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

"I'm Not Ashamed" (a daughter's perspective)

When I was a Social Work student at Kansas State University 20 years ago, my dearest friend was another student named Brenda.  I admired Brenda because she was bold, courageous, and wasn't afraid to speak her mind.  Brenda was also in a wheelchair.  In our Social Work studies, we were taught to be politically correct in how we spoke about marginalized groups and minorities.  For example, it might be perceived as discriminatory to use the term "disabled", so we should say "differently-abled" instead.  Brenda once confessed to me that she and other people she knew with physical impairments thought that "differently-abled" was the most ridiculous term they ever heard of and found it annoying that people came up with such outrageous terms.  She didn't understand why people can't just speak plainly and tell it like it is.   

One evening, I was at a college event with Brenda and her son, when she could not get in the building with her wheelchair.  She asked me to help her son find someone to let her in.  Embarrassed at how I should approach the situation with all my "politically correct knowledge", I found a staff member and said "I have a friend who is 'differently-abled' and needs a way to get in."  As soon as it came out of my mouth, I realized how ridiculous it did sound and cringed inwardly wondering what Brenda would have thought if she heard it!

I recently told this story to my teenager daughter, Annika, who has had to help her dad in being my caregiver since I was diagnosed with Chronic Lyme in 2011.  We both laughed about the story as we talked about Annika referring me as her "differently-abled" mother.  Annika was exposed to individuals with physical impairments and cognitive loss since the day she came home from the hospital as an infant and our first stop was at the nursing home to visit her Uncle Ernie who needed nursing care for his MS.  As a social worker, I was employed in group homes and facilities for memory care and physical impairments.  I frequently brought Annika to work to spend time with my clients, and she was running activities by the time she was 10 years old.  Because of this exposure, helping me with my own physical impairments came naturally for Annika.  This week, Annika encountered a man in a wheelchair at Walmart that left quite an impression on her.  She shared this story on Facebook and told me that I could post it on my blog.  I couldn't be prouder of my profoundly wise and compassionate daughter!

"Yesterday, I was shopping, and I passed a guy in a wheelchair.  I glanced at him as I passed, and he had an amputated leg.  Now, I have a disabled family member, and I spent a lot of time around elderly people when I was younger so I am not new to this stuff.  I was just kind of thinking. "Oh, his leg is amputated", and like any adult would do, I just continued on.

Then, the guy says, "Go on and ask."

I turned and glanced at him, completely surprised.  He says to me, "I saw you glance at me.  You're wondering what happened to me.  Ask."

I didn't know what to say.  I tend to be very mild mannered unless you're family or a close friend.  That's when I am blunt and bold.  The man goes on to tell me that he ruptured a blood vessel and his leg "died." He tells me about the time a six year-old girl asked him what happened, and he told her he lost it at the hospital.  Then, she asked him, "Did you go back and find it?"  We both laughed over this statement, and it was the first time I had a good laugh in a while.  It felt good.

He ended the statement with something along the lines of, "You were wondering if it is okay to ask."   I told him there was no judgement from me.  I have a disabled family member in a wheelchair, so I get it.  He answered, "See, all the kids ask, but the adults never do because they are afraid of OFFENDING SOMEONE."  He snarled the last 2 words, waiving his hand in annoyance.

That conversation got me thinking.  The man had probably received his share of judgement for being in a wheelchair, or for missing his leg for that matter.  I'm guessing I was just in the wrong place at the wrong time.  I understand how it goes because I can't even count how many times I've stared someone down with a nasty glare until they saw me and awkwardly looked away when they were judgmentally staring at my mother in a wheelchair.  I am proud to know her and be seen with her, whether or not I am pushing her in her wheelchair.  It annoys me when people judge her or stare just because she is sitting in a chair with wheels.  It's like they are staring at an object.  I'll have you know that my mother is fully human.  She works very hard to keep up with us yahoos.  She is very kind and can easily make me laugh.  The guy at the store was pretty dang human too.

We are all guilty of staring and thinking less of someone because they are disabled.  We judge them as less of a person because they are in a wheelchair, using a walker or cane, using a service dog, can't see or hear, or because they look or act strange.  That is not true at all.  They are just like you but function differently, and please don't go around saying they are "differrently-abled."  Mom and I could laugh for hours over that ridiculous statement.  I am saying they are human too.  If we learn to treat them as such, maybe our world would be a better place.

