that I am being an unnecessary burden to whoever is hosting us during the holidays.

Three years ago, I had planned on spending Thanksgiving and my 40th birthday with my extended family in Kansas.  About a month before my birthday, I had a relapse in symptoms and found out from my practitioner that I had a serious case of Lyme disease.  I was devastated.   Instead of heading to Kansas, I spent my 40th birthday bedridden in a dark room because any light triggered tachycardia and seizure-like tremors.  My husband and children brought their dinner in the bedroom and shared a birthday meal around my bed with just a small night light on.  Our Thanksgiving was a quiet affair in which I was able to get out of bed just long enough to have turkey dinner with my husband and children.  I will never forget their kindness and sacrifice for my sake.

 That Christmas was very difficult for me because it had been over a year since I had seen my parents and it didn't look like I would see any family.  When I found out that my husband's siblings would be in the area but didn't plan on spending their Christmas celebration with us, I broke down and cried with grief over spending yet another Christmas season without seeing our extended family.  My mother-in-law happened to be there as I expressed my grief, and she arranged to have a family Christmas dinner at our house.  It was such a blessing to see family that day.  Each one of my in-laws and nieces/nephews came into the bedroom to spend time with me.  One of the sweetest moments was when I was in bed reading my Bible and my great niece, Alexis, came in the room to ask me what I was reading.  Her eyes lit up when I showed her the verse.  My heart was full that day.

By the grace of God, with a fresh perspective and the right attitude, we can still enjoy our Thanksgiving and Christmas holidays in its simplest and purest fashion. Thanksgiving is a holiday of gratitude for all the blessings and gifts in our lives.  Christmas is a time for celebrating the birth of Jesus, our Redeemer and Savior.  The rest can be nice in its place; however, it is what we make it, and when we over complicate things we will be let down and disappointed.   When we focus on what matters and look to our Savior, we can always find reason to be grateful no matter what our circumstances are.  To those of you who are lonely, hurting, and suffering, I pray that you feel encouraged and blessed this Thanksgiving and Christmas.  May the Lord show you His love and mercy to find peaceful moments of joy in His transforming presence as you celebrate His birth and enjoy time with the people who mean the most to you.

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JOYFUL TREASURES:  Shared Blessings

Psalm 100:4-5- "Enter his gates with thanksgiving, and his courts with praise!  Give thanks to him; bless his name!  For the Lord is good; his steadfast love endures forever, and his faithfulness to all generations."

We have started a family tradition of sharing what we are thankful for at intimate family birthday dinners and other holiday events.  When we have a private Thanksgiving dinner, we each go around the table and take a moment to thank each other.  It makes the moment all the more special.  God's gifts are precious treasures to behold.

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For more information about Chronic Conditions and Invisible Disabilities, you can read some of my other blog posts:

https://puresimplewholeliving.blogspot.com/2018/10/im-not-ashamed-daughters-perspective.html

https://puresimplewholeliving.blogspot.com/2018/09/glimpse-into-chronic-illness-life-on.html

https://puresimplewholeliving.blogspot.com/2018/05/glimpses-into-chronic-illness-letter-to.html

https://puresimplewholeliving.blogspot.com/2018/05/glimpses-into-chronic-illness-my-trip.html

https://puresimplewholeliving.blogspot.com/2018/02/simply-living-when-life-is-anything-but.html

https://puresimplewholeliving.blogspot.com/2018/03/glimpses-into-chronic-illness-why-cant.html

https://puresimplewholeliving.blogspot.com/2018/04/glimpses-into-chronic-illness-but-you.html

https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-1-healing-through.html

https://dzehm.blogspot.com/2017/01/out-of-labyrinth-part-2-lessons-ive.html

https://dzehm.blogspot.com/2015/10/care-in-our-culture-part-1-invisible.html

https://dzehm.blogspot.com/2016/02/care-in-our-culture-part-two-invisible.html

http://dzehm.blogspot.com/2014/08/kellys-hope-part-three-bridging-gap.html