One last thing.  To the guy with the long hair and the Green Bay Packers jacket sitting in a wheelchair in the shoe isle at Walmart:  I don't know your name, and I don't think you will ever see this but I will say it anyway.  Yesterday, you stopped this random girl with red and black hair wearing a gray sweatshirt and black beanie because she glanced at your missing leg.  She was sort of just aimlessly wandering around, trying to kill time.  She just had a long, rough, and disappointing day, and she was feeling discouraged and down when she passed you.  

The reason she left Walmart with a huge smile on her face, happy though she left empty handed, and the reason why she went to bed knowing she had a good day was because she ran into this random guy sitting in a wheelchair in the shoe isle.  Believe it or not, you made my day, sir.  Thank you."

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JOYFUL TREASURES:  Taking Risks

Deuteronomy 31:6- "Be strong and courageous.  Do not fear or be in dread of them, for it is the Lord your God who goes with you.  He will not leave you or forsake you."

This is a selfie Annika and I took June of 2017 when she talked me into going shopping with her for a Father's Day gift.  I hadn't been in a store since 2011 when I was treating for Lyme and almost passed out.  I was nervous about using one of the wheel chair scooters at the Target store but Annika got the scooter for me and showed me how to use it.  We had so much fun together and have been able to go shopping together a handful of times since.  Thank you to my sweet daughter for encouraging me and helping me to take risks and go for it!

_______________________________

Watch this recent video we put together on one of our recent shopping expeditions!!

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

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

Glimpse Into Chronic Illness: Life on the Sidelines

Chronic Illness and invisible disabilities create a battleground for unseen heroes and unorthodox victors. Age, wealth, and social status mean very little when it comes to facing these conditions because disease has a way of leveling the playing field.  In my Lyme disease and CIRS (Chronic Inflammatory Response Syndrome) social network, I have encountered a variety of individuals from different walks of life. Some are young and beautiful individuals who outwardly appear to have everything going for them, yet they are inwardly hurting, grieving, and feeling they have to face these challenges alone. Individuals with chronic conditions often have emotional trauma in coping with both physical and social losses--especially when they are forced to withdrawal from society as a result of enduring intense pain, weakness, neurological symptoms, and various sensitivities to light, noise, chemicals, and food.

No matter how you try to sugarcoat it, experiencing life on the sidelines is just plain hard.   It is a daunting and grievous process for anyone who has been through it, especially young moms and dads who were forced to give up their career, a spouse, or a close family member/friend over the ordeal. As you experience social withdrawal, grief can sneak up on you in unexpected ways.  You go on Facebook and other forms of social media because that is the only way to stay connected to other people.  Some days you find yourself sad or envious when you observe pictures of your friends, family, and acquaintances living a "normal" life.  You see smiling faces of people going on vacation, enjoying family events, and celebrating holidays, while you find getting out of bed to be an ordeal.  Then, you feel guilty for your negative emotions and berate yourself for not accepting your isolation and being happy for other people who have never experienced living on the sidelines or missed out on "normal" activities.

The grief that a person experiences with social withdrawal can infiltrate every aspect of your relationships, whether it is with your own family or distant relatives, friends, and members of your church.  You see the look of disappointment on your child's face when you miss yet another concert, play, or sporting event, and you feel terrible for letting them down.  You sigh as your entire family leaves for church, a birthday party, or a wedding and you can't make it.  You plan a trip to see your extended family and have to cancel yet again because you are having another flare up.  You find out family members are in town for a reunion or party but don't think to stop by afterwards since you are too sick to leave the house.  You finally are able to get out for a family dinner or community event but have to brace yourself for what to say when you are unable to partake in the meal and have to bring foods that you know are safe to eat.  You worry about what people might say to you, that they might judge or question you.  Maybe they will perceive you are on the next "fad" diet or misunderstand your reasoning for the food choices you are forced to make because you are either allergic or unable to tolerate anything else.  You have to prepare yourself for any potential embarrassment if you might react to someone's perfume, air freshener, cigarette smoke, or cleaning chemicals they might  be using at the event.  You wonder how you should discreetly handle the situation, especially when you are in someone else's home and you don't want to upset them or feel like you are a burden.  Family, friends, and church members may become awkward and uncomfortable around you because they just don't know what to say.  If you are in a wheelchair or need devices for mobility, you may encounter stares or uncomfortable glances from people who are startled to see a young mom with physical impairments.  You may be out in public and observe someone purposely moving to the other entrance to avoid you.  You may avoid certain situations to protect yourself from rejection and then feel guilty for your feelings.

These are all very real experiences that I or someone I know who has a chronic condition/invisible disability have gone through at some point.  When we grieve these losses, we can easily be pulled into a downward spiral of bitterness and depression, and the "pull yourself up by the bootstrap" mentality becomes a false perception that will eventually let us down.  What do we do with our grief, and how do we handle our fears, worries, and disappointments?  Christ's redeeming power is the only true antidote that can lift us out of such despair.  Christ knows more than anyone else what it is like to be isolated from society when He endured the most horrific death imaginable while experiencing complete separation from His Father.  He was tortured and humiliated so that He could share in our loneliness, grief, and sadness.  Christ wants us to trust Him to carry our burdens so that we can we truly heal.  Healing begins in layers of forgiveness and letting go of our fears/worries of what others think.   Living on the sidelines is is a gut-wrenching experience that allows the Lord to change our hearts as we renew our perspective to appreciate what we have.  It forces us to take NOTHING for granted.

In 2015, I experienced unimaginable suffering and grief while going through a major relapse that forced to be bedridden for a time.  It felt like I was starting over and I completely lost any ground gained from five years of fighting chronic Lyme disease.  I wanted my life back again!  In my recovery process, I asked my friends and family to pray that I would be completely back to "normal" by May of 2018 so that I could attend my daughter's high school graduation without any problems.  In those 2 1/2 years, I prayed for God to help me as I painstakingly rehabilitated my body through series of exercises, alternative therapies, and diet modifications.  I didn't give up and eventually had real results when I started taking a few risks in getting back to "normal" activities.    For the first time in several years, I could make it through concerts and other school events without feeling like I was going to pass out the entire time.  My teenage daughter took me shopping for the first time in over six years, and we celebrated the accomplishment with a selfie!  I was able to attend church, movies, and family events.   I even took a walk around the neighborhood while pushing my wheelchair for support. I shared some of these experiences on social media and received much encouragement and positive feedback from others.  I felt like I could accomplish anything with God's help and the encouragement and support of my friends and family!

Although my prayer request wasn't answered in the way I hoped, I did make it to my daughter's graduation and was able to relax and enjoy myself.  On that momentous occasion, my heart was full of happiness and gratitude the entire time!  A couple of weeks later, we planned a graduation party which became a reunion with friends and family.  It was a very joyful event for all of us.  I made it to both the graduation and her party without a problem, and my daughter and I had an incredible summer making up for lost time together before she was ready to head off to college.  We spent as much time as possible together working on projects at the house, going on rides in our family vehicle, and taking shopping trips.  We even took a 500 mile trip together to see some of our relatives and visited places from my childhood. This summer we transformed how we viewed our situation.  Instead feeling sorry for ourselves and fretting over my continued impairments, we used that time to enjoy every moment that was redeemed for God's glory.  I felt truly blessed to be able to attend church and some family events, and I found myself experiencing confidence in ways I have never had before.

 I am a believer that the Lord doesn't waste our suffering because it has a purpose, and I try to use my own losses to empathize and encourage others who are grieving.  Despite all of the grief and trauma that sideline living has brought me, I can honestly say that I have a tremendous amount of happiness in experiencing these precious moments with my family.  I truly hope that my story will inspire others to defy the odds and take risks.  Happiness may seem impossible at the moment, and we may not see the light in our circumstances, but there is always hope around the bend.  I can testify that God can redeem our despairing experiences for a greater purpose.  We may need to modify our goals and dreams to fit God's plan for us, but He will work it out in His own way and timing.   Never give up no matter what!

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JOYFUL TREASURES:  Plan a Date Night!

1 Corinthians 13:4-8, "Love Never Fails."

As I began to come out of living in the sidelines marred by chronic illness, I gained more appreciation for activities I once took for granted.  I especially treasure taking date nights out with my husband who has  been committed to stay by my side and navigate our relationship through insurmountable challenges.  It seems like our bond of love defies the odds and grows stronger each year.  We typically dine out once a year for our anniversary, and our favorite dates are movie nights together. Our date nights are a simple reminder of our early years as a couple, and it feels so good get out and enjoy time alone together!

_______________________________

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

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